Yesterday was a really bad day for me for some reason. I just was feeling "out of sorts," restless and eventually was suffering from sensory overload.
I tried dealing with the restlessness by finding a task to do that I could accomplish on my own. I think I have mentioned previously that I used to, when I got in a mood like this, go create something... paint something or create a different art craft project. Since I can't do those things anymore, I decided to paint a wall in our family room that I have been meaning to do for a few weeks. I went downstairs and gathered up all the stuff I needed and headed into the room. Unfortunately, my husband was in that room watching a football game and the looks from him I got were not exactly encouraging. Since the wall I wanted to paint would not block his view and painting isn't very noisy, I decided to go ahead with it. But then, he paused the game and got up to help me with it. That was the end of that project. His desire to help me was going to undo the feeling of accomplishment that I was looking for. His help and support are usually just what I need, but not then. All the painting supplies got set aside.
I did, then, go into the dining room and do a thorough cleaning on all our antique dining room chairs. Kept me busy for a while, but didn't achieve the desired effect. I tried sitting down to read, but there were just too many conflicting noises, thus began the sensory overload. I went outside in the quiet backyard, then the new neighbors starting working outside and talking quite loudly. By then I was feeling like pulling my hair out, just totally frustrated. It was close to dinnertime by then, so I had to tackle a decision of what's for dinner. Decisions are difficult on good days! I pulled it off though, fixed a creative and healthy meal with lots of depth of flavor... just what I love in a good meal. That actually helped some, being able to create something new and different to cook and it did end up making me feel like I had accomplished something.
Reading this, it seems like "what was the big deal"? The day doesn't sound so bad to someone not dealing with FTD. It is simply all the little frustrations of not being able to do the things I used to do sometimes leads to a little feeling sorry for myself.
That is the difference between a bad day and a good day. I need to focus on the things I can do and admit to myself and others what I can no longer do. This is something my therapist and I are working on. I have actually succeeded in doing it a couple times this week. Today became a better day when I admitted to my husband that I was not sure I could cope with going to the grocery store today, but that I was willing to try. He assured me that if it got too much for me, he would take me to the car and go back and finish up by himself. It turned out that the store was not overly crowded and we did not encounter anyone I had to try to converse with, so I made it through just fine! I even managed not to panic when I realized he was no longer with me. He had stayed behind to compare a couple different items and didn't realize I had continued on. I stopped where I was, moved a bit out of the way, and waited calmly until he reappeared. I also was able to calmly remind him that things like that make me panic. Small steps... they are sometimes the difference between a bad day and a good day.
Sunday, August 31, 2014
Thursday, August 28, 2014
Circle of Support
A couple more points on the I Have FTD list I referred to in my last post, deal with what I call "my circle of support" or "circle of trust." The list items are "Pick Your Battles" and "Address Changing Relationships." Their points are that FTD and other dementias definitely change your interpersonal relationships and that not everyone in your life will understand FTD.
I have found that many people don't understand me or what I am going through, and don't care to make an effort to find out. People that I thought I could count on have disappointed me, but others who I never expected to help or understand have really surprised me in a good way. I do not harbor any ill will against those who have disappointed me. FTD is a difficult concept to comprehend, especially when most people automatically think "Alzheimers" when they hear "dementia." I can tell you what I had for breakfast. I can tell you where I do my grocery shopping. On a good day, I can probably even tell you how you can find it. Just don't ask me to get myself there... I would most likely get lost... might even step in front of a moving car in the parking lot. I would probably remember what I was there to buy... but I would have trouble figuring out how much money I needed to pay for it. The things my dementia have stolen from me are not things that are easy to see or understand.
Other people in my life have actually taken the time and made the effort to learn about FTD or shown an interest and learned about it from me. I have a Facebook friend. We became "friends" because we were playing the same game and had connected through other friends to assist each other in the game. We have never met in person (but we will some day) as we live several states apart, but through one of those miracles of social networking, I count her as a "real" friend, and a close one at that. She is one who has stepped forward and asked the right questions and has learned a bit about FTD and has expressed concern many times. When she hasn't "seen" me online for a few days, she will message me and ask what's wrong. Of course I do the same with her. Today, she asked for the link to this blog so that she could understand even more. That simple act made me happier than she can ever imagine. Another person who has stepped up for me is someone that I had a client relationship with when I was still able to work. I don't remember if I have mentioned that I was working in the accounting field, but this person was one of our clients. He has been so supportive of me and we now have a totally different relationship. A hug from him on a bad day can turn everything around for me!
These are the people I focus on and thank God I have them in my life. I can't rely on just my husband, daughter and sister for everything in my life. They would fill that role for me if I needed them to, but it's better to expand my circle of trust as much as I can. To any of you also dealing with FTD, don't be afraid to let someone in. Yes, they may end up letting you down, but it's worth the risk... and you can always kick them back out of the circle. Relationships can be fluid, changing as they go. Unfortunately some dry up and go away, but there's always another one out there if you take a chance on them.
