Today marks the beginning of World FTD Awareness Week in more than 12 countries. Efforts are going on around the world to bring awareness to the disease. Today, in the New York Times, was a full page informational ad. Tomorrow mornings, on the Today show, two FTD experts will be interviewed. This exposure is wonderful, but it still isn't enough.
There is a link going around on Facebook that shows one of the presidential candidates standing among an audience. A very brave woman stands up and tells the candidate about her husband who had passed away a few months ago from Frontotemporal Dementia and the toll it has taken on her family. Her story was sad, and mirrored so many of the cases we hear of every day. The candidate had a sympathetic look and gave the woman a hug, whispering words into her ear.
The candidate then stands in front of the crowd and talks about how more money needs to be put into research. Continuing, there was a story that this candidate had approached someone (I am sorry I don't remember if it was a government official or a scientific researcher, but it doesn't really matter to the story) and asked how much it would take to find the cure to diseases. Further explanation was that perhaps a cure could be found instead of "Say, a future piece of military equipment?" This statement alone made me cringe since I think the military needs more equipment, not less, but I should not wander into my political opinions here.
The main issue I have with this exchange? Once the candidate was before the audience, the subject had changed from FTD and was now Alzheimer's Disease. The candidate heard the word "dementia" and immediately went to Alzheimer's. Just like the majority of others, all dementias are immediately thrown in to the Alzheimer's box.
How can we get it across to the world that dementia is not a disease, it is a symptom caused by disease. It is a horrid symptom and because Alzheimer's Disease leads to dementia, the conclusion is made that all dementia is AD. There are causes of dementia, too many to get into, other than Alzheimer's and FTD. FTD will remain the focus of my rant though.
Almost every time we hear about FTD, it is prefaced or followed by the words "a rare form of dementia." Of course, FTD is much, much less common than AD. Yet it is estimated that around 10% of all dementia cases are caused by FTD, not by FD. That is not so rare to me. That means if you line up 100 dementia patients, at least 10 of them suffer from FTD. If you line up 100 people who are sneezing and coughing, it just might be likely that 10 of them suffer from allergies, not a cold. Does that make allergies rare? Not in my mind. Again, the symptoms are not those of just one illness, just as dementia isn't.
I won't complain about hearing about "FTD, a rare form of dementia" though. At least it is being talked about. I will be bombarding my Facebook page with info each day of this World FTD Awareness Week. Hopefully, some of my Facebook friends will take the time to read some of them and not block me to get rid of my pestering.
Oh, by the way, guess what other "world awareness week" it is? You guessed it, Alzheimer's Disease! We can't even get our own week!
Sunday, September 25, 2016
Saturday, September 17, 2016
Where Is That Empathy I Talked About?
http://scitechconnect.elsevier.com/beastie-boy-died-frontal-lobe-dementia/?utm_source=socialmedia&utm_medium=neuro&utm_campaign=Beastie+Boy+John+Berry+Died+of+Frontal+Lobe+Dementia+%E2%80%93+But+What+Is+It%3F&sf27566537=1
It is extremely sad and pathetic that the only way you hear about FTD in the mainstream media is when someone dies from it. This was the case with Beastie Boy's member, John Berry. The link above is to a story about his death and contains some good information and understanding of the disease.
You would think the mainstream media would read what they wrote or broadcast and think, "Hmmm... I wonder what this disease is and why we don't hear about it?" then do a bit of research and publicize it, even just a little. Yeah, you would think!
This week, I had a chiropractor recommend I consider what I understand is an experimental treatment, a laser treatment that has been used for multiple sclerosis. She told me that it helped a patient, who was unable to walk at all, start to walk again. She went on to explain that since it is plaque based as well, it should be worth it to me to try it and that she would be able to do it for me
Only problem is, FTD is not plaque-based. Of course, she was assuming FTD is the same as Alzheimer's Disease. She was assuming this even though I have previously given her printed information to explain FTD after she had suggested other alternative and unproven treatments. In FTD, it is thought that TAU proteins build up inside the brain cells which kills the brain cells. Inside the brain cells! I would not even consider a laser treatment in hope that it might dissolve the protein built up inside my brain cells.
I can not really fault her for not understanding what FTD is. There is no talk of it out there in the mainstream. So, when people hear that it is a type of dementia, they jump right to Alzheimer's. When I was trying to give a 20-word or less description of FTD. She listened and asked, "Well, why does that happen?" I am afraid to admit that I lost it. I, quite loudly, responded, "We don't know! That is the problem! There is very little research because all the research dollars goes into Alzheimer's research! That's why you don't know anything about it!"
She is an amazing chiropractor, probably the best I have ever been to. I am extremely grateful that she cares about me so much. I consider her my friend as much as I do my chiropractor. I hope she is still speaking to me when I go in for my next appointment.
Before I saw the article about John Berry and FTD, I had other intentions for a subject for today's blog entry. I planned on writing about the lack of empathy.
I have written before about how the lack of empathy is often one of the earliest recognizable symptoms of FTD and how it can leave me feeling totally empty. Lately, though, my lack of empathy is nothing like it was in my earlier stages. Now it kind of comes and goes. Some days I will care, other days I will not.
This week I received a phone call that yet another person in my life has been diagnosed with breast cancer and that now it has also spread into her spine. Her prognosis is not good and has been told that the treatments will not cure her, but may possibly extend her life for a while. She, as you can imagine, is feeling devastated. I am also feeling devastated that I will most likely be losing another friend to this horrid disease.
The news has taken the wind right out of my sails. I cannot shake this sense of sadness and am already anticipating the loss. It has also hit me over the head and caused me to realize just how hopeless my own situation is. Then, I feel guilty because I am turning it around to myself and think that I should be more concerned for her than for myself.
I just cannot shake this feeling. I have been crying many times during the day and other times find myself just staring off into space, trying not to think about it. I want that lack of empathy back. I want to feel numb again. I think I now understand why people say they drink to feel numb. Too bad I don't drink.
Sorry for the depressing tone of this post, but I guess it will give you an idea of the frustrations that people diagnosed with FTD fight through every day. I will try to be like Scarlet O'Hara and believe that tomorrow will be a better day!
It is extremely sad and pathetic that the only way you hear about FTD in the mainstream media is when someone dies from it. This was the case with Beastie Boy's member, John Berry. The link above is to a story about his death and contains some good information and understanding of the disease.
You would think the mainstream media would read what they wrote or broadcast and think, "Hmmm... I wonder what this disease is and why we don't hear about it?" then do a bit of research and publicize it, even just a little. Yeah, you would think!
This week, I had a chiropractor recommend I consider what I understand is an experimental treatment, a laser treatment that has been used for multiple sclerosis. She told me that it helped a patient, who was unable to walk at all, start to walk again. She went on to explain that since it is plaque based as well, it should be worth it to me to try it and that she would be able to do it for me
Only problem is, FTD is not plaque-based. Of course, she was assuming FTD is the same as Alzheimer's Disease. She was assuming this even though I have previously given her printed information to explain FTD after she had suggested other alternative and unproven treatments. In FTD, it is thought that TAU proteins build up inside the brain cells which kills the brain cells. Inside the brain cells! I would not even consider a laser treatment in hope that it might dissolve the protein built up inside my brain cells.
I can not really fault her for not understanding what FTD is. There is no talk of it out there in the mainstream. So, when people hear that it is a type of dementia, they jump right to Alzheimer's. When I was trying to give a 20-word or less description of FTD. She listened and asked, "Well, why does that happen?" I am afraid to admit that I lost it. I, quite loudly, responded, "We don't know! That is the problem! There is very little research because all the research dollars goes into Alzheimer's research! That's why you don't know anything about it!"
She is an amazing chiropractor, probably the best I have ever been to. I am extremely grateful that she cares about me so much. I consider her my friend as much as I do my chiropractor. I hope she is still speaking to me when I go in for my next appointment.
Before I saw the article about John Berry and FTD, I had other intentions for a subject for today's blog entry. I planned on writing about the lack of empathy.
I have written before about how the lack of empathy is often one of the earliest recognizable symptoms of FTD and how it can leave me feeling totally empty. Lately, though, my lack of empathy is nothing like it was in my earlier stages. Now it kind of comes and goes. Some days I will care, other days I will not.
This week I received a phone call that yet another person in my life has been diagnosed with breast cancer and that now it has also spread into her spine. Her prognosis is not good and has been told that the treatments will not cure her, but may possibly extend her life for a while. She, as you can imagine, is feeling devastated. I am also feeling devastated that I will most likely be losing another friend to this horrid disease.
The news has taken the wind right out of my sails. I cannot shake this sense of sadness and am already anticipating the loss. It has also hit me over the head and caused me to realize just how hopeless my own situation is. Then, I feel guilty because I am turning it around to myself and think that I should be more concerned for her than for myself.
I just cannot shake this feeling. I have been crying many times during the day and other times find myself just staring off into space, trying not to think about it. I want that lack of empathy back. I want to feel numb again. I think I now understand why people say they drink to feel numb. Too bad I don't drink.
Sorry for the depressing tone of this post, but I guess it will give you an idea of the frustrations that people diagnosed with FTD fight through every day. I will try to be like Scarlet O'Hara and believe that tomorrow will be a better day!
Sunday, September 11, 2016
One of Those Days
Today was just one of those days. Then again, all days with FTD are "one of those days."
It is a Sunday and I was ready to relax, read the Sunday paper, do the puzzles, have an extra cup of coffee. Later, I would probably make a nice meal. Even though I am "retired" now and could make Sunday dinner every day, it is just not the same. I would probably even watch the baseball game. Actually, it's a good thing I didn't get to watch the baseball game, it was an ugly one. Lost by eight runs and left nine runners on base. Do the math... we should have won! "We" as if I am out there playing with them. It IS we, dang it. I have been following and loving the Pittsburgh Pirates my entire life. So, that was my plan for the day.
You guessed it by now, I am sure. The day ended up not going anything like the plan. We usually do our grocery shopping on Monday, maybe Tuesday if Monday is already scheduled. This coming week, Monday's schedule is full, Tuesday's schedule is full, as well as the rest of the days. That left two choices, going to the grocery store today or not going at all this week. I would probably have picked option #2, but no way my husband was agreeing to that one. Plus, we were out of cookies and we cannot have that!
I have blogged many times about the horrors of grocery shopping. Because it is one of the most stressful things I do in a week and I have been told it is for others with FTD, I have carefully developed ways to make it less stressful. Just making the list seems to be a huge stress in our house. I have learned to prepare the list one or two days before we plan to go, sort through the coupons and have it clipped together and ready to go. That way it eliminates one of the stresses on the actual shopping day.
I had not looked at my upcoming week's schedule beyond the out of town trip we need to make tomorrow for a doctor's visit. I was ready for that one, even have the restaurant picked out for us to go to lunch! This morning, my husband tells me we need to do the grocery shopping today. I took several deep breaths before responding, then agreed to go. This meant I must do the list and shop in the same day.
I am sure you are thinking "What is the big deal?" aren't you? I won't go into the whole "one thing at a time principal" as I have written about that too much already. That principle, though, is what makes making the list stressful. I have to go through the ad for what is on sale, go through my coupons, go through the pantry and frig to check on levels on items we might need. All through this is my husband saying "You don't need cream this week." Yes, I know, I am the only one who uses it. "I do need juice." Yes, I know, we get it every week. I ask something like "Do we need provolone cheese?" I am looking for yes or no. What I get is "Yeah, we could use some, but we don't need any cheddar, we have about half a bag of mozzarella and an unopened bag of..." Arrrrggghhh!!! After all that, my brain is screaming "Too much information, what do I do with it?" That makes me feel like my brain is actually spinning and unable to find where to stop. After that, I find it extremely difficult to concentrate on anything or to remain calm.
To then have to go to the grocery store with all the customers, children screaming, background music playing and dealing with "Where did they move the rice cakes this week?" It is too much! Even paying at the end, while my husband is doing the bagging because no bagger showed up, is a serious challenge. I am sure that the cashiers look up, see me and think "Oh, no, she came to my line again!"
I managed to only begin to freak out twice in the store and was able to walk away without screaming cuss words. That is quite an accomplishment. I managed to cope well once we got home as well. There was a phone message from our daughter, so I put away the essentials and then sat down and returned the call. Those minutes (okay, the half hour) of rest and sharing love calmed me down and removed the stress. I changed a couple things about my planned Sunday dinner that will leave us with a good and healthy meal, but will be less stressful and easier to complete. I realized that with all the stress earlier in the day, if one little thing went wrong with cooking (and it would have, it always does) I would be broken.
Why have I gone into so much drivel about an unplanned trip to the grocery store? It is to tell anyone with FTD and the caregivers to learn what stresses them and try to make concessions to the stress so that you don't ruin your entire day and the entire day for anyone around you. It is important to accept your limitations and let go of the guilt you feel because you can't do the things you used to. By doing that, it makes it easier to improvise and come up with ways to cope. By realizing that I was already stressed from making the list and preparing to shop, I was able to calm myself at the store for a change. By taking a break and then reducing my plans for the rest of the day, I made myself ready to be able to finish the day as calmly as possible.
Well, at least I hope so, I do still have to go cook that dinner. Wish me luck!
It is a Sunday and I was ready to relax, read the Sunday paper, do the puzzles, have an extra cup of coffee. Later, I would probably make a nice meal. Even though I am "retired" now and could make Sunday dinner every day, it is just not the same. I would probably even watch the baseball game. Actually, it's a good thing I didn't get to watch the baseball game, it was an ugly one. Lost by eight runs and left nine runners on base. Do the math... we should have won! "We" as if I am out there playing with them. It IS we, dang it. I have been following and loving the Pittsburgh Pirates my entire life. So, that was my plan for the day.
You guessed it by now, I am sure. The day ended up not going anything like the plan. We usually do our grocery shopping on Monday, maybe Tuesday if Monday is already scheduled. This coming week, Monday's schedule is full, Tuesday's schedule is full, as well as the rest of the days. That left two choices, going to the grocery store today or not going at all this week. I would probably have picked option #2, but no way my husband was agreeing to that one. Plus, we were out of cookies and we cannot have that!
I have blogged many times about the horrors of grocery shopping. Because it is one of the most stressful things I do in a week and I have been told it is for others with FTD, I have carefully developed ways to make it less stressful. Just making the list seems to be a huge stress in our house. I have learned to prepare the list one or two days before we plan to go, sort through the coupons and have it clipped together and ready to go. That way it eliminates one of the stresses on the actual shopping day.
I had not looked at my upcoming week's schedule beyond the out of town trip we need to make tomorrow for a doctor's visit. I was ready for that one, even have the restaurant picked out for us to go to lunch! This morning, my husband tells me we need to do the grocery shopping today. I took several deep breaths before responding, then agreed to go. This meant I must do the list and shop in the same day.
I am sure you are thinking "What is the big deal?" aren't you? I won't go into the whole "one thing at a time principal" as I have written about that too much already. That principle, though, is what makes making the list stressful. I have to go through the ad for what is on sale, go through my coupons, go through the pantry and frig to check on levels on items we might need. All through this is my husband saying "You don't need cream this week." Yes, I know, I am the only one who uses it. "I do need juice." Yes, I know, we get it every week. I ask something like "Do we need provolone cheese?" I am looking for yes or no. What I get is "Yeah, we could use some, but we don't need any cheddar, we have about half a bag of mozzarella and an unopened bag of..." Arrrrggghhh!!! After all that, my brain is screaming "Too much information, what do I do with it?" That makes me feel like my brain is actually spinning and unable to find where to stop. After that, I find it extremely difficult to concentrate on anything or to remain calm.
To then have to go to the grocery store with all the customers, children screaming, background music playing and dealing with "Where did they move the rice cakes this week?" It is too much! Even paying at the end, while my husband is doing the bagging because no bagger showed up, is a serious challenge. I am sure that the cashiers look up, see me and think "Oh, no, she came to my line again!"
I managed to only begin to freak out twice in the store and was able to walk away without screaming cuss words. That is quite an accomplishment. I managed to cope well once we got home as well. There was a phone message from our daughter, so I put away the essentials and then sat down and returned the call. Those minutes (okay, the half hour) of rest and sharing love calmed me down and removed the stress. I changed a couple things about my planned Sunday dinner that will leave us with a good and healthy meal, but will be less stressful and easier to complete. I realized that with all the stress earlier in the day, if one little thing went wrong with cooking (and it would have, it always does) I would be broken.
