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.
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