I have found that many people don't understand me or what I am going through, and don't care to make an effort to find out. People that I thought I could count on have disappointed me, but others who I never expected to help or understand have really surprised me in a good way. I do not harbor any ill will against those who have disappointed me. FTD is a difficult concept to comprehend, especially when most people automatically think "Alzheimers" when they hear "dementia." I can tell you what I had for breakfast. I can tell you where I do my grocery shopping. On a good day, I can probably even tell you how you can find it. Just don't ask me to get myself there... I would most likely get lost... might even step in front of a moving car in the parking lot. I would probably remember what I was there to buy... but I would have trouble figuring out how much money I needed to pay for it. The things my dementia have stolen from me are not things that are easy to see or understand.
Other people in my life have actually taken the time and made the effort to learn about FTD or shown an interest and learned about it from me. I have a Facebook friend. We became "friends" because we were playing the same game and had connected through other friends to assist each other in the game. We have never met in person (but we will some day) as we live several states apart, but through one of those miracles of social networking, I count her as a "real" friend, and a close one at that. She is one who has stepped forward and asked the right questions and has learned a bit about FTD and has expressed concern many times. When she hasn't "seen" me online for a few days, she will message me and ask what's wrong. Of course I do the same with her. Today, she asked for the link to this blog so that she could understand even more. That simple act made me happier than she can ever imagine. Another person who has stepped up for me is someone that I had a client relationship with when I was still able to work. I don't remember if I have mentioned that I was working in the accounting field, but this person was one of our clients. He has been so supportive of me and we now have a totally different relationship. A hug from him on a bad day can turn everything around for me!
These are the people I focus on and thank God I have them in my life. I can't rely on just my husband, daughter and sister for everything in my life. They would fill that role for me if I needed them to, but it's better to expand my circle of trust as much as I can. To any of you also dealing with FTD, don't be afraid to let someone in. Yes, they may end up letting you down, but it's worth the risk... and you can always kick them back out of the circle. Relationships can be fluid, changing as they go. Unfortunately some dry up and go away, but there's always another one out there if you take a chance on them.
Saturday, August 23, 2014
Mourn the Losses...
I found another source of information today at www.theaftd.org. Most of the information I found there is stuff I have learned elsewhere. Somehow, the bottom line always seems to be that not much is known about it. So sad, but I'm not going there today. They do, however, have a category of information called "I Have FTD" written from suggestions from people who have FTD, along with their family and friends.
I found an interesting list of "Suggestions From People with FTD." The first one that jumped out at me is "Mourn the Losses. Acknowledge the changes as you become unable to do as many things. Express the sadness and then refocus on what you can still do."
What an interesting way to look at it! Instead of just becoming totally frustrated at the things I can't do anymore, feel bad about it, but don't dwell on it. Focus on what I can still do. Obviously, for me, one of the things I can still do is writing. Verbal skills have slipped, especially when trying to talk or explain things to people outside my limited circle of trust. That circle includes the few that actually understand the disease and I am totally comfortable that they are non-judgmental. I trust these people to understand if I mess up my words or can't explain things, or do things that aren't "normal." The written word is much easier, as I can easily substitute a different word when I can't think of the right word, or just sit here until I can think of it. There aren't really any do-overs when you are speaking like there are when writing.
There are things I have kept in my daily routine that have been there for years. I have always done the crossword puzzle in the daily paper, as well as the Sudoku number puzzle. It was always fairly mindless stuff I could do with my first cup of coffee in the morning. I wish it was still mindless. The crossword puzzle is still easy for me since my word skills have not disappeared like my number skills have. I struggle with the Sudoku almost every day, but am stubborn enough to keep at it. I have gotten better at not letting it frustrate me when the puzzle defeats me, and this item on their list just reinforces this. If I can't do it, so what? It was still exercising my brain and I can move on to the crossword for something easier to do.
I have really been mourning the loss of my ability to be artistic. I can no longer paint or create ceramic arts the way I have always loved. I just can't do the detail work these hobbies require. It has been difficult to go from winning awards for my work to not being able to do it. Doubtlessly, a lesson in humility! I have mourned the loss of these abilities long enough, time to pack the regrets away in a box and put it up on the shelf. There are still other things I can do well, and those are what I need to dwell on. I will keep working on it!
I also thank God every day that I can still read. My Nook and I seem to be permanently attached to each other!
There are a couple other thought-provoking things on their list that I think will help me, but I'll save those to share on another day.