Why have I gone into so much drivel about an unplanned trip to the grocery store? It is to tell anyone with FTD and the caregivers to learn what stresses them and try to make concessions to the stress so that you don't ruin your entire day and the entire day for anyone around you. It is important to accept your limitations and let go of the guilt you feel because you can't do the things you used to. By doing that, it makes it easier to improvise and come up with ways to cope. By realizing that I was already stressed from making the list and preparing to shop, I was able to calm myself at the store for a change. By taking a break and then reducing my plans for the rest of the day, I made myself ready to be able to finish the day as calmly as possible.
Well, at least I hope so, I do still have to go cook that dinner. Wish me luck!
Sunday, September 4, 2016
FTD Sucks (and so does my balance)
"FTD Sucks" is written on a key fob given to me by a beautiful and generous woman. She makes them in honor of her daughter whom lost to FTD. She started making them with fabric she found in her daughter's closet after she lost her battle with the disease. She also made some others that are not so in your face, but I love mine. It sums it right up.
Then yesterday a woman, a caregiver for her mother with FTD and a member of one of the online support groups I frequent, shared a great poster made by a friend of hers. It shows a raised middle finger and says "F*** This Disease!" This sign is now hanging over my computer. A much better description of FTD than the actual name of the disease!
Both of these sum up how I am feeling this week. On this past Wednesday, I was sitting on the sofa feeling useless. There are three shrubs along our deck that I have always trimmed by hand because I want them a certain way. I looked out and saw them and thought "I can do that!" because I could do three sides of them sitting on a chair at the edge of the deck. The problem came when I wanted to do the backs. I had to walk uphill just a few steps to reach them. Halfway through the first one, my balance went and I went down. I landed on one of the other bushes, then rolled the rest of the way. I realized we think a lot faster than we talk because I thought all through that short roll "Don't hit your head. Don't hit your head. For the love of God, don't hit your head." I didn't hit my head. The next day I was pretty well bruised in numerous places, so no damage done. Even the bush survived!
Fast forward to Saturday. Again, sitting on the sofa feeling useless and looking at the dirty living room picture window. To clean it, I need to climb a ladder and move it three times. At least I was smart enough to know that was out of the question. Then a remember seeing a bottle of Windex Outdoors in the garage. This would be super easy, just needed to put it on the end of the hose and drag the hose around the house. I was even smart enough to allow my husband to help with that part. So, here I am, in front of the house, standing behind a few holly bushes and spraying the window. You guessed it, somehow I lost my balance and fell backwards... right on top of one of the holly bushes. I had been upset with my husband because he had stayed out there in case I had any problem but I wanted to do it all myself. Well, so thankful he was brave enough to go against my wishes! He got me out of the holly bush and into the space between it and the next one. I was then able to crawl a few feet to the front porch and pull myself up. Then, God bless him, he stood right behind me, holding onto the belt loops of my jeans as a preventative move after I insisted I had to finish. Again, no damage to me except bruises and a very bruised ego. I wish I could say the same for the holly bush. I think that one is a goner. By the way, Windex Outdoors is wonderful. The window is just as sparkling clean as it would have been by me climbing up the ladder and doing it by hand. They will probably quit making it though. That seems to always happen when I fall in love with a product.
The answer to the question you are most likely thinking is a big "Yes, I have finally learned my lesson." Today, all bruised up, I have been put on the bench and have been forbidden to do outside work. I did not disagree with the benching at all, just sat and watched the baseball game. I may still sit and look outside and feel useless, but I won't go out and take any risks of falling. I will never leave the confines of the house without a cane. I will also think about biting the bullet and consider buying a rolling walker.
Yeah, FTD sucks and F*** This Disease! Couldn't have said it better myself.
Then yesterday a woman, a caregiver for her mother with FTD and a member of one of the online support groups I frequent, shared a great poster made by a friend of hers. It shows a raised middle finger and says "F*** This Disease!" This sign is now hanging over my computer. A much better description of FTD than the actual name of the disease!
Both of these sum up how I am feeling this week. On this past Wednesday, I was sitting on the sofa feeling useless. There are three shrubs along our deck that I have always trimmed by hand because I want them a certain way. I looked out and saw them and thought "I can do that!" because I could do three sides of them sitting on a chair at the edge of the deck. The problem came when I wanted to do the backs. I had to walk uphill just a few steps to reach them. Halfway through the first one, my balance went and I went down. I landed on one of the other bushes, then rolled the rest of the way. I realized we think a lot faster than we talk because I thought all through that short roll "Don't hit your head. Don't hit your head. For the love of God, don't hit your head." I didn't hit my head. The next day I was pretty well bruised in numerous places, so no damage done. Even the bush survived!
Fast forward to Saturday. Again, sitting on the sofa feeling useless and looking at the dirty living room picture window. To clean it, I need to climb a ladder and move it three times. At least I was smart enough to know that was out of the question. Then a remember seeing a bottle of Windex Outdoors in the garage. This would be super easy, just needed to put it on the end of the hose and drag the hose around the house. I was even smart enough to allow my husband to help with that part. So, here I am, in front of the house, standing behind a few holly bushes and spraying the window. You guessed it, somehow I lost my balance and fell backwards... right on top of one of the holly bushes. I had been upset with my husband because he had stayed out there in case I had any problem but I wanted to do it all myself. Well, so thankful he was brave enough to go against my wishes! He got me out of the holly bush and into the space between it and the next one. I was then able to crawl a few feet to the front porch and pull myself up. Then, God bless him, he stood right behind me, holding onto the belt loops of my jeans as a preventative move after I insisted I had to finish. Again, no damage to me except bruises and a very bruised ego. I wish I could say the same for the holly bush. I think that one is a goner. By the way, Windex Outdoors is wonderful. The window is just as sparkling clean as it would have been by me climbing up the ladder and doing it by hand. They will probably quit making it though. That seems to always happen when I fall in love with a product.
The answer to the question you are most likely thinking is a big "Yes, I have finally learned my lesson." Today, all bruised up, I have been put on the bench and have been forbidden to do outside work. I did not disagree with the benching at all, just sat and watched the baseball game. I may still sit and look outside and feel useless, but I won't go out and take any risks of falling. I will never leave the confines of the house without a cane. I will also think about biting the bullet and consider buying a rolling walker.
Yeah, FTD sucks and F*** This Disease! Couldn't have said it better myself.
Sunday, August 28, 2016
Conflicting Symptoms
FTD is a fickle disease. It is fickle in many ways which makes it worse. It also chooses when to make the symptoms flare up with no discretion. The symptoms often conflict which each other and I never know which one is going to win the fight to control me each day.
One of the first symptoms talked about with a diagnosis of FTD is apathy. Of course we all know that apathy is not caring, just plain not giving a damn about anything. Yep, I agree, definitely one of the first symptoms. It certainly was with me, at work, at home, everywhere and everything.
One of the other first symptoms is loss of energy. Things that I used to do in two hours now can take me two days. For someone who always took pride in how many things I was able to do, that is a cruel symptom to dump on someone. Because of the loss of energy and often feeling exhausted it is really difficult to accomplish much some days. It has been explained to me that your brain needs rest as much as your body does. That is the reason given that we seem to need a lot of sleep, much more than normally needed.
This inability to accomplish much is one of the most frustrating things I deal with each day. I have written here more times that people probably care to read, but here I go again. I have explained how I have to break up tasks into tiny tasks before I can do anything. I used to clean my house in one afternoon. I still clean something just about every afternoon, but it takes me two weeks to clean the house. I don't even touch the downstairs, which is primarily my husband's "man cave" and the laundry room. I gave up cleaning his room even before FTD because no matter how careful I was, he would always find something that I didn't return to the exact place he likes it. If he didn't keep a hundred things on his desk, it might be easier, but the easiest for me was to tell him to clean his own da**ed room.
As usual, I have digressed. It does take me two weeks to get the house cleaning and, you guessed it, it is time to start all over again. Fortunately there are no kids or pets in the house or it would be a disaster. This inability to get the housework done, not even mentioning any yard work, makes me beg for more apathy! I am always looking around the house and sometimes it seems that all I can see is dust and dirt. The windows need cleaned. I think some of them never got cleaned in the spring and here it is almost fall when I usually wash them all again. Little repairs need to be done. The carpets need to be cleaned but I don't feel up to preparing for the cleaner to come. It involves cleaning baseboards, deep vacuuming and moving furniture. I must break here and assure you that it is safe to eat in my house. The kitchen and bathrooms get cleaned more often than anything else does.
My problem is that I am apathetic about getting things done, but not enough that I don't care what it looks like! Don't get me wrong, my house is not dirty by many people's standards, but it is by my own standards. I don't think anyone comes into my house and says "Ewww, what a filthy house!" or at least I hope not! I see it though. I see the dust bunnies hiding behind the couches. I see the squirrel nose prints on the patio door. That one is okay with me though. Those little buggers entertain me all the time, as opposed to the dust bunnies who refuse to do a single trick.
The other FTD symptom that conflicts with my limited energy and ambition, along with my apathy, is the anger issue. I get so frustrated that things are not done, and that I cannot seem do them anymore, then I become very angry. People with FTD often lash out in anger and that is certainly true with me. I probably look and sound like a child throwing a temper tantrum. It is a vicious cycle. I throw the tantrum which wears me and saps my small amount of energy. I know I should feel terrible about throwing it, but then the apathy kicks in and I don't care. Of course, then I think that I should feel guilty because of the things I said or the things I threw or slammed down. I'm sure you get the picture. It is not a pretty one.
Thole tantrum issue leads me to one of my questions about FTD and the aphasia that comes with it. I often struggle to speak. I try to start speaking and either nothing comes out or I just keep repeating the first syllable over and over until I realize what I am doing. Then I stop talking for a minute or so and rephrase what I am saying. That trick has been working most of the time so far. Sometimes, though, the words just won't come out. Then I get so frustrated that I start to swear. Amazingly, the swear words come out just fine, are plenty loud and quite clear. I often wonder if the neighbors hear me and what they think. It's okay though, the apathy kicks in and I don't care anymore.
One of the first symptoms talked about with a diagnosis of FTD is apathy. Of course we all know that apathy is not caring, just plain not giving a damn about anything. Yep, I agree, definitely one of the first symptoms. It certainly was with me, at work, at home, everywhere and everything.
One of the other first symptoms is loss of energy. Things that I used to do in two hours now can take me two days. For someone who always took pride in how many things I was able to do, that is a cruel symptom to dump on someone. Because of the loss of energy and often feeling exhausted it is really difficult to accomplish much some days. It has been explained to me that your brain needs rest as much as your body does. That is the reason given that we seem to need a lot of sleep, much more than normally needed.
This inability to accomplish much is one of the most frustrating things I deal with each day. I have written here more times that people probably care to read, but here I go again. I have explained how I have to break up tasks into tiny tasks before I can do anything. I used to clean my house in one afternoon. I still clean something just about every afternoon, but it takes me two weeks to clean the house. I don't even touch the downstairs, which is primarily my husband's "man cave" and the laundry room. I gave up cleaning his room even before FTD because no matter how careful I was, he would always find something that I didn't return to the exact place he likes it. If he didn't keep a hundred things on his desk, it might be easier, but the easiest for me was to tell him to clean his own da**ed room.
As usual, I have digressed. It does take me two weeks to get the house cleaning and, you guessed it, it is time to start all over again. Fortunately there are no kids or pets in the house or it would be a disaster. This inability to get the housework done, not even mentioning any yard work, makes me beg for more apathy! I am always looking around the house and sometimes it seems that all I can see is dust and dirt. The windows need cleaned. I think some of them never got cleaned in the spring and here it is almost fall when I usually wash them all again. Little repairs need to be done. The carpets need to be cleaned but I don't feel up to preparing for the cleaner to come. It involves cleaning baseboards, deep vacuuming and moving furniture. I must break here and assure you that it is safe to eat in my house. The kitchen and bathrooms get cleaned more often than anything else does.
My problem is that I am apathetic about getting things done, but not enough that I don't care what it looks like! Don't get me wrong, my house is not dirty by many people's standards, but it is by my own standards. I don't think anyone comes into my house and says "Ewww, what a filthy house!" or at least I hope not! I see it though. I see the dust bunnies hiding behind the couches. I see the squirrel nose prints on the patio door. That one is okay with me though. Those little buggers entertain me all the time, as opposed to the dust bunnies who refuse to do a single trick.
The other FTD symptom that conflicts with my limited energy and ambition, along with my apathy, is the anger issue. I get so frustrated that things are not done, and that I cannot seem do them anymore, then I become very angry. People with FTD often lash out in anger and that is certainly true with me. I probably look and sound like a child throwing a temper tantrum. It is a vicious cycle. I throw the tantrum which wears me and saps my small amount of energy. I know I should feel terrible about throwing it, but then the apathy kicks in and I don't care. Of course, then I think that I should feel guilty because of the things I said or the things I threw or slammed down. I'm sure you get the picture. It is not a pretty one.
Thole tantrum issue leads me to one of my questions about FTD and the aphasia that comes with it. I often struggle to speak. I try to start speaking and either nothing comes out or I just keep repeating the first syllable over and over until I realize what I am doing. Then I stop talking for a minute or so and rephrase what I am saying. That trick has been working most of the time so far. Sometimes, though, the words just won't come out. Then I get so frustrated that I start to swear. Amazingly, the swear words come out just fine, are plenty loud and quite clear. I often wonder if the neighbors hear me and what they think. It's okay though, the apathy kicks in and I don't care anymore.
Sunday, August 21, 2016
The Anger Issue
Anger is one of the symptoms of bvFTD. Even it wasn't, wouldn't you get angry because you are saddled with having FTD? There are different types of anger. The basic one is when you get angry at something and but are able to keep it to yourself. Next and worse is when you get angry at something and you verbally lash out about it. The worst one of all is when you get angry and lash out physically.
Fortunately, I have not experienced the worst one. I will admit, though, that there have been a few times when I was lucky that I could rein in that reaction. I experience the other types much more often than is healthy or that I want. I know that FTD is going to cause anger. I try to not reach the second step of verbally lashing out. I wish I could say I succeed. I rarely succeed.
I used to laugh at my husband for arguing with the television. Now, I do it worse than he ever did. Some days I must simply turn off the television or change the channel. The news channels are the worst for me. Oh, I also yell at the newspaper... not sure it hears me though. Of course neither does the television. I waste way too much of my limited energy on anger some days.
Worse than sitting there yelling at inanimate objects is when I snap at people. It can be at people I don't know (especially at the grocery store where I am over-stimulated the entire time), as well as at people I love. Think about how many times a day you look at someone or listen to someone and think "what an idiot" and keep on going. It's that keep on going part that I lack. I think it, I say it. I think you have done something in an incorrect way, I say it.
There is one situation where I often act out inappropriately. If I am trying to do something such as reading, watching TV, cooking, coloring pictures or anything that requires any brain power at all, I cannot handle any other stimulation. I can have soft music in the background because I don't have to pay attention to that. What drives me over the edge is other types of noise. These can include someone eating something crunchy, clunking around in the kitchen and the list goes on and on and on.
One habit of my husband's is often unbearable to me. Since the invention of DVR's we have recorded all the TV shows and sports shows so we can watch them at our convenience and fast forward through the commercials. That works for me. What doesn't work is when he is watching a sporting event and fast forwards through until he sees something he deems worth watching. This habit causes unbearable over-stimulation and if I don't walk away and go to my room soon enough, I snap. The absolute worst is during a baseball game. I have always loved baseball and still find it relaxing to watch. I often joke that it is my favorite sport because it is slow enough I can follow along. I cannot enjoy watching it in bits and pieces.
All of this is reiterating things that I know I have written about before, but for a good reason. People try to understand what I am talking about when I first explain this FTD symptom. Sometimes I think they truly do understand and other times I can tell they are just agreeing to shut me up. The problem comes when these people may "get it" but don't seem to store it away. I find myself having to re-explain the condition quite often, at least as often as every time I lash out.
I do realize it is a difficult condition to grasp. "What do you mean you can't help it?" or "Of course you can stop yourself." How I wish that were true. After I lash out or walk away in anger, I know fairly quickly that I have acted inappropriately. I regret what I did or said, but I also know that it was the FTD that caused it. FTD can change your entire personality and it is horrible realizing that you hurt the other person or people involved.
I try to, after I settle down, go back to apologize and explain what happened and how it built up to cause my reaction. That is when I need the person to actually pause and think, to realize that I would not have done this pre-FTD and to understand. It doesn't help when they do not really listen to my explanation, just shrug it off and say it is okay. No, it is not okay. I hate it and often hate myself because of the way I react. What I need is for someone to say "I understand" and truly mean it.
