Sunday, March 26, 2017

FTD = Frustrating Terminal Disease

I do not understand my brain at all.  This past week, I learned how to video chat and participated in two successful Zoom video chats. Now I might even join my support group's weekly chats. Of course I will have to get up early, do my hair and makeup and put on something pretty... nothing vain about me!

I would be really happy about learning something new, except that this past week I also started struggling with the TV remote control and some things on the computer. My brain retains useless knowledge, yet it can't retain how to use the remote? But then again, by next week I may not be able to remember how to do the Zoom chats either. Have I said lately how much I hate this disease?

I can stand at the stove and create a really delicious meal, but I can't figure out how to set the timer on the microwave to  know when the meal is ready to come out of the oven. I think I have explained before that since FTD, I have been able to create really great meals, but I do it by taste. I cannot follow recipes much at all.

 Now, I wonder if my brain compensated somehow or made a new pathway so that I could create the food by taste. Was it that, or is it just that since I am no longer able to work and am home most of the time, that I do it well now simply because I have the time? It does get a little frustrating when I am thinking of what to cook and I think "Oooh, that chicken I made last week was awesome, maybe I could make  that again. Oops, I wonder what I put in it or what it tasted like?"

I guess I shouldn't be too hard on myself for not figuring it out. If anyone could, we might have a cure or treatment by now.

Another thing that has boggled my mind for quite a while is why do they continue to prescribe the drugs that delay the progression of Alzheimer's Disease for those with FTD when they know that they do not work for FTD? Where I live is not exactly a hub of medical research, far from it, but we do have some good physicians. It upset me tremendously when my husband told me that, a few months ago at a local caregivers' conference, the preeminent  psychiatrist in this area spoke to them. He actually stood there and said "We know the Alzheimer's drugs don't work for FTD, but we use them anyway."

I know I mentioned that in a blog back when it occurred, but there is a reason I am repeating the story. Today, I was chatting online with someone who is a care partner with someone with FTD. The person with FTD was prescribed the Alzheimer's medications and they really hated the side effects and did not feel they were doing any good. They did some research, found out they were contra-indicated for FTD and demanded that they be discontinued. After stopping, there was no progression of symptoms and they were saving a whole lot of money.

I know for myself, when I was still on the Alzheimer's drugs, I would go into the Medicare "donut hole" in just three months each year, meaning we paid out-of-pocket for all my meds the remainder of the year. Fortunately, there are now generics so that, while they are still expensive, it is a little better. I was wondering out loud (or rather typing out loud if that is possible) why they insist on continuing to prescribe the drugs. The woman I was conversing with said something like "Because the doctors are pressured so much by the pharmaceutical companies." Now that was an interesting thought and a quite upsetting one if there is any truth to it.

If I had to guess, I would lean toward thinking that yes, it could be true in many cases. I hope, though, that the rest of the cases are because, first of all, so many doctors have no clue about anything related to FTD. They think "dementia" and think if the drugs work for one disease that causes dementia, it must work for all of them.  The other scenario I thought of was that the strong desire they have to help their patients might just lead them to trying the drugs because there are no alternatives and they are truly hoping that the drugs just might work.

Bottom line is that life with FTD is frustrating. We never know when we will lose the ability to do something we always did without thinking. That includes everything from the remote control to the ability to walk properly. A thought just occurred to me:  FTD = Frustrating Terminal Disease. That says it all.

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