I found an interesting list of "Suggestions From People with FTD." The first one that jumped out at me is "Mourn the Losses. Acknowledge the changes as you become unable to do as many things. Express the sadness and then refocus on what you can still do."
What an interesting way to look at it! Instead of just becoming totally frustrated at the things I can't do anymore, feel bad about it, but don't dwell on it. Focus on what I can still do. Obviously, for me, one of the things I can still do is writing. Verbal skills have slipped, especially when trying to talk or explain things to people outside my limited circle of trust. That circle includes the few that actually understand the disease and I am totally comfortable that they are non-judgmental. I trust these people to understand if I mess up my words or can't explain things, or do things that aren't "normal." The written word is much easier, as I can easily substitute a different word when I can't think of the right word, or just sit here until I can think of it. There aren't really any do-overs when you are speaking like there are when writing.
There are things I have kept in my daily routine that have been there for years. I have always done the crossword puzzle in the daily paper, as well as the Sudoku number puzzle. It was always fairly mindless stuff I could do with my first cup of coffee in the morning. I wish it was still mindless. The crossword puzzle is still easy for me since my word skills have not disappeared like my number skills have. I struggle with the Sudoku almost every day, but am stubborn enough to keep at it. I have gotten better at not letting it frustrate me when the puzzle defeats me, and this item on their list just reinforces this. If I can't do it, so what? It was still exercising my brain and I can move on to the crossword for something easier to do.
I have really been mourning the loss of my ability to be artistic. I can no longer paint or create ceramic arts the way I have always loved. I just can't do the detail work these hobbies require. It has been difficult to go from winning awards for my work to not being able to do it. Doubtlessly, a lesson in humility! I have mourned the loss of these abilities long enough, time to pack the regrets away in a box and put it up on the shelf. There are still other things I can do well, and those are what I need to dwell on. I will keep working on it!
I also thank God every day that I can still read. My Nook and I seem to be permanently attached to each other!
There are a couple other thought-provoking things on their list that I think will help me, but I'll save those to share on another day.
Tuesday, August 19, 2014
We Are In This Together
I was planning on posting today, and was going to talk about depression. My former brother in law once told me that Winston Churchill used to call his depression the "Black Dog," as in he was fighting the black dog. Pretty close, I have always called mine the black demon. It hits me and starts taking over these days due to frustrations. Every time I find I can't do something, or figure something out, I let it bounce around in my mind until I get to feeling really down about it.
Yesterday, it was because my husband forgets, or just can't grasp, that I can only focus on one thing at a time. I was talking on the phone with my sister and he started asking me questions about my computer. First of all, I find that rude, but understand that he was frustrated as he was trying to accomplish a task that he couldn't do on his old dinosaur of a computer. I told him to just click on the option to the right, but he kept trying to clarify it, which confused me and meant I had to stop talking to my sister and move to a different room and literally show him where the box was. I think it is a man vs. woman thing. Of course, by then I was totally frustrated and annoyed and lashed out. Then we went to the grocery store and I got confused with the checkout process which I know should be a simple thing and was something I used to do without even having to think about it. For some reason, trying to remember the coupons and figuring out how much I needed to pay totally confused me. After getting home and struggling to find a place to store everything, I ended up spiraling down into a deep funk. Later, my husband found me curled up in a semi-fetal position on my bed. He came in, encouraging me to come out to eat some dinner since I hadn't eaten all day. When I balked at it, saying I just couldn't do it, he sat down next to me, put his hand on my shoulder and said, "remember, we are in this together you are never alone in this." Wow! Simple words that made all the difference in the world to me.
Today I watched a video on Facebook made by a gentleman, appearing to be about my age (early 60's). He was talking about a similar issue for him. He had to keep reminding himself that he was not the only one being affected by his dementia, that it was a huge burden on his wife as well.
That made me realize that the focus of this post should be more positive than talking about depression. It's about allowing someone else to help and realizing that the other person, your caregiver or partner, is feeling the frustration right along with you. Plus, the good news is, there is nothing we can't do together. We've been doing it for 42 years now, and he's not about to give up on me! Got to love this man!
Yesterday, it was because my husband forgets, or just can't grasp, that I can only focus on one thing at a time. I was talking on the phone with my sister and he started asking me questions about my computer. First of all, I find that rude, but understand that he was frustrated as he was trying to accomplish a task that he couldn't do on his old dinosaur of a computer. I told him to just click on the option to the right, but he kept trying to clarify it, which confused me and meant I had to stop talking to my sister and move to a different room and literally show him where the box was. I think it is a man vs. woman thing. Of course, by then I was totally frustrated and annoyed and lashed out. Then we went to the grocery store and I got confused with the checkout process which I know should be a simple thing and was something I used to do without even having to think about it. For some reason, trying to remember the coupons and figuring out how much I needed to pay totally confused me. After getting home and struggling to find a place to store everything, I ended up spiraling down into a deep funk. Later, my husband found me curled up in a semi-fetal position on my bed. He came in, encouraging me to come out to eat some dinner since I hadn't eaten all day. When I balked at it, saying I just couldn't do it, he sat down next to me, put his hand on my shoulder and said, "remember, we are in this together you are never alone in this." Wow! Simple words that made all the difference in the world to me.