What it boils down to is that while I do need what most call a caregiver, it is really a care partner that I need. I need someone who can support me, to listen to my frustrations, to forgive me when I offend and to understand when I need assistance and when I do not. A care partner reads about FTD but doesn't stop there. A care partner remembers what they have read and heard about FTD. A care partner realizes that FTD is not going to go away and that it is not something I chose to have or did anything to cause it to happen to me. A care partner learns to shrug off the bad and to seek out the good in me. There is still a lot of good in me. It is what I tell myself when I look in the mirror and cringe. I tell myself that I am still in there somewhere.
Fortunately, I have not experienced the worst one. I will admit, though, that there have been a few times when I was lucky that I could rein in that reaction. I experience the other types much more often than is healthy or that I want. I know that FTD is going to cause anger. I try to not reach the second step of verbally lashing out. I wish I could say I succeed. I rarely succeed.
I used to laugh at my husband for arguing with the television. Now, I do it worse than he ever did. Some days I must simply turn off the television or change the channel. The news channels are the worst for me. Oh, I also yell at the newspaper... not sure it hears me though. Of course neither does the television. I waste way too much of my limited energy on anger some days.
Worse than sitting there yelling at inanimate objects is when I snap at people. It can be at people I don't know (especially at the grocery store where I am over-stimulated the entire time), as well as at people I love. Think about how many times a day you look at someone or listen to someone and think "what an idiot" and keep on going. It's that keep on going part that I lack. I think it, I say it. I think you have done something in an incorrect way, I say it.
There is one situation where I often act out inappropriately. If I am trying to do something such as reading, watching TV, cooking, coloring pictures or anything that requires any brain power at all, I cannot handle any other stimulation. I can have soft music in the background because I don't have to pay attention to that. What drives me over the edge is other types of noise. These can include someone eating something crunchy, clunking around in the kitchen and the list goes on and on and on.
One habit of my husband's is often unbearable to me. Since the invention of DVR's we have recorded all the TV shows and sports shows so we can watch them at our convenience and fast forward through the commercials. That works for me. What doesn't work is when he is watching a sporting event and fast forwards through until he sees something he deems worth watching. This habit causes unbearable over-stimulation and if I don't walk away and go to my room soon enough, I snap. The absolute worst is during a baseball game. I have always loved baseball and still find it relaxing to watch. I often joke that it is my favorite sport because it is slow enough I can follow along. I cannot enjoy watching it in bits and pieces.
All of this is reiterating things that I know I have written about before, but for a good reason. People try to understand what I am talking about when I first explain this FTD symptom. Sometimes I think they truly do understand and other times I can tell they are just agreeing to shut me up. The problem comes when these people may "get it" but don't seem to store it away. I find myself having to re-explain the condition quite often, at least as often as every time I lash out.
I do realize it is a difficult condition to grasp. "What do you mean you can't help it?" or "Of course you can stop yourself." How I wish that were true. After I lash out or walk away in anger, I know fairly quickly that I have acted inappropriately. I regret what I did or said, but I also know that it was the FTD that caused it. FTD can change your entire personality and it is horrible realizing that you hurt the other person or people involved.
I try to, after I settle down, go back to apologize and explain what happened and how it built up to cause my reaction. That is when I need the person to actually pause and think, to realize that I would not have done this pre-FTD and to understand. It doesn't help when they do not really listen to my explanation, just shrug it off and say it is okay. No, it is not okay. I hate it and often hate myself because of the way I react. What I need is for someone to say "I understand" and truly mean it.
What it boils down to is that while I do need what most call a caregiver, it is really a care partner that I need. I need someone who can support me, to listen to my frustrations, to forgive me when I offend and to understand when I need assistance and when I do not. A care partner reads about FTD but doesn't stop there. A care partner remembers what they have read and heard about FTD. A care partner realizes that FTD is not going to go away and that it is not something I chose to have or did anything to cause it to happen to me. A care partner learns to shrug off the bad and to seek out the good in me. There is still a lot of good in me. It is what I tell myself when I look in the mirror and cringe. I tell myself that I am still in there somewhere.
Sunday, August 14, 2016
Can't Keep Up Anymore
I have tried many times, even in this blog, to explain to someone how a task like fixing a simple dinner is, for those of us with FTD, not one task at all. One step of that task is, in reality to us, a task unto itself. There are just so many tasks our brain can handle in one day before we crash.
I have tried several different scenarios to describe this to family and friends but it just doesn't seem to come across right with the way I explain it. It is like we have a set amount of energy in our energy bank each day. The more tasks we attempt, the quicker we run out. Tasks that require several steps, like the example I usually give of baking a cake or cooking a meal, gobble up our energy at a really fast pace. A friend from our private online support group just wrote an excellent piece explaining this. Hopefully, it will get published often enough to educate people.
I intentionally started this blog entry by repeating this frustration of trying to explain how quickly I get worn out. Unfortunately, it doesn't ever seem to get any better, it just slowly worsens.
This problem has made me realize that I just cannot take care of our home anymore. Between my limitations from FTD and my husband's limitations from his various issues, it has just become too much. He tries to keep up with the yard work but it is never ending. He is having to do the yard work that he has always done, plus having to pick up a lot that I have always done. We have a decent sized lot which demands a lot of work, plus it is hilly and uneven in many areas due to a lot of rocks in the non-grassy areas. With my tendency to fall all the time, I try to do some of the work while using my cane, but it is pretty difficult to do yard work one-handed. My husband has nerve damage in his feet and lower legs so that he has less than 10% nerve function. He cannot feel uneven surfaces which creates a hazard for him as well.
It is not just the outside work, it is the housework as well. My husband is a wonderful man. He does the laundry so I don't have to go up and down the stairs or try to figure out how to operate our new washer. It's not like it used to be where we would turn a dial and pull it out to turn it on. Plus, I am just short enough that I cannot reach all the way into the washer. I didn't do this on purpose when we bought the new washer, honest!
He also takes care of running the dishwasher and unloading it. I think he likes things being put back where they belong which is a problem for me if I empty it. I never have to worry about an empty roll of paper towels or an empty box of tissues. As soon as they are empty, they magically are replaced. He does what he feels capable of around the house.
On the other hand, I cannot keep up with the rest of the housework anymore. I have to break cleaning the house into 8 or 10 projects and can only do one a day. Cleaning bathrooms one day, kitchen another, kitchen floor a separate one, on and on. I must do house cleaning every day to try to keep up with it. Doesn't that just sound like fun? It's not, believe me. Each task is a challenge, trying to remember how I do each thing.
One day last week, I decided to vacuum. My husband usually does that for me after I beg enough times. I swear he thinks if you vacuum twice a year that is enough. I had an unbelievable amount of trouble vacuuming. It probably could have won a prize on that funny video show. I cannot tell you how many times I found myself totally tangled up with the cord. I must have bumped into every piece of furniture and doorway at least twice, judging from the number of new bruises I had the next morning. I fell twice while wrestling with the vacuum. Thankfully, both times were when I was next to a bed. I pulled a couple muscles and made my back rather sore, but no real damage. Plus I didn't break anything, so I was pretty successful!
When we moved ten years ago after my husband retired, we downsized. Our house is the smallest we have ever lived in. Just 3 bedrooms, 2 baths, living room, dining room and kitchen with a small family room at the end of the kitchen, where we spend most of our time. Then downstairs in the finished basement, my husband has his man cave and the laundry room. Rooms are not big, it is a small house. I would have given up long ago if we were still living in any of our previous houses.
I guess we can basically take care of it, but we cannot keep it up to my standards of appearance. Plus the task of doing it has become too overwhelming for me and is a 24/7 frustration. I have the solution. I want to sell and move the part of the country where our daughter lives where she would be able to help us. Plus there would never be snow to shovel!
If you have any ideas on how I can convince my husband to do this, I would surely appreciate you letting me know!
I have tried several different scenarios to describe this to family and friends but it just doesn't seem to come across right with the way I explain it. It is like we have a set amount of energy in our energy bank each day. The more tasks we attempt, the quicker we run out. Tasks that require several steps, like the example I usually give of baking a cake or cooking a meal, gobble up our energy at a really fast pace. A friend from our private online support group just wrote an excellent piece explaining this. Hopefully, it will get published often enough to educate people.
I intentionally started this blog entry by repeating this frustration of trying to explain how quickly I get worn out. Unfortunately, it doesn't ever seem to get any better, it just slowly worsens.
This problem has made me realize that I just cannot take care of our home anymore. Between my limitations from FTD and my husband's limitations from his various issues, it has just become too much. He tries to keep up with the yard work but it is never ending. He is having to do the yard work that he has always done, plus having to pick up a lot that I have always done. We have a decent sized lot which demands a lot of work, plus it is hilly and uneven in many areas due to a lot of rocks in the non-grassy areas. With my tendency to fall all the time, I try to do some of the work while using my cane, but it is pretty difficult to do yard work one-handed. My husband has nerve damage in his feet and lower legs so that he has less than 10% nerve function. He cannot feel uneven surfaces which creates a hazard for him as well.
It is not just the outside work, it is the housework as well. My husband is a wonderful man. He does the laundry so I don't have to go up and down the stairs or try to figure out how to operate our new washer. It's not like it used to be where we would turn a dial and pull it out to turn it on. Plus, I am just short enough that I cannot reach all the way into the washer. I didn't do this on purpose when we bought the new washer, honest!
He also takes care of running the dishwasher and unloading it. I think he likes things being put back where they belong which is a problem for me if I empty it. I never have to worry about an empty roll of paper towels or an empty box of tissues. As soon as they are empty, they magically are replaced. He does what he feels capable of around the house.
On the other hand, I cannot keep up with the rest of the housework anymore. I have to break cleaning the house into 8 or 10 projects and can only do one a day. Cleaning bathrooms one day, kitchen another, kitchen floor a separate one, on and on. I must do house cleaning every day to try to keep up with it. Doesn't that just sound like fun? It's not, believe me. Each task is a challenge, trying to remember how I do each thing.
One day last week, I decided to vacuum. My husband usually does that for me after I beg enough times. I swear he thinks if you vacuum twice a year that is enough. I had an unbelievable amount of trouble vacuuming. It probably could have won a prize on that funny video show. I cannot tell you how many times I found myself totally tangled up with the cord. I must have bumped into every piece of furniture and doorway at least twice, judging from the number of new bruises I had the next morning. I fell twice while wrestling with the vacuum. Thankfully, both times were when I was next to a bed. I pulled a couple muscles and made my back rather sore, but no real damage. Plus I didn't break anything, so I was pretty successful!
When we moved ten years ago after my husband retired, we downsized. Our house is the smallest we have ever lived in. Just 3 bedrooms, 2 baths, living room, dining room and kitchen with a small family room at the end of the kitchen, where we spend most of our time. Then downstairs in the finished basement, my husband has his man cave and the laundry room. Rooms are not big, it is a small house. I would have given up long ago if we were still living in any of our previous houses.
I guess we can basically take care of it, but we cannot keep it up to my standards of appearance. Plus the task of doing it has become too overwhelming for me and is a 24/7 frustration. I have the solution. I want to sell and move the part of the country where our daughter lives where she would be able to help us. Plus there would never be snow to shovel!
If you have any ideas on how I can convince my husband to do this, I would surely appreciate you letting me know!
Sunday, August 7, 2016
Cookie Monster
After two days of barely eating anything, today seems like a good time to address dietary issues and there are a lot of tjem!
First, I will address the two days of barely eating anything. This happens sometimes, don't know why, don't know when, it just does. All of a sudden, I will look at food and not only does it not appeal to me, but my stomach will actually feel queasy. It is never that I am sick or have a stomach bug, it is simply that food has lost its appeal. Actually, I wish it would happen for longer periods of time as long as I could force myself to eat just enough to be nutritionally sound. I could actually lose weight.
This total rejection of food usually only lasts two or three days. My husband will practically force-feed me. He will mention any food in the house or from a nearby restaurant. Last night, he actually got me to eat three chicken mcnuggets. This is not something I would normally eat, but I think my getting tired of him trying made me give in. Today, it was a slice of cheese.
I tend to drink more coffee during these periods and I always put half and half into my coffee, so surely I can consider that to have nutritional value. It covers dairy and fat, right? Then, you add in the major food group of caffeine, and I have it covered.
The only thing that appeals to me during these days of finding food abhorrent, is cookies. Just about any sweet thing is acceptable, but mostly cookies. It is difficult to resist eating too many, but sometimes my knowledge that if I overdose on sweets, I will feel sick for the next twelve hours or so will make me stop.
That leads me into another food issue... carbohydrates! From what I hear from others with FTD, I am not alone in the craving for them. Before FTD, I was not one to crave sweets. If anything, I craved salty snacks. Not that I didn't eat sweets, I surely did, but I didn't overdose on them. Since FTD, sweets are a major craving. Hide the cookies! The cookies are the absolute worst. I don't care if they are homemade or prepackaged. During the holiday season, I make close to a hundred dozen cookies. Most are for family and friends who have all come to expect them from me. It used to be that I would eat maybe a handful of these cookies through the entire baking process and holiday entertaining. They were delicious and fancy cookies, but I was okay with that. I think it was that after making so many, they lost their appeal. Not so anymore!
Sometimes it doesn't have to be sweets. Give me a plate with a steak and potato, I will eat the potato first. Carbohydrates, in moderation, can be a good thing. When that is all you want to eat, that is a bad thing.
In one way, the sweets do some good. One of the most horrible problems with FTD is the swallowing difficulties it causes. I will be eating, then all of a sudden my throat refuses to swallow. This leads to disgusting meal times as I cough, gag and often need to spit out the food. Swallowing difficulties lead into worse problems. It gets to the point that someone with FTD may aspirate their food, into the lungs, and cause lung infections. Often times, liquids become a problem to swallow and the liquids need to be thickened in order to be swallowed. Fortunately, that hasn't happened to me yet because that just frightens me.
The link I make between carbohydrates, sweets and swallowing is a strange one. I don't seem to have difficulty swallowing the tasty treats. I cannot recall choking on them even once. The only idea I can come up with is that possibly the sweet foods produce more saliva. I have no idea if there is any validity to this, but it is the only thing that I came up with..
The swallowing issues can be many. The aspiration of food is probably the worst, right along with not being able to get enough nutrition. Yet the indignity of it is also horrid. I am still able to go out to restaurants occasionally, but am in constant fear this will happen. When I am out, I am extremely careful and take tiny bites so that if it suddenly happens, I don't have a huge mouthful of food. I will also stop eating and wrap up the rest of my meal. It is not just in a restaurant setting, it is in any setting where others are there to witness it happening. If it is repulsive to me, I can only imagine how disgusting and frightening it is to observe.
Many doctors will refer their patients with swallowing issues to a speech therapist. From all those with FTD who experience the swallowing problems and have seen a speech therapist, it did not help. Sometimes a little improvement at first, but nothing lasting. I get so tired of seeing medical professionals, that I have resisted trying this. As long as I can continue to cope, I am satisfied.
I apologize for getting into such an unappealing subject, but sometimes we have to keep it real. In the meantime, do you have any extra cookies?
First, I will address the two days of barely eating anything. This happens sometimes, don't know why, don't know when, it just does. All of a sudden, I will look at food and not only does it not appeal to me, but my stomach will actually feel queasy. It is never that I am sick or have a stomach bug, it is simply that food has lost its appeal. Actually, I wish it would happen for longer periods of time as long as I could force myself to eat just enough to be nutritionally sound. I could actually lose weight.
This total rejection of food usually only lasts two or three days. My husband will practically force-feed me. He will mention any food in the house or from a nearby restaurant. Last night, he actually got me to eat three chicken mcnuggets. This is not something I would normally eat, but I think my getting tired of him trying made me give in. Today, it was a slice of cheese.
I tend to drink more coffee during these periods and I always put half and half into my coffee, so surely I can consider that to have nutritional value. It covers dairy and fat, right? Then, you add in the major food group of caffeine, and I have it covered.
The only thing that appeals to me during these days of finding food abhorrent, is cookies. Just about any sweet thing is acceptable, but mostly cookies. It is difficult to resist eating too many, but sometimes my knowledge that if I overdose on sweets, I will feel sick for the next twelve hours or so will make me stop.
