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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..

Please click on an add-link before you leave. It really does help! LilBit loves her scooby snacks! Thank you.

Please feel free to leave a comment unless you are trying to promote some stupid witch doctor's fake-assed cure for slurpyghonneherperea or some such nonsense! Because of those idiots I have it set so I have to approve comments. I get several spam comments every day. No problem. I get a notice on my phone, and as long as you arent selling something I post it whatever it is with the tap of a button.


Did I remember to ask you to click on an add? Oh yeah...I see that I did. Good! Because that is important. Every little bit helps.

Thursday, September 14, 2017

My bvFTD Update 2017. Finally got around to it. Still doing fine after 7 1/2 years!

Deep silence fell about the little camp, planted there so audaciously in the jaws of the wilderness. The lake gleamed like a sheet of black glass beneath the stars. The cold air pricked. In the draughts of night that poured their silent tide from the depths of the forest, with messages from distant ridges and from lakes just beginning to freeze, there lay already the faint, bleak odors of coming winter.
("The Wendigo")” 
― Algernon BlackwoodMonster Mix
(I chose this quote because come October we will be camping in Michigan's Upper Peninsula overlooking a beautiful frosty lake.)


It is way past that time of year again when I try to write a progress report of sorts on the progression of my bvFTD. It has been over 7 years since my diagnosis. Seven years and 8 months! 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. With that in mind, I am still doing very well. If that looks familiar, it is because I copied it from 2015 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 2017, only more so.

Of course I am worse-off now than I was 7 3/4 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. 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.

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. Well, that changed...

I shouted for joy when I finally got all the lights working!
Cindy and I took on a huge project this past spring (more huger ...er than anticipated!), and my difficulties sequencing did not pose much of a problem. We purchased a 1967 Fan Road Chief camper. We had been looking for a camper we could tow with the Jeep, but the new ones that we liked were out of our price range. Way out! Even the used ones in good shape were too expensive. Cindy's brother and his wife went with us to look at it, and we all decided that though it needed a lot of work it was definitely worth $500. Yup! A $500 piece of junk 50 year old camper! That was in January 2017, the week of my 63rd Birthday. The previous owner had half gutted it, and done some very shoddy repairs. I think his heart was in the right place, but he just didn't have the skills, or funds, to do things right. We basically re-did everything he had started.

New electric brakes.
Not fun!
Our first project was getting it ready to tow legally. This involved new tires, and electric brakes. I did the entire brake job myself. It was difficult (rusted solid!), frustrating (wrong parts the first try), but in the end very rewarding. Next came rewiring all of the towing lights. I had to re-do everything from scratch, but finally got them all working as they should. There was a point where I was ready to just douse it with gas, and toss a match in it, but I finally figured things out. Previous owner had completely flarged the wiring, but once I started over from scratch it went really well ...except for the damn right turn signal! I finally had to run a separate ground wire to get it working right ...or maybe I finally found just the right combination of cuss words.

Once it was tow able, we started on the inside. The previous owner had repaired some water damage, and used some kind of cheap plastic paneling which was all warped and wavy and looked terrible. We got 5 sheets of oak plywood from Lowes, and went to work. Once Cindy got the crap-paneling torn off (Yup! She tore into it one day while I was working on something else), we found that the rotted roof
Inside was a little rough!
rafters needed replacing too. Luckily I had enough scrap wood in the basement to patch up the rotten parts. We replaced most of the ceiling and one wall. I won't say it was easy, but it went better than expected.

The previous owner had torn out the stove, and refrigerator, but left the sink and bathroom intact. Cindy's brother gave us a like-new propane stove with an oven out of an old camper, but we have not installed it yet. The previous owner cut all the propane lines when he ripped out the old stove, so that is another big project. After pricing camper refrigerators, we decided to go another route. Rather than spend $1000, we just got a regular mini-fridge from Wal-Mart. For less than $100 we could replace it over 10 times, and still come out ahead. I added a battery, 2000 watt inverter, and a generator when I was re-doing the wiring. Our plan was to be able to camp off-the-grid comfortably. Eventually we want to get some solar panels, too, but that will have to wait.