Today I watched a video on Facebook made by a gentleman, appearing to be about my age (early 60's). He was talking about a similar issue for him. He had to keep reminding himself that he was not the only one being affected by his dementia, that it was a huge burden on his wife as well.
That made me realize that the focus of this post should be more positive than talking about depression. It's about allowing someone else to help and realizing that the other person, your caregiver or partner, is feeling the frustration right along with you. Plus, the good news is, there is nothing we can't do together. We've been doing it for 42 years now, and he's not about to give up on me! Got to love this man!
Saturday, August 16, 2014
Decisions, Decisions, Decisions...
I now hate making decisions. I hate making decisions because I can't make decisions, not because I don't want to make them. My husband has always pretty much left all the decision making about things, especially anything to do with the home, up to me. Since he would work 12+ hour days at his office, then come home and work a few more, he just didn't have the time or energy to deal with them. And, I will admit, because if I made them and they weren't right, I couldn't blame him. Who? Me?
My sister is learning to deal with this problem. After quite a few tearful experiences, she now will narrow things down to two options and offer them for me to choose. If I still can't decide, she decides for us, when she can. This happened when we were out shopping the other day. I had already decided which jeans I wanted to buy. Doesn't sound like much of a decision, does it? But it counts. Then she asked my opintion between two shirts she was considering. Those two decisions I was able to make. But when we were finished shopping and were heading to lunch, deciding where to go became too much for me. She again narrowed it down to two, but I said that I just couldn't handle another decision. So she decided, though she picked the safest alternative, our usual go to spot for lunch. She realized if I was overloaded that I could not make a decision, the quietest place and the most familiar place was the best. My husband is learning too, but it's taking a little longer since he has relied on my decision making for 42 years. Yes, they both still get frustrated some times when I can't decide, but we are learning...
My suggestion to you if you are dealing with someone with dementia? Narrow down the options as much as you can, hopefully to just two. If you can't do that, have the person help you eliminate definite no's. Then wait for a while, even if only a few minutes, before addressing it again. Don't allow it to come to the point of them becoming totally frustrated. Obviously, if it is a life or death, or a very important decision that needs to made immediately, make the choice for them. If you choose the wrong one, it will be okay.
My sister is learning to deal with this problem. After quite a few tearful experiences, she now will narrow things down to two options and offer them for me to choose. If I still can't decide, she decides for us, when she can. This happened when we were out shopping the other day. I had already decided which jeans I wanted to buy. Doesn't sound like much of a decision, does it? But it counts. Then she asked my opintion between two shirts she was considering. Those two decisions I was able to make. But when we were finished shopping and were heading to lunch, deciding where to go became too much for me. She again narrowed it down to two, but I said that I just couldn't handle another decision. So she decided, though she picked the safest alternative, our usual go to spot for lunch. She realized if I was overloaded that I could not make a decision, the quietest place and the most familiar place was the best. My husband is learning too, but it's taking a little longer since he has relied on my decision making for 42 years. Yes, they both still get frustrated some times when I can't decide, but we are learning...
My suggestion to you if you are dealing with someone with dementia? Narrow down the options as much as you can, hopefully to just two. If you can't do that, have the person help you eliminate definite no's. Then wait for a while, even if only a few minutes, before addressing it again. Don't allow it to come to the point of them becoming totally frustrated. Obviously, if it is a life or death, or a very important decision that needs to made immediately, make the choice for them. If you choose the wrong one, it will be okay.
Sunday, August 10, 2014
Definitely Not a Social Animal
I was so very relieved when I learned a while back that another symptom of Fronto-Temporal Lobe Dementia is the lack of, or fear of, socializing. By the time I had this information, I had already pulled away from most of my friends, and no, most of them do not understand even though they are aware of my disease. Socializing has become so stressful and frightening to me, I find it very difficult. I am constantly afraid I will say or do the wrong thing or make the other people uncomfortable. It also can become confusing to me if there are too many people around, or if there is a noisy background or just too many things or conversations going on at once. I just can't handle it well, become agitated and desperate to get away or hide.