That leads me into another food issue... carbohydrates! From what I hear from others with FTD, I am not alone in the craving for them. Before FTD, I was not one to crave sweets. If anything, I craved salty snacks. Not that I didn't eat sweets, I surely did, but I didn't overdose on them. Since FTD, sweets are a major craving. Hide the cookies! The cookies are the absolute worst. I don't care if they are homemade or prepackaged. During the holiday season, I make close to a hundred dozen cookies. Most are for family and friends who have all come to expect them from me. It used to be that I would eat maybe a handful of these cookies through the entire baking process and holiday entertaining. They were delicious and fancy cookies, but I was okay with that. I think it was that after making so many, they lost their appeal. Not so anymore!
Sometimes it doesn't have to be sweets. Give me a plate with a steak and potato, I will eat the potato first. Carbohydrates, in moderation, can be a good thing. When that is all you want to eat, that is a bad thing.
In one way, the sweets do some good. One of the most horrible problems with FTD is the swallowing difficulties it causes. I will be eating, then all of a sudden my throat refuses to swallow. This leads to disgusting meal times as I cough, gag and often need to spit out the food. Swallowing difficulties lead into worse problems. It gets to the point that someone with FTD may aspirate their food, into the lungs, and cause lung infections. Often times, liquids become a problem to swallow and the liquids need to be thickened in order to be swallowed. Fortunately, that hasn't happened to me yet because that just frightens me.
The link I make between carbohydrates, sweets and swallowing is a strange one. I don't seem to have difficulty swallowing the tasty treats. I cannot recall choking on them even once. The only idea I can come up with is that possibly the sweet foods produce more saliva. I have no idea if there is any validity to this, but it is the only thing that I came up with..
The swallowing issues can be many. The aspiration of food is probably the worst, right along with not being able to get enough nutrition. Yet the indignity of it is also horrid. I am still able to go out to restaurants occasionally, but am in constant fear this will happen. When I am out, I am extremely careful and take tiny bites so that if it suddenly happens, I don't have a huge mouthful of food. I will also stop eating and wrap up the rest of my meal. It is not just in a restaurant setting, it is in any setting where others are there to witness it happening. If it is repulsive to me, I can only imagine how disgusting and frightening it is to observe.
Many doctors will refer their patients with swallowing issues to a speech therapist. From all those with FTD who experience the swallowing problems and have seen a speech therapist, it did not help. Sometimes a little improvement at first, but nothing lasting. I get so tired of seeing medical professionals, that I have resisted trying this. As long as I can continue to cope, I am satisfied.
I apologize for getting into such an unappealing subject, but sometimes we have to keep it real. In the meantime, do you have any extra cookies?
Sunday, July 31, 2016
Ahhh... Ancient Chinese Treatment!
Some people, especially some who have FTD, do not want to use the word "dementia" in the name. I have heard several other words being used, including disease and degeneration. To an extent, they are correct, it is a disease that degenerates the brain which leads to dementia. Dementia is not really a disease, it is a symptom of other diseases.
My choice? Who the he** cares? It is what it is... it does not matter what you call it. Some people resent the word dementia because they do not want to be thought of as demented. I will agree with that, but then again, I don't want to be thought of as a degenerate or diseased either.
It is bad enough that the terminology of FTD did not exist for years. Most of those diagnosed were diagnosed with Pick's Disease. Often times, when people tell me they are not aware of FTD, I ask them if they have heard of Pick's Disease. Many times they have. Many times their reaction is "Whoa, that's a horrible disease!" Yep... that's FTD! Those diagnosed with FTD w/MND (motor neuron disease) like me are looked at skeptically. I ask if they know what ALS is. Of course they do, same reaction brought on by the mention of Pick's. Well, combine the two. If you are one of those who think that FTD does not exist because you have never heard of it, go ahead and call it Pick's Disease with ALS. Doesn't matter to me, there still is no cure and it is still a terminal disease.
Okay, that's the rant for today. Someone set me off on it yesterday but at least now he believes I have something wrong with me instead of thinking I was making it up. Enough ranting...
I am considering a "new" treatment. It is actually an ancient treatment, but it will be new to my approach to FTD. Reiki is an ancient Chinese therapy that works on the body's energy. To simplify it, the stronger your body's positive energy, the easier it is for the body to heal itself. Reiki is being accepted more and more by the mainstream medical field. I know of it being practiced in nursing homes and hospitals right in our local area and am sure it is more so across the world. I am meeting a master of Reiki this coming week who is interested in using me as a case study for an extended training program she is taking. Reiki has become more popular as of late, leading to it being bastardized away from the original Chinese methods. The training (I think it is a year long if I remember right.) she is getting is based on the original.
As part of this training program, she must do three case studies and has asked me to be one of them. She was aware of me and my struggle with FTD because she is a mentor for a close friend of mine who also practices Reiki. We had met a couple months ago when she visited my home along with my friend. She amazed me with her knowledge at that time. As far as I know, all the work she does on me will be free to me or at least affordable. I think this is a wonderful opportunity for me and hope it works out that we can do it.
No, I am not hoping this will "cure" my FTD. I am hoping it will lessen the severity of its symptoms. I have heard from one woman who reports that Reiki has improved her balance and walking, including less falls. Anything that improves the quality of life is definitely worth pursuing in my opinion and with this, mine is the only one that counts! I will definitely keep you posted as it goes along.
My choice? Who the he** cares? It is what it is... it does not matter what you call it. Some people resent the word dementia because they do not want to be thought of as demented. I will agree with that, but then again, I don't want to be thought of as a degenerate or diseased either.
It is bad enough that the terminology of FTD did not exist for years. Most of those diagnosed were diagnosed with Pick's Disease. Often times, when people tell me they are not aware of FTD, I ask them if they have heard of Pick's Disease. Many times they have. Many times their reaction is "Whoa, that's a horrible disease!" Yep... that's FTD! Those diagnosed with FTD w/MND (motor neuron disease) like me are looked at skeptically. I ask if they know what ALS is. Of course they do, same reaction brought on by the mention of Pick's. Well, combine the two. If you are one of those who think that FTD does not exist because you have never heard of it, go ahead and call it Pick's Disease with ALS. Doesn't matter to me, there still is no cure and it is still a terminal disease.
Okay, that's the rant for today. Someone set me off on it yesterday but at least now he believes I have something wrong with me instead of thinking I was making it up. Enough ranting...
I am considering a "new" treatment. It is actually an ancient treatment, but it will be new to my approach to FTD. Reiki is an ancient Chinese therapy that works on the body's energy. To simplify it, the stronger your body's positive energy, the easier it is for the body to heal itself. Reiki is being accepted more and more by the mainstream medical field. I know of it being practiced in nursing homes and hospitals right in our local area and am sure it is more so across the world. I am meeting a master of Reiki this coming week who is interested in using me as a case study for an extended training program she is taking. Reiki has become more popular as of late, leading to it being bastardized away from the original Chinese methods. The training (I think it is a year long if I remember right.) she is getting is based on the original.
As part of this training program, she must do three case studies and has asked me to be one of them. She was aware of me and my struggle with FTD because she is a mentor for a close friend of mine who also practices Reiki. We had met a couple months ago when she visited my home along with my friend. She amazed me with her knowledge at that time. As far as I know, all the work she does on me will be free to me or at least affordable. I think this is a wonderful opportunity for me and hope it works out that we can do it.
No, I am not hoping this will "cure" my FTD. I am hoping it will lessen the severity of its symptoms. I have heard from one woman who reports that Reiki has improved her balance and walking, including less falls. Anything that improves the quality of life is definitely worth pursuing in my opinion and with this, mine is the only one that counts! I will definitely keep you posted as it goes along.
Sunday, July 24, 2016
How Do We Explain?
FTD has got to be one of the most difficult diseases to explain to someone. I have written and said so many times about the comments I get, like "You look so wonderful, are you sure there is anything wrong." or "You seem fine. Can't you help me with this like you always did before."
This part of the difficulty is not just with FTD. When I was fighting cancer a few years back, I got the same thing. I tried to back away from some of the committee work at our church but met so much resistance that I gave in and kept plugging along. They promised they would give me more help to get the things done that were my responsibility. I should have known better. I actually walked away from an event one day. It was being held at a church member's farm and had turned out to be a wonderful event. My friend, who was also on the committee, had actually taken care of bringing the necessary supplies, paper products, basic foods, coffee pot, soda, etc. She did this even though she was recovering from surgery. Part way through the event, she became ill and somehow, once again, it was assumed I would take over. I was worn out just from carrying my folding chair down the hill to the barn where the picnic area was, so there was no way I could deal with everything. It seemed as if everyone was barking orders at me. For a while I was able to keep everyone satisfied. My friend had brought soda, bottled water, coffee and hot chocolate. The supplies had dwindled, but it was nearing the end of the event. There was still some water and plenty of coffee and hot chocolate. I was ordered to run to town and buy more soda. It was the final straw, I picked up my chair, hiked back up the hill and left. I never did organize another event. I wonder how long they waited that day for me to show up with a trunk full of soda?
This is the kind of thing that I still get. People assume that I can still do everything I used to do because I "look fine" and all. I do not keep my disease a secret. I talk about it every opportunity I get to try to get the word out to the public that FTD exists. Very few of the people I know have not been told about my brain disease. Yet when I cannot keep up with things, start stuttering and searching for words, or interrupt what they are saying because a thought has popped into my head, they become resentful and sometimes actually confrontational. When my legs don't get the message from the brain to move and I stagger or stumble, I get looks like "What is wrong with her now?"
I totally understand these things from strangers or people who do not know me well. I even understand that many people whom I have told about my FTD have never bothered to find out what it is by looking it up or reading literature I have given them. I feel hurt that they haven't made the effort, but I understand their ignorance of the disease.
It is the family and friends who I have attempted, many times, to explain the disease to and the limitations that come with it, that just frustrate me to no end. When listening to someone go on and on about a subject, often something related to the subject will pop into my mind. Yes, it will seem rude, but I will often just burst out with what I am thinking. It can be something to agree with what they are saying and sometimes to disagree. As many times as I have explained it to some people, they still get angry when it happens. People, it is not me interrupting you, it is the damned disease! I try and try to stifle the irritating things I do, but most of the time it does not work. What is so difficult about saying "Okay" then going back to what you were saying? I don't need you to tell me I am being rude or tell me "stop and let me finish." Well, actually, you could say that. Just don't say it in an insulting way like was done to me today by someone I thought understood my disease.
I am doing the best I can, folks! Some days are better than others. Some days I can actually go to the grocery store. Some days I can actually clean a room or two in my house. Some days I can have a "proper" conversation with you. Notice that I said "some" days. Other days, I am lucky that I get out of bed and get dressed. Yes, if you stopped by and saw me sitting on the couch, I might look "normal" to you. (Whatever normal is supposed to be..) If only it was visible how none of my muscles seems to want to work that day, how I feel totally exhausted which leads me to feel totally useless and depressed. Yes, I do stay in bed for twelve hours some days. Some days it takes my body that long to recharge. Some nights, out of the twelve hours, I will have had six hours of sleep.
How can we explain or get across to people that there are illnesses that cannot be seen, illnesses that cannot be fully understood until you have one, illnesses that slowly destroy your brain and steal away the abilities we always took for granted? How can we not feel hurt when we hear you make disparaging remarks to others as you turn away. Our brains don't work properly, but we can still hear. We can also sense things. We can tell when you are repulsed or when you are irritated. If we had a broken arm and a broken leg, you would see it and you would understand and make allowances for us, even offer assistance. Well, guess what, a broken brain is worse. It doesn't heal or get better. We are stuck in a body that doesn't work right anymore, knowing that it is going to kill us, probably within a few short years.
Some days it makes us extremely angry and today is one of those days for me. I think it is justified to feel this way some times. I don't sit around and feel sorry for myself, but I do get angry!
This part of the difficulty is not just with FTD. When I was fighting cancer a few years back, I got the same thing. I tried to back away from some of the committee work at our church but met so much resistance that I gave in and kept plugging along. They promised they would give me more help to get the things done that were my responsibility. I should have known better. I actually walked away from an event one day. It was being held at a church member's farm and had turned out to be a wonderful event. My friend, who was also on the committee, had actually taken care of bringing the necessary supplies, paper products, basic foods, coffee pot, soda, etc. She did this even though she was recovering from surgery. Part way through the event, she became ill and somehow, once again, it was assumed I would take over. I was worn out just from carrying my folding chair down the hill to the barn where the picnic area was, so there was no way I could deal with everything. It seemed as if everyone was barking orders at me. For a while I was able to keep everyone satisfied. My friend had brought soda, bottled water, coffee and hot chocolate. The supplies had dwindled, but it was nearing the end of the event. There was still some water and plenty of coffee and hot chocolate. I was ordered to run to town and buy more soda. It was the final straw, I picked up my chair, hiked back up the hill and left. I never did organize another event. I wonder how long they waited that day for me to show up with a trunk full of soda?
This is the kind of thing that I still get. People assume that I can still do everything I used to do because I "look fine" and all. I do not keep my disease a secret. I talk about it every opportunity I get to try to get the word out to the public that FTD exists. Very few of the people I know have not been told about my brain disease. Yet when I cannot keep up with things, start stuttering and searching for words, or interrupt what they are saying because a thought has popped into my head, they become resentful and sometimes actually confrontational. When my legs don't get the message from the brain to move and I stagger or stumble, I get looks like "What is wrong with her now?"
I totally understand these things from strangers or people who do not know me well. I even understand that many people whom I have told about my FTD have never bothered to find out what it is by looking it up or reading literature I have given them. I feel hurt that they haven't made the effort, but I understand their ignorance of the disease.
It is the family and friends who I have attempted, many times, to explain the disease to and the limitations that come with it, that just frustrate me to no end. When listening to someone go on and on about a subject, often something related to the subject will pop into my mind. Yes, it will seem rude, but I will often just burst out with what I am thinking. It can be something to agree with what they are saying and sometimes to disagree. As many times as I have explained it to some people, they still get angry when it happens. People, it is not me interrupting you, it is the damned disease! I try and try to stifle the irritating things I do, but most of the time it does not work. What is so difficult about saying "Okay" then going back to what you were saying? I don't need you to tell me I am being rude or tell me "stop and let me finish." Well, actually, you could say that. Just don't say it in an insulting way like was done to me today by someone I thought understood my disease.
I am doing the best I can, folks! Some days are better than others. Some days I can actually go to the grocery store. Some days I can actually clean a room or two in my house. Some days I can have a "proper" conversation with you. Notice that I said "some" days. Other days, I am lucky that I get out of bed and get dressed. Yes, if you stopped by and saw me sitting on the couch, I might look "normal" to you. (Whatever normal is supposed to be..) If only it was visible how none of my muscles seems to want to work that day, how I feel totally exhausted which leads me to feel totally useless and depressed. Yes, I do stay in bed for twelve hours some days. Some days it takes my body that long to recharge. Some nights, out of the twelve hours, I will have had six hours of sleep.
How can we explain or get across to people that there are illnesses that cannot be seen, illnesses that cannot be fully understood until you have one, illnesses that slowly destroy your brain and steal away the abilities we always took for granted? How can we not feel hurt when we hear you make disparaging remarks to others as you turn away. Our brains don't work properly, but we can still hear. We can also sense things. We can tell when you are repulsed or when you are irritated. If we had a broken arm and a broken leg, you would see it and you would understand and make allowances for us, even offer assistance. Well, guess what, a broken brain is worse. It doesn't heal or get better. We are stuck in a body that doesn't work right anymore, knowing that it is going to kill us, probably within a few short years.
Some days it makes us extremely angry and today is one of those days for me. I think it is justified to feel this way some times. I don't sit around and feel sorry for myself, but I do get angry!
Sunday, July 17, 2016
Negativity Unavoidable Lately
When I realized it was Sunday when I usually write in my blog, my first thought was "How in the world can I blog today, there is nothing good to write about." It sure seems like that this week. Sad because just last week I was blogging about keeping laughter in our lives.
Between the shooting of police officers and people shooting each other, it is almost too much to bear. How in the world can rabble rousers and protesters be encouraged by the shootings of police officers. If they are dead, they can not help any of us, no matter what color. Plus the biggie here... yes, there have been too many police errors lately that have killed men who should not have been. But, a few errors and bad judgments by a handful of policemen should not condemn all police. If some of those shooting each other happened to be nurses, should we condemn all nurses and start picking them off one by one? This is absolutely crazy thinking.
I am so frustrated by all of this I think because I lived through the Martin Luther King era. This man formed peaceful protests and marches. He got the point across that way more than any violence could have. Many people of all colors walked arm and arm and protested together. This peaceful movement brought many positive changes. If he had not been killed, or if someone had truly taken up his mantle, imagine how it could be today? Instead, we have two of his followers riling up the crowds to acts of violence. I just want to pull my hair out and yell at each and every one of them. We must come together in peace!
