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Wednesday, February 28, 2018

Spring 2018 Update. Eight Years With bvFTD, and Still Kickin' !

"Life is a great big canvas. Throw all the paint you can at it!" ~Danny Kaye


I make this shirt look good! Go Tribe!
It is that time of year again when I try to write a progress report of sorts on the progression of my bvFTD. It has been 8 years since my diagnosis. The average life expectancy of someone with bvFTD just happens to be about 5 years after diagnosis ...well, actually, as more people are being diagnosed earlier this average has been increasing. I have seen estimates as high as 12 years, and even 20. I like the sounds of 20! With that in mind, I am still doing very well. If that looks familiar, it is because I copied it from 2015 (I copied it about 8 times cuz I'm lazy!) with a few changes. I am having a very difficult time getting myself motivated to write (or to do anything else!), so I cheated. Call it a work around. Besides, most of what I wrote then applies now in 2018, only more so. For some reason last year I didn't want to write anything. Maybe I was too busy doing stuff to write about it.
Of course I am worse-off now than I was 8 years ago. My disease is progressing, but so far it is still progressing slowly. My dysexecutive syndrome and cognitive problems have not progressed very much if at all since 2016, either that or I just don't notice anymore. I always use my ability to do mental arithmetic as a way to measure. I simply cannot do much mental math any more - more precisely I don't bother because it is so difficult. So, if it got worse I might not notice. My arithmetic skills seem to be a little better. Maybe I have adjusted somehow. When I try anything at all complicated, it is still 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, but only if I can fully concentrate, and am not interrupted.
I have sporadic problems with sequencing. I can usually tell when I am having a more challenging day, and try to adjust accordingly. By "adjusting" I mean canceling any ambitious plans, and staying close to home if at all possible. Since I rarely have any ambitious plans this usually does not pose much of a problem. I have been reading a lot. When I say a lot, I mean several books a week. Kindle Unlimited is the best! I have no difficulty reading, and remembering what I am reading. Back 8 years ago I had trouble remembering what was at the start of the page I was reading, and sometimes the start of the paragraph I was reading. I forced myself to keep at it, and it got better. Again, I think I have adjusted.

Little things I enjoy doing
to keep me occupied.
I keep myself as busy as I can with small projects. I have not tackled anything big since remodeling the camper. I still have not installed the stove, but after camping most of last summer we didn't really miss it. We just cooked outside. Speaking of “small” projects ...I did not mention it at the time for various reasons, but last Spring we raised a baby squirrel. That kept me occupied for a few weeks, in the best way. He is now happy, and healthy, and roaming all over the neighborhood. We see him almost every day, but though he always stops when we talk to him, he no longer comes close. I guess that means we did a good job as squirrel-parents!

Late last Fall one of those “small” projects got the best of me. The basement sink that the washer drains into got a clogged drain. Probably lint (or a sock!). When I was unclogging it I managed to sprain my lower back. I mean severely sprained and strained. I was just fine right after I did it, then 2 days later I could hardly move. It hurt to sit. It hurt to stand. It hurt to lay down. I couldn't sleep. My Doctor prescribed all the usual stuff for a lower back sprain, and some pills for the pain. The pills didn't work at all. Eventually I got better, but it took weeks and weeks. I was fine for about a month, and strained it again. I knew it was weak, but that mattress and box spring needed to go down that flight of stairs. It is getting better again, but I keep re-straining it. I haven't lifted anything heavy (Like 20 boxes of books!) in a week! The reason I mention it is that the pain pills, including Ibuprofen and Vicodin really played havoc with my short term memory. I took very little because I could barely function. I think they interacted with my other medications. Whatever it was, wasn't pleasant. The only thing that relieved the pain without side effects was some occasional cannibinoid infused candy. At least that helped me sleep. It also gave me some interesting dreams.