That being said, yesterday was a true gift. Good friends of ours (he worked with my husband, until my husband retired, in three different cities... Pittsburgh PA, Philadelphia PA and Charleston IL. After retirement, my husband and I returned to PA, to my home town area, while they remained in Illinois. Yesterday we were invited to our friend's parents house to visit with him and his family just two hours away. We had not seen any of them for at least two years. It was such a blessing to catch up with them. We know each other well enough that I didn't have to worry at all about what I said, what I did, if I looked like I was drunk when walking, nothing. If I had done something (or maybe I did, I'm not sure) they are the kind of people who wouldn't care one bit! There were three generations of them there, the oldest is 88 and the youngest 9 and I think we all had a really great time. But once it was time for the Steelers preseason game to begin, it was time for us to leave so they didn't miss the game. Fortunately, we were recording the game at home!
If you are dealing with someone with FTD, or any dementia most likely, it is important to keep this in mind. Try to keep social occasions in a calm, quiet place with few distractions and, if possible, in a familiar place. Perhaps point out where the restrooms are and find them a comfortable spot. Do encourage, but not pressure, them to join in and do not criticize them if they do something out of the ordinary or if they don't want to join in the activities or conversations. Reassure them that you love them and want them there with you if need be.
I am lucky that my husband understands all this. There is nothing like it, when he touches me and just asks if I'm doing okay, always with a smile!
That being said, yesterday was a true gift. Good friends of ours (he worked with my husband, until my husband retired, in three different cities... Pittsburgh PA, Philadelphia PA and Charleston IL. After retirement, my husband and I returned to PA, to my home town area, while they remained in Illinois. Yesterday we were invited to our friend's parents house to visit with him and his family just two hours away. We had not seen any of them for at least two years. It was such a blessing to catch up with them. We know each other well enough that I didn't have to worry at all about what I said, what I did, if I looked like I was drunk when walking, nothing. If I had done something (or maybe I did, I'm not sure) they are the kind of people who wouldn't care one bit! There were three generations of them there, the oldest is 88 and the youngest 9 and I think we all had a really great time. But once it was time for the Steelers preseason game to begin, it was time for us to leave so they didn't miss the game. Fortunately, we were recording the game at home!
If you are dealing with someone with FTD, or any dementia most likely, it is important to keep this in mind. Try to keep social occasions in a calm, quiet place with few distractions and, if possible, in a familiar place. Perhaps point out where the restrooms are and find them a comfortable spot. Do encourage, but not pressure, them to join in and do not criticize them if they do something out of the ordinary or if they don't want to join in the activities or conversations. Reassure them that you love them and want them there with you if need be.
I am lucky that my husband understands all this. There is nothing like it, when he touches me and just asks if I'm doing okay, always with a smile!
Thursday, August 7, 2014
August 7, 2014 Too Good to Be True?
I have always been a skeptic. That's probably why I loved math and science... things that can be proven. I also believe that I have the best chiropractor ever. She helps me with back pain, headaches, all the normal chiropractic miracles, as well as mentors me on stress reduction, nutrition and vitamins. When she proposed scanning my brain with a software package she has been successfully using, I decided it was worth doing.
Today, she went over the results with me. Hmmm... showed deficiencies in the front and right temporal lobe. Interesting, since that's also what SPECT tests have also shown and this did not require radioactive tracers or radiation exposure! Next step she has proposed is treatments based on the findings, specifically brain stimulation techniques. I have seen other patients utilizing the treatments and it all appears totally harmless. It's not chiropractic manipulations or anything physical, just mental exercises and such.
Now, I just have to get my husband on board since he will have to drive me there twice a week now instead of once every two weeks. He is totally supportive of mes though, so I'm sure that won't be a problem even though he is ten times the skeptic I am. I will keep you updated on the progress as we go along.
I am quite thankful that I have this encouraging possibility presented today. It took the edge off of a frustrating experience. I tried to make a purchase at the pharmacy for $1.58, using cash, and it totally befuddled me. My husband stepped up and assisted me, but I ended up embarrassed and frustrated. I am focusing on the positive!!!
Today, she went over the results with me. Hmmm... showed deficiencies in the front and right temporal lobe. Interesting, since that's also what SPECT tests have also shown and this did not require radioactive tracers or radiation exposure! Next step she has proposed is treatments based on the findings, specifically brain stimulation techniques. I have seen other patients utilizing the treatments and it all appears totally harmless. It's not chiropractic manipulations or anything physical, just mental exercises and such.
Now, I just have to get my husband on board since he will have to drive me there twice a week now instead of once every two weeks. He is totally supportive of mes though, so I'm sure that won't be a problem even though he is ten times the skeptic I am. I will keep you updated on the progress as we go along.
I am quite thankful that I have this encouraging possibility presented today. It took the edge off of a frustrating experience. I tried to make a purchase at the pharmacy for $1.58, using cash, and it totally befuddled me. My husband stepped up and assisted me, but I ended up embarrassed and frustrated. I am focusing on the positive!!!