In all fairness, I will disclose that I know and love many police officers and worry about their safety always. I am also a firm supporter of 2nd amendment rights. Though I, unlike many others, do not feel that if we ban fully automatic weapons that it would destroy those rights. Banning them now, though, is too late. There are too many of them out there and like we accurately say "Take the people's guns and only the criminals will have guns." Okay, that rant is done.
Yes, I do realize that this is probably not the place to be ranting on this subject. I will though be tying it to FTD.
Staying calm and enjoying everything you can is one of the best things you can do for FTD. I remember when I was given my diagnosis. The doctor looked at my husband and me and said "Go, live you life and do all the things you have wished to do." Unfortunately, we have not followed that advice the way I would like. Most of the things on my things to do all involve travel and my husband is not comfortable traveling anywhere beyond our mailbox. Yes, it does frustrate me immensely. There are so many family members I would love to visit before my FTD reaches the point that I cannot. There are many places I would love to see. So many beaches where I would love to sit with a glass of wine, a good book and watch the waves roll in.
We do, though, keep as much laughter in our lives as we can. As I said last week, my husband has always been good with that. I don't want stressful television shows, with the exception of the news. I no longer read books with tense or sad story lines. I try to avoid negative people and people who want to dump their problems on me or make me responsible for those problems. Uh-uh, bye-bye! I have more than enough negativity trying to infiltrate my life as it is. Now though, it is nearly impossible to avoid the stressful situation is our country right now.
I don't remember laughing much the past couple weeks. I know and love many police officers, to them I say "Stay safe and I will be praying!" You know what, I think I would say the same thing to the protesters.
Between the shooting of police officers and people shooting each other, it is almost too much to bear. How in the world can rabble rousers and protesters be encouraged by the shootings of police officers. If they are dead, they can not help any of us, no matter what color. Plus the biggie here... yes, there have been too many police errors lately that have killed men who should not have been. But, a few errors and bad judgments by a handful of policemen should not condemn all police. If some of those shooting each other happened to be nurses, should we condemn all nurses and start picking them off one by one? This is absolutely crazy thinking.
I am so frustrated by all of this I think because I lived through the Martin Luther King era. This man formed peaceful protests and marches. He got the point across that way more than any violence could have. Many people of all colors walked arm and arm and protested together. This peaceful movement brought many positive changes. If he had not been killed, or if someone had truly taken up his mantle, imagine how it could be today? Instead, we have two of his followers riling up the crowds to acts of violence. I just want to pull my hair out and yell at each and every one of them. We must come together in peace!
In all fairness, I will disclose that I know and love many police officers and worry about their safety always. I am also a firm supporter of 2nd amendment rights. Though I, unlike many others, do not feel that if we ban fully automatic weapons that it would destroy those rights. Banning them now, though, is too late. There are too many of them out there and like we accurately say "Take the people's guns and only the criminals will have guns." Okay, that rant is done.
Yes, I do realize that this is probably not the place to be ranting on this subject. I will though be tying it to FTD.
Staying calm and enjoying everything you can is one of the best things you can do for FTD. I remember when I was given my diagnosis. The doctor looked at my husband and me and said "Go, live you life and do all the things you have wished to do." Unfortunately, we have not followed that advice the way I would like. Most of the things on my things to do all involve travel and my husband is not comfortable traveling anywhere beyond our mailbox. Yes, it does frustrate me immensely. There are so many family members I would love to visit before my FTD reaches the point that I cannot. There are many places I would love to see. So many beaches where I would love to sit with a glass of wine, a good book and watch the waves roll in.
We do, though, keep as much laughter in our lives as we can. As I said last week, my husband has always been good with that. I don't want stressful television shows, with the exception of the news. I no longer read books with tense or sad story lines. I try to avoid negative people and people who want to dump their problems on me or make me responsible for those problems. Uh-uh, bye-bye! I have more than enough negativity trying to infiltrate my life as it is. Now though, it is nearly impossible to avoid the stressful situation is our country right now.
I don't remember laughing much the past couple weeks. I know and love many police officers, to them I say "Stay safe and I will be praying!" You know what, I think I would say the same thing to the protesters.
Sunday, July 10, 2016
Laughing While I Still Can
FTD is a horrible disease. It steals so much from you and from everyone who loves you. Most of all, it sometimes steals your happiness.
I try to not let the frustrations of my FTD ruin my attitude. Fortunately, one of the things it has not stolen from me is my sense of humor. Hmmm... unless it has convinced me that I am funny and I am not or that I am laughing at inappropriate things. Oops, yes the second part of that thought is accurate some days. You know that feeling you get at inappropriate times when something bad or sad somehow strikes you as funny. Fortunately, you know it isn't appropriate to joke about it and your sense of appropriateness stops you from saying what you are thinking or laughing. With FTD stealing that filter from me, I go ahead and say it or laugh. But, as usual, I digress.
I do still have a decent sense of humor and so does my husband. This leads to a lot of laughter around our house. The laughter lightens the load of all the crap FTD brings upon us. We even try to laugh at FTD. Of course, with my poor husband, he never knows when I will indeed think it i funny or if I will take offense and stomp out of the room. He doesn't give up though. His sense of humor has gotten us through a lot of rough times in our life.
A good example happened about 20 years ago. My father took his own life, shot himself. It was a really tough time for all of us. His neighbor whom I had called to go check on my dad, suggested that I contact the NRA. His thought was that since Dad was a life member, there may be a small insurance policy. Turns out there is, but only if the accident is hunting related. My husband quipped, "Do you think you could convince them he thought he saw a deer run through his bedroom?" Oh, totally inappropriate. Many of my family would have been appalled. Truthfully, now it doesn't sound all that humorous. Fortunately though, all who were there immediately started laughing and we continued for quite a while. It was just what we needed... comic relief! It was the first time we had laughed since it had happened and lightened our load so that we could get through the next week or so.
I tell this story, not to talk about this private issue, but to point out just how much we depend on humor in our lives.
The humor has been difficult to find lately. Between all the fighting between the politicians about the upcoming elections, the shooting of police officers and the bad economy that seems to keep hitting many of those we love, it is tough to find much amusement. I have really had to fight off the bad moods to keep myself from sinking into depression that seems to run rampant among those of us with FTD. Again this time, I am finding humor in a strange way.
The most recent new symptom I have developed thanks to FTD, is my left leg not seeming to get messages from my brain. My balance issues previously have been pretty much limited to my right leg, up until now. With the right one, the leg pretty much just doesn't move and stays in place on the floor. This throws my balance off and it causes me to fall. As long as I have my cane to lean on so that I can try to catch my balance, or nearby furniture to grab onto or those wonderful walkers they have in the front of a lot of stores. What? You haven't seen those? Oh, maybe you still call them shopping carts. To me, it's a great walker.
With my left leg, the leg gets the message from my brain to raise up so that I can move ahead but it stops right there. All of a sudden, I will come to a screeching halt with my leg up in the air. I have to consciously think "Hey, why is my leg up like that?" Once I do that, usually I can then get the signal from the brain to the foot to go down to the floor.
Since I have already taken so many precautions because of the right leg not cooperating, I have not yet fallen because of the left one. Because I just stand there with my leg up in the air for ten or fifteen seconds or more, it causes me to laugh. So far, it has always been with my cane in my hand, near something or someone to grab onto and it keeps making me laugh. I keep thinking of the Karate Kid's position in the movie where his one leg is up.
This symptom is probably thanks to the MND part of my diagnosis (bvFTD w/MND) or muscular neuron disease. It is, in effect, ALS, but I don't care to think of it that way because if I think about it that way, it is way too depressing. We have lost several friends to ALS and one of my high school friends, with whom I have recently reconnected, is now suffering from it. It is a truly frightening disease, even more so than FTD by itself. I admit to taking an ostrich view of it. If I don't think about it, it isn't there. Since there is no treatment or cure, in my mind it is a healthy way to look at it. I will worry about that tomorrow.
So I will continue to think of myself as the Karate Kid. I will continue to find humor and laughter in everything that I can. If I offend anyone by joking or laughing at the wrong time, if I pick up on it, I will apologize, explain the disease and keep on laughing.
I try to not let the frustrations of my FTD ruin my attitude. Fortunately, one of the things it has not stolen from me is my sense of humor. Hmmm... unless it has convinced me that I am funny and I am not or that I am laughing at inappropriate things. Oops, yes the second part of that thought is accurate some days. You know that feeling you get at inappropriate times when something bad or sad somehow strikes you as funny. Fortunately, you know it isn't appropriate to joke about it and your sense of appropriateness stops you from saying what you are thinking or laughing. With FTD stealing that filter from me, I go ahead and say it or laugh. But, as usual, I digress.
I do still have a decent sense of humor and so does my husband. This leads to a lot of laughter around our house. The laughter lightens the load of all the crap FTD brings upon us. We even try to laugh at FTD. Of course, with my poor husband, he never knows when I will indeed think it i funny or if I will take offense and stomp out of the room. He doesn't give up though. His sense of humor has gotten us through a lot of rough times in our life.
A good example happened about 20 years ago. My father took his own life, shot himself. It was a really tough time for all of us. His neighbor whom I had called to go check on my dad, suggested that I contact the NRA. His thought was that since Dad was a life member, there may be a small insurance policy. Turns out there is, but only if the accident is hunting related. My husband quipped, "Do you think you could convince them he thought he saw a deer run through his bedroom?" Oh, totally inappropriate. Many of my family would have been appalled. Truthfully, now it doesn't sound all that humorous. Fortunately though, all who were there immediately started laughing and we continued for quite a while. It was just what we needed... comic relief! It was the first time we had laughed since it had happened and lightened our load so that we could get through the next week or so.
I tell this story, not to talk about this private issue, but to point out just how much we depend on humor in our lives.
The humor has been difficult to find lately. Between all the fighting between the politicians about the upcoming elections, the shooting of police officers and the bad economy that seems to keep hitting many of those we love, it is tough to find much amusement. I have really had to fight off the bad moods to keep myself from sinking into depression that seems to run rampant among those of us with FTD. Again this time, I am finding humor in a strange way.
The most recent new symptom I have developed thanks to FTD, is my left leg not seeming to get messages from my brain. My balance issues previously have been pretty much limited to my right leg, up until now. With the right one, the leg pretty much just doesn't move and stays in place on the floor. This throws my balance off and it causes me to fall. As long as I have my cane to lean on so that I can try to catch my balance, or nearby furniture to grab onto or those wonderful walkers they have in the front of a lot of stores. What? You haven't seen those? Oh, maybe you still call them shopping carts. To me, it's a great walker.
With my left leg, the leg gets the message from my brain to raise up so that I can move ahead but it stops right there. All of a sudden, I will come to a screeching halt with my leg up in the air. I have to consciously think "Hey, why is my leg up like that?" Once I do that, usually I can then get the signal from the brain to the foot to go down to the floor.
Since I have already taken so many precautions because of the right leg not cooperating, I have not yet fallen because of the left one. Because I just stand there with my leg up in the air for ten or fifteen seconds or more, it causes me to laugh. So far, it has always been with my cane in my hand, near something or someone to grab onto and it keeps making me laugh. I keep thinking of the Karate Kid's position in the movie where his one leg is up.
This symptom is probably thanks to the MND part of my diagnosis (bvFTD w/MND) or muscular neuron disease. It is, in effect, ALS, but I don't care to think of it that way because if I think about it that way, it is way too depressing. We have lost several friends to ALS and one of my high school friends, with whom I have recently reconnected, is now suffering from it. It is a truly frightening disease, even more so than FTD by itself. I admit to taking an ostrich view of it. If I don't think about it, it isn't there. Since there is no treatment or cure, in my mind it is a healthy way to look at it. I will worry about that tomorrow.
So I will continue to think of myself as the Karate Kid. I will continue to find humor and laughter in everything that I can. If I offend anyone by joking or laughing at the wrong time, if I pick up on it, I will apologize, explain the disease and keep on laughing.
Saturday, July 2, 2016
"Anticipatory Grief"
Reading the newspaper the other day, I stumbled across a notice for a seminar being held called "Anticipatory Grief." While I was familiar with the concept, I had never seen this name for the situation. It really jumped out at me because it truly sums it up in two words.
Anticipatory Grief is just what it sounds like. Often, when caring for someone with a lengthy terminal illness such as dementia, you end up going through the grieving process while they are still alive. Some, so much so, that when their loved one finally dies, that they feel only relief.
Dementia of all types is a disease that can bring on this early grieving process. We already know how much of a toll caring for a loved one with dementia takes on the caregiver. Add in the fact that they are also grieving for the loss of who that person used to be and you have a tough and sad situation. It is so much that you are grieving that they have dementia or that they are slowly dying. A lot of it is grieving for what the loved one was and what you believe they could have been.
I have experienced this more than once. The first was when my grandmother was slowing dying due to dementia. I was very close to Grandma and my Grandpap. During my junior and senior high school years, I would spend the bulk of the summer at their home in rural northeastern Pennsylvania. I loved the calmness of the environment and the love that surrounded me. At home, my parents were working their way to a divorce and it was always a stressful place to be. Grandma's was only a 3-hour drive away, but it seemed like an entirely different world. She could be a blast! She had a lot of joint pain, but would break out and dance the Charleston for me. She got me hooked on baseball while we sat out on the sunporch and listened to the Pirate games. I learned to drive their little tractor early on, then later Grandpap let me practice driving his car. Grandma never did drive.
Watching this woman's joy of living and her love for me and the rest of the family was a horrid experience. I spent a lot of the time in denial. I was not her primary caregiver, my mom was, but I visited often enough to watch her deteriorate in front of my eyes. Yes, there were fun moments, like the time my aunt had sent her chocolates and she hid them in her bra to prevent anyone getting to them before she could eat them all. Poor mom was cleaning her chest for a week. It was those chocolates covered with tiny candy balls on them and those balls hid in every wrinkle and fold for days! By the time Grandma actually died, I had already grieved enough that I did indeed only feel relief that she was no longer trapped in that body whose brain no longer functioned.
It was the same with my mother while she was slowly dying from dementia. One of the saddest days of my life was the day she finally forgot how to walk. I grieved for who she was and I was relieved when her body finally gave out. In between the deaths of Grandma and Mom, I dealt with my other grandmother dying, not of dementia, but with a variety of illnesses and multi-organ failure. Many extended family members thought there was something wrong with me, because at her funeral, I was not crying and looking sad. In fact, I was almost happy. They did not understand that I had already grieved for her and was happy that she was in a place with no suffering.
The only exception was when my favorite aunt, my mom's sister, also was suffering from dementia. This woman was my savior. She got me through a lot of my life issues, especially during my teenage years. At her house, I always knew I was loved. Yes, I was one of her caregivers through her dementia and watched her slip away from me and did go through the grieving process during that time. I sat for hours upon hours at her bedside after she was in the nursing home and hospital, but with her, after she died, I grieved all over again.
The seminar was being conducted at our local hospital by the hospital's chaplains. I would hope that it was going to address the guilt that many have after their loved one with finally dies, guilt that they are not grieving again. In many cases, the grieving does come back as you start remembering more and more about who they were and who they could have been. At least that was the way it happened for me.
I had no interest in attending their seminar. I already understood how it works and have done a lot of reading about the subject through the years. I have already discussed it with a couple different therapists. Now, with the loss of brain to mouth filters from FTD, when the pastors started offering their two cents worth, it is hard to tell what I might have told them!
Anticipatory Grief is just what it sounds like. Often, when caring for someone with a lengthy terminal illness such as dementia, you end up going through the grieving process while they are still alive. Some, so much so, that when their loved one finally dies, that they feel only relief.
Dementia of all types is a disease that can bring on this early grieving process. We already know how much of a toll caring for a loved one with dementia takes on the caregiver. Add in the fact that they are also grieving for the loss of who that person used to be and you have a tough and sad situation. It is so much that you are grieving that they have dementia or that they are slowly dying. A lot of it is grieving for what the loved one was and what you believe they could have been.
I have experienced this more than once. The first was when my grandmother was slowing dying due to dementia. I was very close to Grandma and my Grandpap. During my junior and senior high school years, I would spend the bulk of the summer at their home in rural northeastern Pennsylvania. I loved the calmness of the environment and the love that surrounded me. At home, my parents were working their way to a divorce and it was always a stressful place to be. Grandma's was only a 3-hour drive away, but it seemed like an entirely different world. She could be a blast! She had a lot of joint pain, but would break out and dance the Charleston for me. She got me hooked on baseball while we sat out on the sunporch and listened to the Pirate games. I learned to drive their little tractor early on, then later Grandpap let me practice driving his car. Grandma never did drive.
