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Friday, April 22, 2011

Progress - A year Later - Aricept And My bvFTD

It Has Been A Year Since I Was Diagnosed With Frontotemporal Degeneration (Dementia), bvFTD

Can it really dissolve tau clumps?
I have not written anything this month. It isn't because I didn't want to, and it isn't because I didn't have anything to say. For the past several weeks it has been more difficult than usual to get motivated. I have been keeping busy doing other things, but that is no excuse. Motivation, initiating actions, and "doing things" are my major behavioral symptoms. I also tend to be reclusive, and not answer my phone or stay in contact with others. I may go a couple weeks without much contact with other people. If a few close friends did not take the initiative and keep in contact with me, I probably would not talk to, or see, anyone at all. All of these symptoms seem to have changed quickly and be more severe over the past few weeks.


I have a theory. Aricept!

The main reason that Aricept is not approved for use in people with bvFTD is because it can make the behavioral symptoms of FTD worse. Since I am now taking Aricept 23, the highest recommended dosage for someone with advanced Alzheimer's Disease, it is a pretty good bet that it is making my behavioral symptoms more pronounced.

All of the physical side-effects have gone away. I occasionally feel a little dizzy, but that is very likely due to a blood pressure medication I take (Enalapril), and not the Aricept 23. Once in a while I have some minor gastrointestinal distress, but again that is probably from something else.

The purpose of my taking the Aricept is to slow, or arrest, the progression of my FTD
. Hopefully it will, but I have no way to evaluate that in the short term. Only time will tell. My neurologist is hopeful, as is my family doctor.

An unexpected benefit of taking the Aricept is that my Executive Functions have improved tremendously. A year ago I was totally incapable of doing even the simplest mental arithmetic. Today I am able to add, and subtract, and do simple mental calculations. I have no way to objectively test it, but my overall thinking is improved. I feel like I am sharper, and more like my "old self".

I am reading a book! OK, this isn't a big deal. I have (had?) always been a reader. Sometimes a couple of books a week. The last book I tried to read was one I started in November of 2008. I finally gave up on it about a year-and-a-half later! I was so frustrated, I threw it in the trash. I simply was not capable of concentrating, and following the complexities of the story. Of course at the time I had no idea why.

I am currently reading, and enjoying, a novel in a continuing science fiction series I started years ago. I am having no problems concentrating, or following the plot. The only difference I see is that I tend to read for shorter periods at a time than I used to. But ...I am reading a book!

A year ago I was totally dependent on making lists, and reminders, to do everything. I still use lists, and make reminders for things, but I am not nearly as dependent on them as I was last year at this time. That may be partly because I have developed a daily routine, but I think I am remembering things much better.

So, it has been almost a year to the day since my diagnosis of Behavioral Variant Frontotemporal Degeneration (Dementia). In my own subjective evaluation, my behavioral symptoms are marginally worse, and my cognitive functions are markedly improved. With bvFTD everything is a trade-off. The only halfway objective evaluation I have is from the few friends who still take the initiative to keep in contact with me. They all say they have seen a huge difference, and that I seem much more like my "old self". A good friend did observe recently that I seem to be having some noticeable ADHD-like symptoms. She said I tend to skip around more in my conversations - enough so that she noticed a change.

I think that something I am doing is working. Maybe it is the Aricept, and maybe it is the other supplements I am taking. In any case, I am not giving up. I even drink some of that awful pomegranate juice every now and then.

Some days are better than others, but there are more good days than bad days. I think a year ago it was the other way around.

Comments and questions are welcome.

Friday, April 15, 2011

WOW! Over 15,000 visits.

There were visitors from the following countries in the past month. Thanks for reading!

United States, Australia, Canada, United Kingdom, India, France, Germany, New Zealand, Malaysia, Pakistan, Switzerland, Slovenia, Netherlands, Brazil, Italy, Turkey, Greece, Sweden, Latvia, Chile, Russia, Saudi Arabia, South Africa, Spain, Indonesia, Armenia, Ireland, Georgia, Fiji, Belarus, El Salvador, Lebanon, Poland, Denmark, Bulgaria, Taiwan, Colombia, Philippines, Nigeria, Qatar, Japan.

What strikes me is that we are not alone. For a disease which is supposedly so rare, we are all over the world, and we are many. Too many! We are Legion!