Tuesday, August 5, 2014
Have Fun... It Might Help!
I have been given software to help improve brain function by both a neuro-psychiatrist and my insurance company. It is supposed to be fun, easy to use and great for stimulating brain function. Only problem??? They were sooooo boring that I would dread doing them. Then I read online that the particular software was developed to improve driving ability in older adults. I realized then that at least two of the "games" were to increase field of vision. I figured I was just wasting my time, plus if they were so boring, how much brain function could they possibly be stimulating. My solution? I started playing games on Facebook, silly fun games that require quick thinking and hand-eye coordination. My two favorites are Zuma Blitz and Solitaire Blitz. They are both entertaining to me and both seem much more brain stimulating than the medical software games were. Plus, I enjoy myself!
I also read a lot. I have always enjoyed reading, and now I can justify to myself that's it's okay to just sit and read when I want to! Just about any genre of books can't help but stimulate the brain and keep it active. I'm always learning new tidbits of information when I read. I don't have a medical degree, but it sure makes a lot of sense to me that this must help, and sometimes common sense is the best thing we have going for us.
I also read a lot. I have always enjoyed reading, and now I can justify to myself that's it's okay to just sit and read when I want to! Just about any genre of books can't help but stimulate the brain and keep it active. I'm always learning new tidbits of information when I read. I don't have a medical degree, but it sure makes a lot of sense to me that this must help, and sometimes common sense is the best thing we have going for us.
Sunday, August 3, 2014
Memory Isn't the Only Thing Affected
I was printing off some information on FTD for my chiropractor to read just now, and thought I would share this link:
http://www.nia.nih.gov/sites/default/files/frontotemporal_disorders_information_for_patients_families_and_caregivers_0.pdf
Looks like you will have to cut and paste to check it out. It is a booklet produced by National Institute on Aging and the National Institutes of Health. It does a pretty decent job of explaining FTD. Many people have never heard of FTD, but are perhaps familiar with the terms "Pick's Disease"or "Huntingdon's Disease." These are both types of Fronto Temporal Lobe Dementia (FTD or FTLD).
I have spoken to many people who told me they were certain there was something "wrong" with their brain. One was actually told by a doctor that she was being silly and that she was much too young for Alzheimer's Disease. This was a neurologist who should certainly know better. First of all, there is such a thing as Early Onset Alzheimer's. Secondly, FTD's are often found in younger people. Bottom line, anyone convinced that there is something wrong with their brain, it should not be dismissed by any medical professional.
That brings me to one of my biggest pet peeves. Several friends or acquaintances have been shocked when I could recite a favorite simple recipe or remember something from the past that they had forgotten. Their immediate response is "See, there's nothing wrong with your brain if you can remember that!" I try to explain that I can recite a recipe, I just can't follow it unless someone is with me and helps me measure ingredients and helps me keep track of the steps. Or, since my impulse control is severely limited, I might reach in the oven to remove something, forgetting that I need to use a pot holder. It's not that I don't know what a pot holder is, it's that I know what I want to do and do it without considering consequences. Another example I frequently use is when I go outside to get our mail from the mailbox, which happens to be on the other side of our little street. I just go, I forget I need to stop at the end of the driveway and make sure there is not a vehicle coming. Learned that lesson from a close call with a large truck hauling stone. I try to remember that it must be terribly difficult to understand the difference if one has no knowledge of FTD, only of Alzheimer's. I constantly have to remind myself of that and not show my frustration or anger.
This lack of impulse control goes hand-in-hand with the loss of a filter between brain and mouth... but that's a story for another day...
http://www.nia.nih.gov/sites/default/files/frontotemporal_disorders_information_for_patients_families_and_caregivers_0.pdf
Looks like you will have to cut and paste to check it out. It is a booklet produced by National Institute on Aging and the National Institutes of Health. It does a pretty decent job of explaining FTD. Many people have never heard of FTD, but are perhaps familiar with the terms "Pick's Disease"or "Huntingdon's Disease." These are both types of Fronto Temporal Lobe Dementia (FTD or FTLD).
I have spoken to many people who told me they were certain there was something "wrong" with their brain. One was actually told by a doctor that she was being silly and that she was much too young for Alzheimer's Disease. This was a neurologist who should certainly know better. First of all, there is such a thing as Early Onset Alzheimer's. Secondly, FTD's are often found in younger people. Bottom line, anyone convinced that there is something wrong with their brain, it should not be dismissed by any medical professional.