Other than that, the holidays went well. We had a dozen or so people over for Thanksgiving dinner. I did not get overwhelmed, but took a few days off afterwards to recover. I love cooking for a bunch of people. Christmas was not at our house since we hosted for Thanksgiving. That made it easy. I think I am doing better around a bunch of people. I had fun, and was able to cope well. Maybe I have adjusted to dealing with that, too, but it still takes some preparation. Cindy also helps keep the stress low. Though I enjoyed the holidays, I am glad they are over.

Old Mixmaster works better
 than the Kitchenaid!
My son got us an Echo Dot. I liked it so much I got another for the upstairs. We both use them all the time to play music. For Christmas he got us a set of smart light bulbs. I took my time, and got them all set up, synced, and linked to the Echo Dot. This is not exactly easy, and I am happy to say I had little difficulty keeping all the necessary steps in order. At first I thought they would just be a novelty, but they are very convenient in the middle of the night. My sleep patterns are a mess, so I am often awake in the middle of the night. Added a firestick. Now the damn house is smarter than I am! It only feels a little silly to be talking to “Alexa” all the time. Har!

I have mentioned I like to cook. I have wanted to make my own sausage for a long time. I collect old stand mixers, and have several with grinder attachments. The
Dormeyers are my favorites, but I used one of the Sunbeam Mixmasters from the early 1950's to grind up a pork shoulder. I had a little hassle finding a sausage stuffer, and finally bought a manual one for under $10. The nozzels (Snouts?) fit perfectly on the grinder, so I was in business. I stuffed about 12 pounds of sausage. I made spicy and sweet Italian, and Apple and Maple breakfast sausage. I am not overly fond of the breakfast sausage, but love all the rest. I can't wait to make some more. Not only did it come out delicious, it is really fun to make. Several people have had it, and agree it is some of the best sausage they have ever tasted. Following recipes, or more precisely making up my own as I go, does not give me any problems. If I get a step or two out of order it rarely makes any difference. Learning to make sausage was a fun way to keep active.

Making food from scratch, and using some of the vintage kitchen appliances I collect is not only fun, but keeps my mind active. Though sometimes it may take me a while – sometimes a long while – to get started, it is worth it. A few years ago we found a pasta maker with several different cutting dies at a thrift store for $5. I love a bargain! Though kneading the dough always bothers the arthritis in my hands, it is fun to make all sorts of different pasta. It is even better getting to eat it! I really think keeping active, and challenging my mind is a help.

I told Cindy I wanted to take some of my photographs, and make paintings from them. For my Birthday she got me a really fancy easel. I slowly accumulated some quality paints, canvases, and brushes. Cindy signed us up for a basic acrylic painting
"Kissing Fish" from the class. My first acrylic painting.
Cindy's is on the left, mine is right.
class. It was difficult to make myself go (Cindy basically led me by the hand) , but I really enjoyed it once I was there. We had a lot of fun, and our very first paintings are proudly hanging on the wall. I have done things in other mediums, but I have never painted with acrylics before. I really like them. Easy clean up, and fast drying. I am impatient, so that is a big plus.

So, that is what I have been doing the last few months of 2017 after our vacations, and the first part of 2018. We are both fairly active on FaceBook, and I occasionally
Fancy easel Cindy got me.
 My 2nd painting is of LilBit.
post on Twitter also. It is a great way to keep in touch with friends, and family. It also helps me keep track, and stay in the moment. We are still both playing Pokemon Go. What stupid fun! Cindy and I have both been playing ever since about a month after it came out. As of today I have walked a little over 840 Km, reached level 36, and caught over 15000 Pokemon since we started playing! Yes! This game does help get my butt out the door! (More so when it is warmer)

I was going to add the final details,
but decided I liked it like this.
In the Fall of 2016, we rescued a little boxer dog from the pound in Toledo. She is very smart, adaptable, and full of mischief! She was just what I needed. She loves to go camping! Actually she just loves to be with us no matter what we are doing.  It only took a couple days to teach her how to answer yes or no. A short bark for a “yes”, and she “freezes”, and is quiet for a “no”. Unlike my dog years ago, she doesn't bark twice for a “no”. She has a wicked sense of humor, which I guess is typical of Boxers. She is cuddled up next to me on the couch as I am writing this.