Watching this woman's joy of living and her love for me and the rest of the family was a horrid experience. I spent a lot of the time in denial. I was not her primary caregiver, my mom was, but I visited often enough to watch her deteriorate in front of my eyes. Yes, there were fun moments, like the time my aunt had sent her chocolates and she hid them in her bra to prevent anyone getting to them before she could eat them all. Poor mom was cleaning her chest for a week. It was those chocolates covered with tiny candy balls on them and those balls hid in every wrinkle and fold for days! By the time Grandma actually died, I had already grieved enough that I did indeed only feel relief that she was no longer trapped in that body whose brain no longer functioned.
It was the same with my mother while she was slowly dying from dementia. One of the saddest days of my life was the day she finally forgot how to walk. I grieved for who she was and I was relieved when her body finally gave out. In between the deaths of Grandma and Mom, I dealt with my other grandmother dying, not of dementia, but with a variety of illnesses and multi-organ failure. Many extended family members thought there was something wrong with me, because at her funeral, I was not crying and looking sad. In fact, I was almost happy. They did not understand that I had already grieved for her and was happy that she was in a place with no suffering.
The only exception was when my favorite aunt, my mom's sister, also was suffering from dementia. This woman was my savior. She got me through a lot of my life issues, especially during my teenage years. At her house, I always knew I was loved. Yes, I was one of her caregivers through her dementia and watched her slip away from me and did go through the grieving process during that time. I sat for hours upon hours at her bedside after she was in the nursing home and hospital, but with her, after she died, I grieved all over again.
The seminar was being conducted at our local hospital by the hospital's chaplains. I would hope that it was going to address the guilt that many have after their loved one with finally dies, guilt that they are not grieving again. In many cases, the grieving does come back as you start remembering more and more about who they were and who they could have been. At least that was the way it happened for me.
I had no interest in attending their seminar. I already understood how it works and have done a lot of reading about the subject through the years. I have already discussed it with a couple different therapists. Now, with the loss of brain to mouth filters from FTD, when the pastors started offering their two cents worth, it is hard to tell what I might have told them!
Sunday, June 26, 2016
Grrrrrrrr...
Nothing frustrates me more than to hear those who are caregivers for someone with FTD start to complain about the one they are caring for. This is especially true when I realize that the caregiver has no clue what to expect from someone with FTD. While no two cases of FTD seems to be the same, there are some basics that would be easy to learn about by doing just a tiny bit of research. I cannot imagine being responsible to care for someone with a disease and not reading up on it so I would know what to expect.
Today, I read something where a caregiver was complaining because the person they were caring for didn't do anything, spends too much time in bed and on the couch, won't run errands or make household repairs. People who have FTD tend to sleep and/or rest a lot. It takes an extraordinary amount of energy to exist with this disease. You know that exhausted feeling you get when you had a bad day at work trying to figure out the solution to problems that kept arising? You get home from work feeling like you had just done ten hours of hard physical labor. With FTD, you have this constantly. Remember me talking so often about the loss of executive functioning? That loss comes into play here. Every little task becomes like those problems you needed to resolve at work. A simple task. that we used to do by rote but now must be broken into itty-bitty pieces in order to accomplish anything, exhausts the functioning parts of the brain and easily results in overload. That quick fifteen minute trip to a store is long enough to cause sensory overload that wears out the brain and the body.
I can no longer clean my house in one day. I am lucky if I can clean an entire room in one day. I have to remember where the cleaning supplies are. Now, if they were all in one place, that might help, but that is a story for another day. They I have to try to remember which products to use where. I have to remember not to use window cleaner on the wood furniture or the furniture polish on the window. Yes, I have done both. Remembering how the vacuum cleaner gets turned on and how to vacuum the room while getting around the furniture can be a puzzle. Uh-oh, someone just asked me a question that I must strain my mind to answer, now I have to start figuring out the cleaning puzzle all over again. When I have finished, if I can finish, that one room, I am exhausted... mentally and physically. Hopefully you can grasp how this works. Apparently a lot of caregivers cannot. "Simple" household repairs don't exist anymore. They are now a major task.
I am in bed at night for nearly 12 hours each nigh. I don't sleep all 12 because my brain doesn't turn off very quickly. Hopefully, out of those 12 hours, I can get seven or eight hours of real sleep. I often wake up in the morning feeling more tired than I did when I went to bed. I cannot say for sure, but I suspect some of that may be due to the bizarre dreams I experience since the onset of FTD. I don't often tell people how long I stay in bed at night or I will get very judgmental reactions.
In addition, on a day that I do, or attempt to do, a physical task or something that causes sensory overload, I will need to either take a nap or retreat to my quiet place for a couple hours to recharge.
It can be very "simple" things that trigger my sensory overload or mental exhaustion. It can be walking outside to do something, especially in the yard, because I have to focus on my balance and trying not to fall in addition to the task I went out to do. Even using my cane does not help much on uneven ground. It can be someone stopping by the house or even a phone call. Those things usually involve me trying to fit together the puzzle pieces of what they are talking about and coming up with answers. This is especially true if it involves a stressful or upsetting subject. I could go on and on with examples.
The bottom line here is that if you look up FTD on the internet, you are going to quickly learn about the loss of executive functioning, the struggle to do simple tasks, the difficulty making decisions, making poor decisions, loss of balance and many, many more. I wonder if someone suddenly became the caretaker of someone with diabetes or cancer, would they not try to read up on how to best care for that person? So why would someone not do that when they are caring for someone with a brain disease.
Perhaps it is just as simple as the people who don't believe we don't have a disease because "You look wonderful." or "You don't look sick at all." Others don't believe there is anything wrong with your brain until you lose your memory. I get very frustrated, and sometimes angry, when friends, family and acquaintances say things like this because I feel they are thinking I have a mental illness or am a hypochondriac. I don't expect these people to research FTD (though I wish everyone would learn about it) so I can understand how they are reluctant to accept my diagnosis. But for a caregiver? To me this is unforgivable.
Every time I hear or read about a caretaker who has obviously not learned about FTD, I am thankful that I don't have to deal with that ignorance. I am fortunate that my family, and a small handful of friends, care enough that they have learned about the disease. I cannot imagine having to live with someone who has not.
Today, I read something where a caregiver was complaining because the person they were caring for didn't do anything, spends too much time in bed and on the couch, won't run errands or make household repairs. People who have FTD tend to sleep and/or rest a lot. It takes an extraordinary amount of energy to exist with this disease. You know that exhausted feeling you get when you had a bad day at work trying to figure out the solution to problems that kept arising? You get home from work feeling like you had just done ten hours of hard physical labor. With FTD, you have this constantly. Remember me talking so often about the loss of executive functioning? That loss comes into play here. Every little task becomes like those problems you needed to resolve at work. A simple task. that we used to do by rote but now must be broken into itty-bitty pieces in order to accomplish anything, exhausts the functioning parts of the brain and easily results in overload. That quick fifteen minute trip to a store is long enough to cause sensory overload that wears out the brain and the body.
I can no longer clean my house in one day. I am lucky if I can clean an entire room in one day. I have to remember where the cleaning supplies are. Now, if they were all in one place, that might help, but that is a story for another day. They I have to try to remember which products to use where. I have to remember not to use window cleaner on the wood furniture or the furniture polish on the window. Yes, I have done both. Remembering how the vacuum cleaner gets turned on and how to vacuum the room while getting around the furniture can be a puzzle. Uh-oh, someone just asked me a question that I must strain my mind to answer, now I have to start figuring out the cleaning puzzle all over again. When I have finished, if I can finish, that one room, I am exhausted... mentally and physically. Hopefully you can grasp how this works. Apparently a lot of caregivers cannot. "Simple" household repairs don't exist anymore. They are now a major task.
I am in bed at night for nearly 12 hours each nigh. I don't sleep all 12 because my brain doesn't turn off very quickly. Hopefully, out of those 12 hours, I can get seven or eight hours of real sleep. I often wake up in the morning feeling more tired than I did when I went to bed. I cannot say for sure, but I suspect some of that may be due to the bizarre dreams I experience since the onset of FTD. I don't often tell people how long I stay in bed at night or I will get very judgmental reactions.
In addition, on a day that I do, or attempt to do, a physical task or something that causes sensory overload, I will need to either take a nap or retreat to my quiet place for a couple hours to recharge.
It can be very "simple" things that trigger my sensory overload or mental exhaustion. It can be walking outside to do something, especially in the yard, because I have to focus on my balance and trying not to fall in addition to the task I went out to do. Even using my cane does not help much on uneven ground. It can be someone stopping by the house or even a phone call. Those things usually involve me trying to fit together the puzzle pieces of what they are talking about and coming up with answers. This is especially true if it involves a stressful or upsetting subject. I could go on and on with examples.
The bottom line here is that if you look up FTD on the internet, you are going to quickly learn about the loss of executive functioning, the struggle to do simple tasks, the difficulty making decisions, making poor decisions, loss of balance and many, many more. I wonder if someone suddenly became the caretaker of someone with diabetes or cancer, would they not try to read up on how to best care for that person? So why would someone not do that when they are caring for someone with a brain disease.
Perhaps it is just as simple as the people who don't believe we don't have a disease because "You look wonderful." or "You don't look sick at all." Others don't believe there is anything wrong with your brain until you lose your memory. I get very frustrated, and sometimes angry, when friends, family and acquaintances say things like this because I feel they are thinking I have a mental illness or am a hypochondriac. I don't expect these people to research FTD (though I wish everyone would learn about it) so I can understand how they are reluctant to accept my diagnosis. But for a caregiver? To me this is unforgivable.
Every time I hear or read about a caretaker who has obviously not learned about FTD, I am thankful that I don't have to deal with that ignorance. I am fortunate that my family, and a small handful of friends, care enough that they have learned about the disease. I cannot imagine having to live with someone who has not.
Sunday, June 19, 2016
Father's Day
This blog is not really about FTD, but since it is weighing on my mind today and I have FTD, I am going to write about it anyway. Some of us with FTD can appear selfish anyway, so today I will be. Before I am finished, I will get to a connection with FTD.
Today is Father's Day. I could not figure out why this year, more than 20 years after his death, why it was hitting me so hard. That was when I remembered it was also his birthday. It would have been 83.
My dad did not have FTD nor dementia of any type. He did however have a brain tumor. Despite what some members of my family insist, it was a benign tumor, but it kept growing. Years before his death, he received radiation treatments that shrunk the tumor enough that it relieved the pressure and the symptoms. He refused surgery, even though the tumor was operable, because he could not be given a 100% guarantee that it would be successful and he could not accept any of the possible outcomes should it be less than a complete success. Are you getting the idea that he was just a tad stubborn? You would be right, but it was a whole lot more than a tad!
Ten years or so after the radiation treatments, the tumor regrew enough that the symptoms returned. He became clumsy, needing to walk with a walking stick, had great difficulty making decisions and constantly worried about things. Hmmm... does sound a lot like FTD, doesn't it? Amazing how so many brain diseases can mimic each other.
He would not discuss nor consider receiving treatment again. He decided to sell the old family home and move into a townhouse. I spent a week at his place, helping to organize and pack. He was relying on me for a lot of things by then even though I was living four hours away. He would call and talk just about everything over with me before making a decision. He began calling me "crutch" because he couldn't seem to do anything without my help or support.
It worked both ways though. I would do the same. I would call and talk things over with him all the time. He was the only one who would tell me like it was, no coddling, yet still gentle, wise and helpful. He would also drop everything and come for a visit when I needed some things done around the house.
On my birthday, 22 years ago, my father took his own life. He could no longer accept living with the effects of the brain tumor. I was angry for a long time because I knew he could have received treatments or surgery, angry that, now that we had such a close and wonderful relationship, he left me.
My dad was not always this considerate, affectionate and supportive man. I lived a life with two fathers. The first one was extremely controlling, critical, unyielding and demanding. He was verbally abusive to my mother and verbally and physically abusive to my sister and me. He made our lives miserable. My mother left us the summer before my senior year of high school, not offering to take my sister or me with her. That made things every worse. My sister was off to nursing school, so I was the only one for him to take everything out on. I moved out of his house the day before high school graduation and didn't look back.
Even though no longer living with him, he still managed to be judgmental and critical of me and my life. A year or so after moving out, I was hospitalized and was facing major surgery at the age of 18. He came to visit me the evening before the surgery. I worked at the same hospital and, of course had many friends there. One stopped by while he was there. My friend was ten years older than me and, yes, we had gone out on a few dates but we were more friends than anything else. My dad was very cold to him and lectured me for 15 minutes after he had left. Criticizing me for having someone that much older than me in my life and how he obviously only wanted me for sex. Uh, no... we hadn't gone there. Not a good thing, to upset your daughter so much the evening before major surgery.
A couple days after my surgery, I learned that his girlfriend had waited in the car while he had visited with and lectured me about having a friend so much older. Turned out that his girlfriend was one of my classmates. I guess he was transferring his feeling for her over to my relationship with my friend. It was after that when I closed my dad out of my life as much as possible for eight years.
When our daughter was born, I decided they deserved to know each other and that I would give him a chance. Turned out that I now had a totally different father. He adored my daughter and she adored him. He was now the supportive and loving man that I wished I had had all along. It was at this time that our wonderful relationship became to flourish. He and I talked all night one night while he was visiting and he apologized for the way he had been. He said to me "Why, when I had you out shooting, did you not just aim at me before pulling the trigger?" He had watched a made-for-tv movie about the Melendez brothers who killed their parents who were not nearly as bad as he was and it hit home. I explained that I was so desperate for his approval that I could not have done that.
My second dad was an amazing man and I am so thankful that I had those later years with him. He and my sister never connected on the level that he and I had in these later years, so she only ever had the first dad. I wish they could have known each other.
Now, I will relate this lengthy story back to FTD. Now, after dealing with FTD for several years, I understand his decision to take his own life. He was a proud man who was a true jack-of-all-trades and lived an active, mostly outdoors, lifestyle. To become the man that the tumor was reducing him to was not something he could live with. He knew I would continue being his crutch and would take care of him no matter how bad his health, but he could not live with that either. I forgave him for being the first dad and I eventually forgave him for leaving me.
Happy Father's Day and Happy Birthday, Dad... I miss you and I love you... always and forever.
Today is Father's Day. I could not figure out why this year, more than 20 years after his death, why it was hitting me so hard. That was when I remembered it was also his birthday. It would have been 83.
My dad did not have FTD nor dementia of any type. He did however have a brain tumor. Despite what some members of my family insist, it was a benign tumor, but it kept growing. Years before his death, he received radiation treatments that shrunk the tumor enough that it relieved the pressure and the symptoms. He refused surgery, even though the tumor was operable, because he could not be given a 100% guarantee that it would be successful and he could not accept any of the possible outcomes should it be less than a complete success. Are you getting the idea that he was just a tad stubborn? You would be right, but it was a whole lot more than a tad!
Ten years or so after the radiation treatments, the tumor regrew enough that the symptoms returned. He became clumsy, needing to walk with a walking stick, had great difficulty making decisions and constantly worried about things. Hmmm... does sound a lot like FTD, doesn't it? Amazing how so many brain diseases can mimic each other.
He would not discuss nor consider receiving treatment again. He decided to sell the old family home and move into a townhouse. I spent a week at his place, helping to organize and pack. He was relying on me for a lot of things by then even though I was living four hours away. He would call and talk just about everything over with me before making a decision. He began calling me "crutch" because he couldn't seem to do anything without my help or support.
It worked both ways though. I would do the same. I would call and talk things over with him all the time. He was the only one who would tell me like it was, no coddling, yet still gentle, wise and helpful. He would also drop everything and come for a visit when I needed some things done around the house.
On my birthday, 22 years ago, my father took his own life. He could no longer accept living with the effects of the brain tumor. I was angry for a long time because I knew he could have received treatments or surgery, angry that, now that we had such a close and wonderful relationship, he left me.
My dad was not always this considerate, affectionate and supportive man. I lived a life with two fathers. The first one was extremely controlling, critical, unyielding and demanding. He was verbally abusive to my mother and verbally and physically abusive to my sister and me. He made our lives miserable. My mother left us the summer before my senior year of high school, not offering to take my sister or me with her. That made things every worse. My sister was off to nursing school, so I was the only one for him to take everything out on. I moved out of his house the day before high school graduation and didn't look back.