That brings me to one of my biggest pet peeves. Several friends or acquaintances have been shocked when I could recite a favorite simple recipe or remember something from the past that they had forgotten. Their immediate response is "See, there's nothing wrong with your brain if you can remember that!" I try to explain that I can recite a recipe, I just can't follow it unless someone is with me and helps me measure ingredients and helps me keep track of the steps. Or, since my impulse control is severely limited, I might reach in the oven to remove something, forgetting that I need to use a pot holder. It's not that I don't know what a pot holder is, it's that I know what I want to do and do it without considering consequences. Another example I frequently use is when I go outside to get our mail from the mailbox, which happens to be on the other side of our little street. I just go, I forget I need to stop at the end of the driveway and make sure there is not a vehicle coming. Learned that lesson from a close call with a large truck hauling stone. I try to remember that it must be terribly difficult to understand the difference if one has no knowledge of FTD, only of Alzheimer's. I constantly have to remind myself of that and not show my frustration or anger.
This lack of impulse control goes hand-in-hand with the loss of a filter between brain and mouth... but that's a story for another day...
Saturday, August 2, 2014
Day to Day Frustrations
August 2, 2014
I was looking forward to a good day today. I did some heavy house cleaning yesterday, so I planned on a relaxing Saturday. I sat down with the newspaper and my first cup of coffee. I first became distressed when I attempted to complete the daily Sudoku puzzle. I am a fairly intelligent person and have always loved playing with numbers and prior to my diagnosis of FTD, was employed as an accountant. So when, lately, I began having difficulty completing the Sudoku puzzles, I became frustrated, and this morning was no exception... couldn't do it again. I should take a moment here to mention that with fronto-temporal lobe dementias, the executive functioning of the brain is the first to suffer. This makes it difficult to reason things through, come up with solutions or to learn new tasks.
My next task related to the newspaper, was programming the DirecTV system to record any shows that are not already set up to record each week. This usually includes any specials and the daily Pittsburgh Pirates games. I have been a life-long fan of the Pirates and my husband, who is originally from Illinois and a Cubs fan, has learned that it's much more enjoyable to be a Pirates fan, so we record all the games to make sure we don't miss them. When I started going through the schedule, the games were already set to record, which meant my husband had already done it. I became extremely agitated because I took this to mean that either I had screwed up the recordings last week, or for some other reason, he no longer thought I was capable of doing the job. Of course, this turned out not to be true. He was just setting up some auto races to be recorded and went ahead and did the baseball as well. But, by then, the agitation was settled in too deep to shake it off.
I wasted more than a couple hours stewing about it. I did, finally, come up with some conclusions that will be interesting to discuss with my therapist next week. I realized that my greatest accomplishments these days are that I can still take care of the house and am still a pretty excellent cook. Excuse the bragging on the cooking part, but I am. But these are pretty mundane tasks and not very intellectually stimulating. Of course, neither is programming the DVR, but it was something I was used to doing every Saturday morning. I have always used my intellect in the different jobs I have had through the years and, in addition, I was always a creative and talented person. Used to be, when I would be feeling badly about anything, I would go to my craft room and create something, or paint something. But, I can't do those things anymore. I am so very fortunate to have an extremely supportive husband who is usually able to help me during these times when I am giving up on myself. I ended up doing a couple things around the house that I have been putting off for a couple years which helped almost as much as creating something. Then I went out on the deck, read part of a book and watched the wildlife. At least the end result was a relaxing second half of a Saturday.
I was looking forward to a good day today. I did some heavy house cleaning yesterday, so I planned on a relaxing Saturday. I sat down with the newspaper and my first cup of coffee. I first became distressed when I attempted to complete the daily Sudoku puzzle. I am a fairly intelligent person and have always loved playing with numbers and prior to my diagnosis of FTD, was employed as an accountant. So when, lately, I began having difficulty completing the Sudoku puzzles, I became frustrated, and this morning was no exception... couldn't do it again. I should take a moment here to mention that with fronto-temporal lobe dementias, the executive functioning of the brain is the first to suffer. This makes it difficult to reason things through, come up with solutions or to learn new tasks.
My next task related to the newspaper, was programming the DirecTV system to record any shows that are not already set up to record each week. This usually includes any specials and the daily Pittsburgh Pirates games. I have been a life-long fan of the Pirates and my husband, who is originally from Illinois and a Cubs fan, has learned that it's much more enjoyable to be a Pirates fan, so we record all the games to make sure we don't miss them. When I started going through the schedule, the games were already set to record, which meant my husband had already done it. I became extremely agitated because I took this to mean that either I had screwed up the recordings last week, or for some other reason, he no longer thought I was capable of doing the job. Of course, this turned out not to be true. He was just setting up some auto races to be recorded and went ahead and did the baseball as well. But, by then, the agitation was settled in too deep to shake it off.