I am still driving. In fact, I drove almost 2500 miles, lots of it towing the camper, on vacation last Summer. Camping lets us take long vacations to interesting places, and we all enjoy it. I plan to do it again this coming Summer, too. I am very careful, but so far have not had any issues. I only drive a few hours a day because it tires me out, and I get sore. I still drive an 11 year old 6-speed manual Jeep Wrangler Unlimited (4-door) Rubicon. Years ago my neurologist said I would probably start having difficulty with the manual transmission before I had difficulty driving since with low range it has 12 speeds forward, and 2 reverse, with a couple of neutrals thrown in. So far – so good! Except for an occasional vacation, most of my driving is local on streets I am very familiar with. I have not noticed any changes in my driving, other than being more vigilant, and maybe just not getting out as much.

I wrote the basics of following paragraph 3 ½ years ago, and it is still true, with a few modifications this year. The only thing I could add is that everything mentioned is a little worse. 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. It seems to run in spurts. A few weeks in a row  I can't seem to get myself to do anything, then all of a sudden I am doing stuff easily. There is no pattern I can see. I am also a lot 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 than before. This is still not debilitating, but it is now becoming more noticeable as it is an almost daily occurrence. My emotions are damped. I still have them, but less amplified.
Whatever I do, LilBit is right there
"helping" me. She wears a size 4T.
Thrift store kids clothes. Ha!

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 8 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.), and Actos because my blood sugar was elevated.  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. I drink pomegranate juice when it is on sale. I have posted before about why I take the Lion's Mane, and Pom juice. At certain times of the year I also must take some antihistamines. Lately I have been taking dyphenhydramine, and a generic chlortrimaton. 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. Zyrtec just does not agree with me, so I use it very sparingly. I am still here, and doing well, so something is working. If I had to guess I would say it is the stupid mushroom extract in combination with the Aricept and Namenda.

I have recently stopped taking Meloxicam for arthritis pain in my hands. It seemed to work well for the pain, but I had some acute kidney problems which cleared up as soon as I quit taking it. So far my arthritis pain is manageable with an occasional Tylenol, which is better than it was before. When I had to stop taking Jenuvia because of the severe joint pain, the pain did not go away when I stopped taking the drug. I think I have finally recovered from the side effects of that nasty drug.
I hate taking medications, but something
is working, so I am not changing it up.
Basically it caused arthritis in my finger joints.


I frequently say that “Some days are better than others.” Recently someone asked about what my bad days are like. I rarely write about my bad days. Partly because I don't dwell on them, and partly because I often don't remember much about them. It just so happens that I had a few weeks worth of bad days in a row at the end of last year. On bad days I have no motivation whatsoever. I just want to lay around all day. Everything makes me feel stressed. Just doing the little things like meals, and taking care of the dog, are an accomplishment. I did not want to go anywhere or see anyone. On these bad days I am most comfortable curled up with a good book in a dark room, or watching an old movie. I just want to be a hermit. I left this paragraph in because again I had some difficulties near the end of the year. Between antihistamines for fall allergies, and my back problems I was a mess for a while. But I got better!

Sometimes just an afternoon snooze
on the couch is in order.
Most days are still pretty good, and even the bad days are tolerable. Last year I was working hard on the camper, and really didn't notice many, if any, bad days. Same with the vacations, with a couple notable exceptions, but we delt with it. So far this year I have been keeping myself busy with smaller fun projects. I still want to get the stove intalled in the camper if I can get myself motivated. That will not be fun because the previous owner ripped out all the tubing, and cabinets where it originally went. I also want to add solar power. We like to camp pretty far off the grid.

Some days are better than others, and after 8 years most days are still pretty damn good. After 8 years with bvFTD it is good to have any days at all, and be looking forward to having more..

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