|Grillin and Chillin! This picture is a couple of years old, but I think it sums|
up the decision making problems associated with bvFTD. Yes! This was posed, but still...
I am worse-off now than I was 6 years ago. My disease is progressing, but so far it is still progressing slowly. I had really hoped that my case would fit the criteria for what is called Phenocopy bvFTD, however I have way too much progression. That is my self-evaluation, but probably a very accurate one.
My dysexecutive syndrome and cognitive problems have progressed slowly but surely over the years. I always use my ability to do mental arithmetic as a way to measure. I simply cannot do mental math any more - more precisely I don't bother because it is so difficult. When I try it is like wrestling with tangled thoughts like wet spaghetti - numbers slip away because I can't hold a number in my working memory long enough to manipulate it. I have come up with a few work arounds for really simple arithmetic, but anything complex is no longer possible. Generally, I think I still think OK, but I think that is due to the medications I take. I still have the ability to evaluate very complex problems, and can process large amounts of data. I just can't add!
|Scraping the ceiling was NOT fun!|
Day-to-day in the moment I am still functioning well most of the time. I try to keep a loose schedule. The routine of the daily stuff is comforting. Cooking, cleaning, laundry, shopping, and all the rest of the housekeeping and personal hygiene stuff is part of the routine. When the dog hair starts to blow around like tumbleweeds I know it is time to vacuum. Maggie does not shed near as much as Gracie did, and her fur is much shorter. Cindy must dust a lot because I don't do it very often, and the dust isn't too thick in most places. I usually don't stink too bad, so I must be doing ok with the showering and bathing. I have not had a hair cut in 5 years, but that is by choice dictated by finances and the fact that Cindy likes my hair long.
|Maggie loves to ride in the Jeep. She just wants to be near us.|
I wrote this following paragraph a year ago, and it is still true. The only thing I could add is that everything mentioned is even worse. This is my area where I notice the most changes, and none for the better. The biggest changes I have noticed are in my motivation, and in my speech. One of my most debilitating symptoms is not being able to make myself do anything. Thinking about doing something is just as good, if not better, than actually doing it. I just cannot get started, and this has definitely gotten worse in the past year. I am also more anti-social, but I think that is related somehow. I fumble around for a word, or cannot remember a name or title much more often that before. This is still not debilitating, but it is now becoming more noticeable as it is an almost daily occurrence.
I am still taking Aricept at 20mg/day, and Namenda at 20 mg/day, and Ritalin at 20 mg/day. I have been taking these 3 drugs for 5 years and some change. Yes! They have some side effects, but in my opinion the benefits are well worth it for me. I have had to add glyburide/metformin 5/500 (2 pills twice a day for a daily dose of 10/2000 - if my arithmetic is right.) I probably forget to take my medications at least one or two days a month, but I do not use any reminders other than keeping them in plain sight in the kitchen. I also take Lion's Mane Extract. I seem to take it about 3-4 months out of each year. I also take losartan for blood pressure, and levothyroxin for thyroid. Occasionally I take a vitamin D and B supplements., and pomegranate juice when it is on sale. At certain times of the year I also must take some antihistamines. Lately I have been taking dyphenhydramine, and sudafed PE. They both have side effects, especially with short term memory, but they seem to be better than some of the others I have tried. The worst one for affecting my memory seems to be Zyrtec, which I try to avoid now that I figured it out. I took a Zyrtec a few days ago and was so drowsy I couldn't function. Zyrtec just does not agree with me.
|Maggie and Cindy make the bad days bearable.|
|Maggie is pure Cane Corso (Italian Mastiff)|
Some days are better than others, and after 6 years most days are still pretty good.
Please take a few seconds to click on an ad. The pennies do eventually add up. Help buy Maggie a scoobie-snack. Thank you in advance.