I wasted more than a couple hours stewing about it. I did, finally, come up with some conclusions that will be interesting to discuss with my therapist next week. I realized that my greatest accomplishments these days are that I can still take care of the house and am still a pretty excellent cook. Excuse the bragging on the cooking part, but I am. But these are pretty mundane tasks and not very intellectually stimulating. Of course, neither is programming the DVR, but it was something I was used to doing every Saturday morning. I have always used my intellect in the different jobs I have had through the years and, in addition, I was always a creative and talented person. Used to be, when I would be feeling badly about anything, I would go to my craft room and create something, or paint something. But, I can't do those things anymore. I am so very fortunate to have an extremely supportive husband who is usually able to help me during these times when I am giving up on myself. I ended up doing a couple things around the house that I have been putting off for a couple years which helped almost as much as creating something. Then I went out on the deck, read part of a book and watched the wildlife. At least the end result was a relaxing second half of a Saturday.
The Dreaded Diagnosis!
I was diagnosed with FTD, fronto temporal lobe dementia, about three years ago. Just getting the diagnosis was frustrating enough. I had been having some problems for a while, especially dealing with cash transactions in stores. Sometimes when I was the one to make a lunch run from our accounting office, I would have trouble remembering the right streets to take to get back. I finally knew there was definitely something going on when I got lost one morning while driving to work, the same place I had been working for five years, which was a very simple route from my home.
I live in a very small town that borders on a small city in central Pennsylvania. There are not many doctors to choose from. I started with my primary care physician who is an extremely caring and knowledgeable doctor. She agreed there was definitely something going on, and with my family history of Alzheimer's, immediately started me on Aricept and referred me to a local neurologist. The neurologist strongly suspected Alzheimer's Disease (AD), again because of my family history. My maternal grandmother died from AD, followed by my mother, then both of her siblings, so it is a strong family history. The neurologist sent me to a neuro-psychologist for testing, which turned out to be the same testing used to screen for AD. I had done this testing years ago as part of an AD research program in Springfield, IL. The testing was done by a graduate student of nearby Penn State University. I never met the psychologist. He did call me and tell me he was reporting to the neurologist that I didn't have any memory problems, so he believed my problem was depression. Only problem? I never claimed to have any memory problems! During my follow-up visit with the neurologist, he agreed with the depression diagnosis, but then added Namenda, another drug used to treat AD. Excuse me? I am only depressed, but you are loading me up on meds for AD? Something isn't right.
I returned to my family doctor, totally frustrated, and she said, "Cindy, I have seen you depressed, and this is not depression." So we started to try to find a physician in Pittsburgh, about 2 hours driving distance. That doctor, a neuro-psychiatrist who co-chairs an Alzheimer's Disease Research Center, agreed to see me as a private patient and ordered a SPECT exam which provided us, finally, with a diagnosis of fronto temporal lobe dementia (FTD).
This blog will be about the progress of my FTD, the difficulty of finding proper care, and the daily frustrations of dealing with the disease, now and as it progresses. I may bounce around between past frustrations and current daily frustrations, but I will try to not make it confusing. I will even try to build in some information on FTD since it is often overlooked because all the attention is put on AD which has a higher number of patients.
I live in a very small town that borders on a small city in central Pennsylvania. There are not many doctors to choose from. I started with my primary care physician who is an extremely caring and knowledgeable doctor. She agreed there was definitely something going on, and with my family history of Alzheimer's, immediately started me on Aricept and referred me to a local neurologist. The neurologist strongly suspected Alzheimer's Disease (AD), again because of my family history. My maternal grandmother died from AD, followed by my mother, then both of her siblings, so it is a strong family history. The neurologist sent me to a neuro-psychologist for testing, which turned out to be the same testing used to screen for AD. I had done this testing years ago as part of an AD research program in Springfield, IL. The testing was done by a graduate student of nearby Penn State University. I never met the psychologist. He did call me and tell me he was reporting to the neurologist that I didn't have any memory problems, so he believed my problem was depression. Only problem? I never claimed to have any memory problems! During my follow-up visit with the neurologist, he agreed with the depression diagnosis, but then added Namenda, another drug used to treat AD. Excuse me? I am only depressed, but you are loading me up on meds for AD? Something isn't right.
I returned to my family doctor, totally frustrated, and she said, "Cindy, I have seen you depressed, and this is not depression." So we started to try to find a physician in Pittsburgh, about 2 hours driving distance. That doctor, a neuro-psychiatrist who co-chairs an Alzheimer's Disease Research Center, agreed to see me as a private patient and ordered a SPECT exam which provided us, finally, with a diagnosis of fronto temporal lobe dementia (FTD).
This blog will be about the progress of my FTD, the difficulty of finding proper care, and the daily frustrations of dealing with the disease, now and as it progresses. I may bounce around between past frustrations and current daily frustrations, but I will try to not make it confusing. I will even try to build in some information on FTD since it is often overlooked because all the attention is put on AD which has a higher number of patients.
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