Even though no longer living with him, he still managed to be judgmental and critical of me and my life. A year or so after moving out, I was hospitalized and was facing major surgery at the age of 18. He came to visit me the evening before the surgery. I worked at the same hospital and, of course had many friends there. One stopped by while he was there. My friend was ten years older than me and, yes, we had gone out on a few dates but we were more friends than anything else. My dad was very cold to him and lectured me for 15 minutes after he had left. Criticizing me for having someone that much older than me in my life and how he obviously only wanted me for sex. Uh, no... we hadn't gone there. Not a good thing, to upset your daughter so much the evening before major surgery.
A couple days after my surgery, I learned that his girlfriend had waited in the car while he had visited with and lectured me about having a friend so much older. Turned out that his girlfriend was one of my classmates. I guess he was transferring his feeling for her over to my relationship with my friend. It was after that when I closed my dad out of my life as much as possible for eight years.
When our daughter was born, I decided they deserved to know each other and that I would give him a chance. Turned out that I now had a totally different father. He adored my daughter and she adored him. He was now the supportive and loving man that I wished I had had all along. It was at this time that our wonderful relationship became to flourish. He and I talked all night one night while he was visiting and he apologized for the way he had been. He said to me "Why, when I had you out shooting, did you not just aim at me before pulling the trigger?" He had watched a made-for-tv movie about the Melendez brothers who killed their parents who were not nearly as bad as he was and it hit home. I explained that I was so desperate for his approval that I could not have done that.
My second dad was an amazing man and I am so thankful that I had those later years with him. He and my sister never connected on the level that he and I had in these later years, so she only ever had the first dad. I wish they could have known each other.
Now, I will relate this lengthy story back to FTD. Now, after dealing with FTD for several years, I understand his decision to take his own life. He was a proud man who was a true jack-of-all-trades and lived an active, mostly outdoors, lifestyle. To become the man that the tumor was reducing him to was not something he could live with. He knew I would continue being his crutch and would take care of him no matter how bad his health, but he could not live with that either. I forgave him for being the first dad and I eventually forgave him for leaving me.
Happy Father's Day and Happy Birthday, Dad... I miss you and I love you... always and forever.
Sunday, June 12, 2016
Subgroups of FTD - bvFTD
I haven't written, for quite a while, on just what FTD is and the symptoms and different types.
There are many subgroups of FTD. All are related to the frontal and temporal lobes of the brain. Not only are there a variety of subgroups but many, if not most, of those diagnosed with FTD have a combination of more than one. I call it alphabet soup. I know I have written previously that my diagnosis is officialy bvFTD with MND.
bvFTD seems to be one of the most common. Don't ask me to back that up with scientific proof. It is just that it comes up a lot. In many cases that I know of, the diagnosis of bvFTD is the first diagnosis and as other symptoms appear, more subgroups are added on. That is true in my case.
bvFTD used to be called Pick's Disease. More people seem to be aware of that name rather than the terminology of FTD. Whatever you call it doesn't matter. It is still devastating.
bvFTD causes changes in behavior and personality. Many who are affected show signs of losing their inhibitions, acting more impulsively, making inappropriate comments and many more. Losing inhibitions could include dressing inappropriately, making inappropriate comments and forgetting all manners that used to come naturally. Examples of the loss of impulse control can include making sudden purchases without thinking it through, such as "Can I afford this?" of "What will I do with this?" Making inappropriate comments is self explanatory. It ruins relationships, both family and friends, as it offends them or makes them uncomfortable to be around the person with FTD.
I skipped right over the loss of impulse control intentionally. To me, it is the most dangerous. It amazes me how often I, and many whom I talk with, grab hot pans out of the oven without remembering potholders, or trying to turnover sizzling bacon with the fingers. It can lead to walking out in front of cars or, if still driving, turning in front of another car because you know you want to be in the store across the street. This is what finally led to me turning in my keys. I was driving by myself, saw a local eatery and decided to pick up some dinner. I saw it, so I swung left into the parking lot. I forgot about checking to see if there were cars coming at me. There were, and many choice words were thrown at me. It truly could have caused a horrible accident.
It also often causes apathy. It takes away your motivation to do things, even every day activities. Some need to be reminded to attend to their hygiene or something as simple as not wearing the same clothes every day.
Tied in the the apathy is the loss of empathy. Someone who was always concerned about everyone else can become the total opposite. They can hear about bad things happening to people and react with a 'so what' attitude. It can also lead to avoiding interaction with people... family, friends, acquaintances and even strangers. It is often this loss of empathy to lead to withdrawing from previously enjoyed activities and being around other people.
One of the biggest changes is dietary. bvFTD can trigger a greatly increased craving for sweets and carbohydrates, binge eating and/or eating a meal very quickly. Obviously, this can lead to weight gain, but also to malnutrition.
One of the main symptoms discussed between doctors and patients is the loss of 'executive functioning' which is often the first visible sign that something is wrong. I explain executive functioning as trying to get your brain to think of more than one thing. Examples can include planning ahead, making decisions, learning new skills or being easily distracted. One of the examples I use is losing the inability to follow a recipe. Following the recipe includes organizing, planning ahead and focusing on more than one thing.
Another visible sign is the speech. You might detect changes in speech patterns, struggling to find correct words and/or struggling to get the words out. Your brain knows what it wants to say, but your mouth just won't cooperate. bvFTD can also cause someone to struggle understanding what other people are saying. It can also lead to forgetfulness. I will often be talking, and half way through the sentence come to an abrupt stop because I cannot remember what I was saying. I won't go into a list of other things that can be forgotten, such as names of people and things, what you normally do and on and on.
I will try to write about more of the subgroups in the next few weeks. Of course, I may not remember.
There are many subgroups of FTD. All are related to the frontal and temporal lobes of the brain. Not only are there a variety of subgroups but many, if not most, of those diagnosed with FTD have a combination of more than one. I call it alphabet soup. I know I have written previously that my diagnosis is officialy bvFTD with MND.
bvFTD seems to be one of the most common. Don't ask me to back that up with scientific proof. It is just that it comes up a lot. In many cases that I know of, the diagnosis of bvFTD is the first diagnosis and as other symptoms appear, more subgroups are added on. That is true in my case.
bvFTD used to be called Pick's Disease. More people seem to be aware of that name rather than the terminology of FTD. Whatever you call it doesn't matter. It is still devastating.
bvFTD causes changes in behavior and personality. Many who are affected show signs of losing their inhibitions, acting more impulsively, making inappropriate comments and many more. Losing inhibitions could include dressing inappropriately, making inappropriate comments and forgetting all manners that used to come naturally. Examples of the loss of impulse control can include making sudden purchases without thinking it through, such as "Can I afford this?" of "What will I do with this?" Making inappropriate comments is self explanatory. It ruins relationships, both family and friends, as it offends them or makes them uncomfortable to be around the person with FTD.
I skipped right over the loss of impulse control intentionally. To me, it is the most dangerous. It amazes me how often I, and many whom I talk with, grab hot pans out of the oven without remembering potholders, or trying to turnover sizzling bacon with the fingers. It can lead to walking out in front of cars or, if still driving, turning in front of another car because you know you want to be in the store across the street. This is what finally led to me turning in my keys. I was driving by myself, saw a local eatery and decided to pick up some dinner. I saw it, so I swung left into the parking lot. I forgot about checking to see if there were cars coming at me. There were, and many choice words were thrown at me. It truly could have caused a horrible accident.
It also often causes apathy. It takes away your motivation to do things, even every day activities. Some need to be reminded to attend to their hygiene or something as simple as not wearing the same clothes every day.
Tied in the the apathy is the loss of empathy. Someone who was always concerned about everyone else can become the total opposite. They can hear about bad things happening to people and react with a 'so what' attitude. It can also lead to avoiding interaction with people... family, friends, acquaintances and even strangers. It is often this loss of empathy to lead to withdrawing from previously enjoyed activities and being around other people.
One of the biggest changes is dietary. bvFTD can trigger a greatly increased craving for sweets and carbohydrates, binge eating and/or eating a meal very quickly. Obviously, this can lead to weight gain, but also to malnutrition.
One of the main symptoms discussed between doctors and patients is the loss of 'executive functioning' which is often the first visible sign that something is wrong. I explain executive functioning as trying to get your brain to think of more than one thing. Examples can include planning ahead, making decisions, learning new skills or being easily distracted. One of the examples I use is losing the inability to follow a recipe. Following the recipe includes organizing, planning ahead and focusing on more than one thing.
Another visible sign is the speech. You might detect changes in speech patterns, struggling to find correct words and/or struggling to get the words out. Your brain knows what it wants to say, but your mouth just won't cooperate. bvFTD can also cause someone to struggle understanding what other people are saying. It can also lead to forgetfulness. I will often be talking, and half way through the sentence come to an abrupt stop because I cannot remember what I was saying. I won't go into a list of other things that can be forgotten, such as names of people and things, what you normally do and on and on.
I will try to write about more of the subgroups in the next few weeks. Of course, I may not remember.
Friday, June 3, 2016
Pets
Just the word "pet" conjures up soothing and calming thoughts, at least to me. Other things I think of are fun, playful and great company. The downside is I also think of walking, cleaning up poop and cleaning a litter box.
I am thinking of this today because a three friends lost their beloved pets this week. What can you say to them except that you understand, that you love them and, if you believe, will pray for them. Losing a pet leaves a huge void in a person's life. Anyone who is lucky enough to have a loving pet will understand my friends' grief. I still miss my loving cat, Schnookers even though it has been almost five years since we lost him. I still see him sometimes out of the corner of my eye. I still feel him jump up on my bed to snuggle.
I have had quite a few pets in my life, especially when my daughter was growing up. She brought home everything from a sugar glider to a corn snake. She had no fear of any creature. The only time I rejected one of her pets, it was a ferret. We discovered, very quickly, that I am highly allergic to ferrets.
Not counting her pets, I grew up with a dog and a couple cats. After leaving home, we almost always had a cat in our life. Schnookers, though, was special to me. I went through a fight with cancer, Hodgkin's Lymphoma about eight years ago. The battle lasted about six months and I won. During the treatments, I was sick a lot. My body did everything it could to get rid of the chemo and radiation. That cat was beside me the entire way. If I was lying in bed, he was lying there with me, with his head on the pillow next to mine. If I was kneeling over the toilet, he was sitting there with me. Even though, at that time, I was not the one caring for him, he chose to stay with me and offer comfort.
That's what our pets do for us. I always say that our pets are truly the ones who offer us unconditional love. When I was still working, when I came home after a particularly tough day, sitting down, reading the paper or having a cup of tea and he would settle on my lap, demanding nothing in return.
I even know of some people with FTD who have service dogs. They do anything from comforting, to helping with balance issues and, in one case, pulling a wheelchair. These animals go a step beyond... being a pet and a working dog. I can only imagine how close the two become.
As much as I crave the companionship, I will never have another pet. My beloved Schnookers was showing signs of being ill. After he died, a few people reminded me that the had mentioned that they had told me this. Thanks to FTD, it didn't truly register what they were saying. One said, "He is so thin." His breed of cat tends to be long and lean, so I thought it was a complement. I don't know what I thought the other times, but no one said that he looked sick and I should take him to the veterinarian. Not much room for subtlety for me.
I believe I let him down. If it had registered in my brain what the others were saying, if I had noticed myself how thin he was getting and taken him to the vet when it first started, maybe he could have been cured. I will never, ever, take on that responsibility on myself again.
I know how much comfort they can be and I have often mentioned to others that they consider a pet, but only if they are capable of providing the care the pet needs. I know that if he were still here with me, Schnookers would be an excellent caregiver for me. Wishful thinking, but I know he is happy that this week he gained a few friends in heaven.
I am thinking of this today because a three friends lost their beloved pets this week. What can you say to them except that you understand, that you love them and, if you believe, will pray for them. Losing a pet leaves a huge void in a person's life. Anyone who is lucky enough to have a loving pet will understand my friends' grief. I still miss my loving cat, Schnookers even though it has been almost five years since we lost him. I still see him sometimes out of the corner of my eye. I still feel him jump up on my bed to snuggle.
I have had quite a few pets in my life, especially when my daughter was growing up. She brought home everything from a sugar glider to a corn snake. She had no fear of any creature. The only time I rejected one of her pets, it was a ferret. We discovered, very quickly, that I am highly allergic to ferrets.
Not counting her pets, I grew up with a dog and a couple cats. After leaving home, we almost always had a cat in our life. Schnookers, though, was special to me. I went through a fight with cancer, Hodgkin's Lymphoma about eight years ago. The battle lasted about six months and I won. During the treatments, I was sick a lot. My body did everything it could to get rid of the chemo and radiation. That cat was beside me the entire way. If I was lying in bed, he was lying there with me, with his head on the pillow next to mine. If I was kneeling over the toilet, he was sitting there with me. Even though, at that time, I was not the one caring for him, he chose to stay with me and offer comfort.
That's what our pets do for us. I always say that our pets are truly the ones who offer us unconditional love. When I was still working, when I came home after a particularly tough day, sitting down, reading the paper or having a cup of tea and he would settle on my lap, demanding nothing in return.
I even know of some people with FTD who have service dogs. They do anything from comforting, to helping with balance issues and, in one case, pulling a wheelchair. These animals go a step beyond... being a pet and a working dog. I can only imagine how close the two become.
As much as I crave the companionship, I will never have another pet. My beloved Schnookers was showing signs of being ill. After he died, a few people reminded me that the had mentioned that they had told me this. Thanks to FTD, it didn't truly register what they were saying. One said, "He is so thin." His breed of cat tends to be long and lean, so I thought it was a complement. I don't know what I thought the other times, but no one said that he looked sick and I should take him to the veterinarian. Not much room for subtlety for me.
I believe I let him down. If it had registered in my brain what the others were saying, if I had noticed myself how thin he was getting and taken him to the vet when it first started, maybe he could have been cured. I will never, ever, take on that responsibility on myself again.
I know how much comfort they can be and I have often mentioned to others that they consider a pet, but only if they are capable of providing the care the pet needs. I know that if he were still here with me, Schnookers would be an excellent caregiver for me. Wishful thinking, but I know he is happy that this week he gained a few friends in heaven.
Sunday, May 29, 2016
Sticks and Stones...
Every little kid hears that age old expression of "Sticks and stones may break my bones, but words will never hurt me."
I hate to tell you, but who ever came up with this expressions was lying to a kid. These days, the other kid who is hurling the bad names or nasty words would most likely be accused of bullying. Within the two extremes, hopefully a happy medium exists there somewhere.
Words do hurt. Often, the words can hurt just as much as physical wounds. Add in skeptical looks and your day can be ruined. I have written about this issue several times, so I am aware of the issue and perhaps should be able to shrug it off by now, but I cannot.
What worsens those words and looks is the already instilled frustration of being limited in the things I can do, things that I used to be able to do, almost without consciously thinking about what I was doing.
Yesterday morning, I dragged myself out of bed by 7 a.m. (way before my brain kicks into gear) to head to our church parking lot for its spring festival. I had suggested to a friend that she rent a table space and attempt to sell her beautiful handmade jewelry. I offered to help her in this endeavor, figuring I could provide moral support plus visit with some of my church friends. My contribution was an extra hand in setting up the table, then sitting in the sun and holding down a chair for the five hours of the festival. I think I did a good job holding down that chair, it didn't get up once to run away.
I had also made my usual contributions to the bake sale table. I had not volunteered to work any of the church's tables because I can no longer handle money transactions. I would either cause irate customers who were short-changed or very happy customers who got back more in change than they had initially handed to me. Many people love my baked goods and my chocolate layer cake with peanut butter frosting is usually the first thing off the table. That part of the day made me feel good, that I could still make it!
Back to those hurtful words. One of the first hurtful things was when I overheard someone say was "Look now she is using her cane. She wasn't using it before." Technically, she was correct. When my hands were full of the baked goods when unloading them from the car, walking three feet and handing them to the women, I was not able to use my cane and took the risk falling. I didn't think it was my responsibility to explain that the cane is for when my sense of balance disappears or one of my legs doesn't get the signal from my brain to move. This does not occur constantly and sometimes I take the risk. I could have turned around and explained this, but figured anyone thoughtless enough to comment on it wouldn't believe me anyway, nor try to understand.
Of course there was the old reliable "You look wonderful!" Heard this one a couple times. While veiled as a complement, when coupled with the skeptical look that adds "Are you sure you are sick?" it truly hurts. What am I to do? Should I stop dressing nicely, fixing my hair and applying a little makeup to try to look a little better so that they can believe there is something wrong with me?
Throughout the entire event, there was also something going on that made me quite uncomfortable. I will not go in to the details because if anyone from the church reads this, it will be obvious whom I speaking about. Unlike others, who don't think before they speak, I, the one with no impulse control or filter between mouth and brain, will restrain my fingers from typing the hurtful thing that continued through the entire five hours. I will just hint that it involved feeling like this person's constant stare was boring a hole straight through my heart and sole. This was from a distance, so I could not hear any words being said, but knowing that this person talks even more than I do, I am confident that they were being said.
What it boils down to is that in some cases, you don't have to actually hear the hurtful words when you can read them in the other person's eyes and the look on their face. I had intended to visit the table where this person was working, but opted to stay away, because without a filter between mouth and brain, I know I would have said some hurtful words and I would not want to do that to anyone if I was able to help it.
I hate to tell you, but who ever came up with this expressions was lying to a kid. These days, the other kid who is hurling the bad names or nasty words would most likely be accused of bullying. Within the two extremes, hopefully a happy medium exists there somewhere.
Words do hurt. Often, the words can hurt just as much as physical wounds. Add in skeptical looks and your day can be ruined. I have written about this issue several times, so I am aware of the issue and perhaps should be able to shrug it off by now, but I cannot.
What worsens those words and looks is the already instilled frustration of being limited in the things I can do, things that I used to be able to do, almost without consciously thinking about what I was doing.
Yesterday morning, I dragged myself out of bed by 7 a.m. (way before my brain kicks into gear) to head to our church parking lot for its spring festival. I had suggested to a friend that she rent a table space and attempt to sell her beautiful handmade jewelry. I offered to help her in this endeavor, figuring I could provide moral support plus visit with some of my church friends. My contribution was an extra hand in setting up the table, then sitting in the sun and holding down a chair for the five hours of the festival. I think I did a good job holding down that chair, it didn't get up once to run away.
I had also made my usual contributions to the bake sale table. I had not volunteered to work any of the church's tables because I can no longer handle money transactions. I would either cause irate customers who were short-changed or very happy customers who got back more in change than they had initially handed to me. Many people love my baked goods and my chocolate layer cake with peanut butter frosting is usually the first thing off the table. That part of the day made me feel good, that I could still make it!
Back to those hurtful words. One of the first hurtful things was when I overheard someone say was "Look now she is using her cane. She wasn't using it before." Technically, she was correct. When my hands were full of the baked goods when unloading them from the car, walking three feet and handing them to the women, I was not able to use my cane and took the risk falling. I didn't think it was my responsibility to explain that the cane is for when my sense of balance disappears or one of my legs doesn't get the signal from my brain to move. This does not occur constantly and sometimes I take the risk. I could have turned around and explained this, but figured anyone thoughtless enough to comment on it wouldn't believe me anyway, nor try to understand.
Of course there was the old reliable "You look wonderful!" Heard this one a couple times. While veiled as a complement, when coupled with the skeptical look that adds "Are you sure you are sick?" it truly hurts. What am I to do? Should I stop dressing nicely, fixing my hair and applying a little makeup to try to look a little better so that they can believe there is something wrong with me?
Throughout the entire event, there was also something going on that made me quite uncomfortable. I will not go in to the details because if anyone from the church reads this, it will be obvious whom I speaking about. Unlike others, who don't think before they speak, I, the one with no impulse control or filter between mouth and brain, will restrain my fingers from typing the hurtful thing that continued through the entire five hours. I will just hint that it involved feeling like this person's constant stare was boring a hole straight through my heart and sole. This was from a distance, so I could not hear any words being said, but knowing that this person talks even more than I do, I am confident that they were being said.
What it boils down to is that in some cases, you don't have to actually hear the hurtful words when you can read them in the other person's eyes and the look on their face. I had intended to visit the table where this person was working, but opted to stay away, because without a filter between mouth and brain, I know I would have said some hurtful words and I would not want to do that to anyone if I was able to help it.
Friday, May 20, 2016
My Story Retold
I was recently asked to write "My Story" to be published by Dementia Symptom Perspectives.
It was published online by them and then shared again by another online site that publishes things written about FTD. They have also reposted some of my blog entries from time to time. I always say, every time I write something that if it reaches just one person, it is worth doing. It worked, I received a message from someone who had just been diagnosed with FTD and she was desperate for information. Also last week, I received a lovely message from someone who had discovered this blog and just wanted to thank me for sharing my information which was helping them understand FTD and learning how to help the family member who was just diagnosed.
Anyway, I thought I would post a copy of "My Story" here in my blog?
Everyone who has been diagnosed with Frontotemporal Dementia has a story. My story is no more important than anyone else’s and is probably not that unique when it comes right down to it. To me, however, it is a story that encompasses most of my life.
It started when, as a teenager, I came to realize there was something wrong with Grandma. I watched my grandma disappear a little at a time as dementia slowly destroyed and eventually took her life. Years later, it was my mother. A few more years and it was my favorite aunt. I was a part time caregiver for all of them. Their brother also was stolen by dementia. They were all diagnosed with Alzheimer’s Disease, but knowing what I do now, I truly believe it was FTD.
Eleven years ago, my husband, retired early. He sat me down one day and said “You have followed me and my career all over the country, now it is your turn to choose where we live.” I didn’t even think about it, I said “Take me home.” It wasn’t long until we did exactly that, returning to the small city in the central part of Pennsylvania. Population 45,000. After living in many large cities across the country, it came as a culture shock to us. In a few years, we would learn that living in a smaller town, while it has many benefits, has one huge downfall.
I went to work as an accountant. I worked there, I am guessing about six years. It was an easy drive from home, a direct route with just four turns. Six years ago, during the busy tax season, it became my habit to stop at a local convenience store for a giant cup of coffee to get me through the morning. I realized that I was struggling with that simple purchase almost daily. I solved it by buying store gift cards so that when I went in, that was all I took in with me. I should have, but didn’t, stop to wonder why it was happening.
A few months later when driving to work and the street I turned on to go up to the office was closed. I drove another block and turned up the next street, which is the street I usually came down at the end of the day to head home. The office was only two blocks up that hill on the avenue between the two streets. Driving up the hill, I started to panic because I was lost. I pulled to the side of the street and tried to work it out in my head and couldn’t do it. Finally, I drove slowly to the end of that second block, saw the ballfield at the corner and realized where I was. This led to getting lost when it was my turn to make the lunch run. I could find my way to the deli, but not the way back. A couple months later I stopped driving altogether after nearly causing several accidents. Soon after, I was blindsided at work and was fired. Although I understood why, it was handled in an ugly manner, leaving me devastated, embarrassed and unemployable.
I was around 55 at that time, the same age my grandma and mother were when Their dementia became obvious. I made an appointment with my family doctor who referred me to a local neurologist. He sent me to a neuro psychologist for testing and both diagnosed depression and insisted I was too young for Alzheimer’s or dementia. Yes, supposedly the best neurologist in town actually said that. I went to a second neurologist who concurred with the first one after a two or three minute exam. Now, I knew the largest downfall of living in a small city: not many good doctors. My family doctor, though, knew me well enough to insist it was not depression and she sent me to a neuro-psychiatrist in Pittsburgh about 90 miles away.
After a SPECT brain scan, he immediately diagnosed FTD . (He later added MND,Motor Neuron Disease). No doubt in his mind, that was it. He showed us the pictures of my brain and the next words to us were “Go home and start living you life while you still can.” He later changed my diagnosis, BvFTD w/MND (Motor Neuron Disease). Since I was unemployed, I had a lot of time to investigate FTD. Every time I read something new, I would say “Yep, that’s me!” I learned from reading that the drugs for Alzheimer’s were contraindicated for FTD and insisted on weaning off them. It was an improvement as my mind seemed more clear without them.
I enrolled in a dementia research program in Pittsburgh. Later I learned that their focus was only Alzheimer’s Disease. After two years and four visits, they basically said there was nothing wrong with me because I had passed the memory tests with flying colors. Knowing that FTD did not usually destroy the memory until the later stages, it was totally frustrating that they did not take that into consideration. As a result, the local doctors actually became correct. The cavalier way of these doctors treating me sent me spiraling down into depression. I was very lucky and learned of a psychologist, right in our tiny little town, who specializes in dementia. I only see her once a month now, but will continue seeing her as long as she is willing. She grounds me by helping me deal with the daily frustrations of coping with FTD, and there are many. The biggest frustration is not wanting to rely on others. Even in childhood, I wanted to do it all myself. This has been a difficult transition .and she has become one of my lifelines.
I found another lifeline, this time on the internet. I was invited to join an online support group for those with a confirmed diagnosis of FTD. These new friends are the only ones who truly understand what it is like to deal with the constant issues that arise with FTD. Their advice has been extraordinary. If I didn’t have them to “talk” to, I would most likely be at the psychologist’s office daily.
Every specialist would collect my money and say “Sorry, there is nothing we can do, but please come back in three months.” I decided to give up seeing all the specialists and now only see my family doctor and psychologist. My husband became my primary care partner along with my daughter, though she has to help from three states away. They are my strongest lifeline ever.
When you have an appointment with a new healthcare professional, go to the first appointment armed with information about FTD and offer to leave the info with them. The good ones will accept it willingly and will actually learn about FTD because they want to help their patient. Do not be afraid to lean on others, your care partners and healthcare partners. This is one time it does not work to be a do-it-myself person. This is a disease we cannot, and should not have to, face alone. I have deliberately not gone into all the symptoms and physical impact of my FTD mainly because I try my best to not complain and there are others who explain those more than I do. I thought it more important to share the story of how I got here.
AFTD Conference and New Friends
There has been so much chaos going on in my life right now (most of it good chaos) that I have been ignoring my blog. It is probably a good sign because that means things have been pretty good since it is usually frustrations that drive me to write a post.
I spent several weeks preparing for a trip to Minneapolis to attend the AFTD (theAFTD.org) conference this past weekend. I managed to do all the planning and arrangements myself. It took a lot of effort and time, but left me feeling like I can indeed still do some things.
The conference was one of the best experiences I have had in a long, long time. The conference is mainly to educate medical professionals, but for a few years now has been open to those diagnosed with FTD and their caregivers. There were over 40 of us with FTD and it was so enjoyable to actually compare stories and get new information from each other. Many from the online support group I have oftened mentioned here before were there, so I was able to meet them. Now they really are my friends, not just Facebook friends.
I discovered that those of us with FTD can have a blast! Being surrounded by others dealing with the same issues make me totally comfortable. This was because I knew if I said or did something stupid that they would understand and laugh right along with me. I laughed more in those two days than I have in years!
The travel went smoothly. My daughter was with me the entire way. She actually took two flights from her home to mine, then the next day took two more with me to the conference. She dedicated six days to my trip, four of them vacation days from work, and spent four of the six on airplanes. Best daughter ever!!!
I was amazed the entire trip how good her instincts are in being my caregiver. She lives several states away, so has not been a full time caregiver before. She was always right there when I needed her, but she did not "hover" which frustrates me when someone does it. She also became friends with several people at the conference and I'll bet will gladly go with me again next year.
I must tell you about "TSA Cares" which is a service provided by the TSA people. You can look it up online by searching for TSA Cares. They have a phone number that you can call 72 hours before your flights. The agents on the phone take your information and ferret out the problems that may arise during your trip. In both Minneapolis and Pittsburgh, that assistance included an agent meeting us as soon as we entered the airport. Also waiting was a wheelchair and attendant. The agent walked us right through the TSA lines, explaining the entire time what I needed to be doing. I only had to wait for one person to be screened ahead of time.
In Minneapolis, our return flight was early in the morning and we did not have breakfast before we left the hotel. The agent recommended an airport restaurant (and what a delicious choice it was!) and arranged for the wheelchair attendant to take us there, then return 45 minutes later to deliver us to the gate.
For all the horror stories in the news media about TSA, I was amazed by this service and how smoothly everything went. Sometimes our government actually does something right. I even sent a message to my congressman to tell him what a great experience it was. I figure with all the complaints they get about the screening process, it would be nice for him to hear about something good.
I did have a few falls over the few days. Two of them were while trying to deplane, once in the jetway leaving our main flight and the other trying to deplane from the very small commuter flight that finished off our flight. Fortunately with that one, I fell backward and landed with my butt on the step I had just come down. Yes, it was quite amusing and not dangerous at all. The jetway fall could have been serious, but I came away with just sore muscles and a bruised hip.
Our online support group got together the night before the conference at an Irish Pub. It required crossing two busy, 4-lane streets. Crossing from the hotel to the pub, it was dicey. The crossing signal only gives about 20 seconds to cross the wide street. With my shaky balance, it was quite a challenge, but we made it! The interesting thing, and why I go into this story, is that I actually had two small drinks at the pub with dinner. I rarely, rarely drink and when I do, it is only one lightweight drink. After those two drinks, crossing back over the streets to the hotel was easy-peasy. Made it with seconds left over and didn't stumble once. Perhaps that is the secret to dealing with FTD? Wishful thinking, I know, and I wouldn't want to start drinking all the time anyway!
Next year the conference is in Baltimore, only 1 1/2 hours away and I am counting the months. At least I'm not counting the days yet!
I spent several weeks preparing for a trip to Minneapolis to attend the AFTD (theAFTD.org) conference this past weekend. I managed to do all the planning and arrangements myself. It took a lot of effort and time, but left me feeling like I can indeed still do some things.
The conference was one of the best experiences I have had in a long, long time. The conference is mainly to educate medical professionals, but for a few years now has been open to those diagnosed with FTD and their caregivers. There were over 40 of us with FTD and it was so enjoyable to actually compare stories and get new information from each other. Many from the online support group I have oftened mentioned here before were there, so I was able to meet them. Now they really are my friends, not just Facebook friends.
I discovered that those of us with FTD can have a blast! Being surrounded by others dealing with the same issues make me totally comfortable. This was because I knew if I said or did something stupid that they would understand and laugh right along with me. I laughed more in those two days than I have in years!
The travel went smoothly. My daughter was with me the entire way. She actually took two flights from her home to mine, then the next day took two more with me to the conference. She dedicated six days to my trip, four of them vacation days from work, and spent four of the six on airplanes. Best daughter ever!!!
I was amazed the entire trip how good her instincts are in being my caregiver. She lives several states away, so has not been a full time caregiver before. She was always right there when I needed her, but she did not "hover" which frustrates me when someone does it. She also became friends with several people at the conference and I'll bet will gladly go with me again next year.
I must tell you about "TSA Cares" which is a service provided by the TSA people. You can look it up online by searching for TSA Cares. They have a phone number that you can call 72 hours before your flights. The agents on the phone take your information and ferret out the problems that may arise during your trip. In both Minneapolis and Pittsburgh, that assistance included an agent meeting us as soon as we entered the airport. Also waiting was a wheelchair and attendant. The agent walked us right through the TSA lines, explaining the entire time what I needed to be doing. I only had to wait for one person to be screened ahead of time.
In Minneapolis, our return flight was early in the morning and we did not have breakfast before we left the hotel. The agent recommended an airport restaurant (and what a delicious choice it was!) and arranged for the wheelchair attendant to take us there, then return 45 minutes later to deliver us to the gate.
For all the horror stories in the news media about TSA, I was amazed by this service and how smoothly everything went. Sometimes our government actually does something right. I even sent a message to my congressman to tell him what a great experience it was. I figure with all the complaints they get about the screening process, it would be nice for him to hear about something good.
I did have a few falls over the few days. Two of them were while trying to deplane, once in the jetway leaving our main flight and the other trying to deplane from the very small commuter flight that finished off our flight. Fortunately with that one, I fell backward and landed with my butt on the step I had just come down. Yes, it was quite amusing and not dangerous at all. The jetway fall could have been serious, but I came away with just sore muscles and a bruised hip.
Our online support group got together the night before the conference at an Irish Pub. It required crossing two busy, 4-lane streets. Crossing from the hotel to the pub, it was dicey. The crossing signal only gives about 20 seconds to cross the wide street. With my shaky balance, it was quite a challenge, but we made it! The interesting thing, and why I go into this story, is that I actually had two small drinks at the pub with dinner. I rarely, rarely drink and when I do, it is only one lightweight drink. After those two drinks, crossing back over the streets to the hotel was easy-peasy. Made it with seconds left over and didn't stumble once. Perhaps that is the secret to dealing with FTD? Wishful thinking, I know, and I wouldn't want to start drinking all the time anyway!
Next year the conference is in Baltimore, only 1 1/2 hours away and I am counting the months. At least I'm not counting the days yet!
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