Cindy helped wherever she could in the beginning, but really I did most all of the mechanical and electrical
Still working on the inside.
work myself. Once we got to the staining, varnishing, and interior decorating Cindy took over. By then I needed a rest.

Let's go camping!
Eventually it was still ugly, but tow-able, and we had a potty, place to sleep, and electricity, so we went camping! Our maiden voyage was a 12 day camping trip off-the-grid into Manistee National Forest in
Our maiden-voyage! Off-grid in Manistee National Forest.  All the comforts of home. Beautiful!
Northern Michigan at a free campground, followed by 3 days outside of Petosky Michigan in a regular campground to visit friends and family. We managed to get in a hundred miles or so exploring off-road trails in the forest, and had a great time. We explored all along the Lake Michigan coast North of Manistee, and spent some time at the beach. The camper was great! No more tent camping for us!

When we got home, my son came to visit, and helped us get the camper ready to paint. He had planned to help us paint it, but none of our paint sprayers worked, and we ran out of time. It was another week before we did anything. After buying an inexpensive sprayer, I spray-painted it all white. I am the world's worst spray-painter, but it came out OK ...with only a few sags and drips to add character along with 50 years worth of dings and dents. Cindy used a roller, and painted the red. We did some touch-up with a small brush. We think it is beautiful!

We had planned to go camping again in July, but the clutch went out in the Jeep, so we put it off until August. Another 2 weeks off-the-grid in Wayne National Forest in Southeastern Ohio. We must have done a decent job painting the camper because we got several compliments on how great it looked. We exploered all over the area around Hocking Hills and the National Forest, met some very nice people camping, and had a great time. We checked out all of the area campgrounds, and were very happy right where we were in the National Forest.

So, all that took us nearly 6 months, and a lot of work. Our next project is to finish the water system. The previous owner had torn out the water tanks, pump, and everything else except the kitchen sink. I finally have everything I need to replace it. All I need to do is find my motivation to get started on it. That is the hard part with bvFTD and me. Once I get started I seem to do pretty well, but getting started is a project in itself. If I get
We even painted the awning! Wayne National Forest in August. Looks like a whole different camper!
interrupted when I am trying to do something, I may never get back on track without help. My brain works very linearly. One thing at a time. Trying to do two things at once only leads to frustrated failure at both. As long as I stay focused, I do pretty well. I just take my time, and work at my own pace. Cindy does really well encouraging me without pushing too hard.

So, that is what I have been doing the past few months of 2017. Before that? Just passing some time. We really didn't do much the last half of 2016, and if we did I am not telling. The only thing of note is that in August of 2016 my children got us both playing Pokemon Go. What stupid fun! Cindy and I have both been playing ever since. As of today I have walked a little over 798 Km, reached level 34, and caught over 12000 Pokemon since we started playing! Yes! This game does help get my butt out the door!

I loves me some campins!
Last fall, we rescued a little boxer dog from the pound in Toledo. She will probably never be a service dog because she is too energetic, and happy, and playful. She is a handful! She is very smart, adaptable, and full of mischief! She was just what I needed. She loves to go camping!

Cindy has done a wonderful job creating flower beds, and the yard is a showplace. I love all the flowers, and so do the hummingbirds. I have a small vegetable garden. Just some lettuce, tomatoes, and herbs, but I enjoy it and it gives me something to do ...usually. It really didn't do very well this year, and we are debating not having one next year. Other than the herbs, we got just enough tomatoes for a couple sandwiches, and a few batches of salsa. I think it got stunted when a drought hit and we were off camping. We lost a lot of flowers, too.

I am still driving. In fact, I drove almost 2500 miles, lots of it towing the camper, so far this Summer. I am very careful, but so far have not had any issues. I still drive a 6-speed manual Jeep Wrangler Unlimited (4-door) Rubicon. Years ago my neurologist said I would probably start having difficulty with the manual 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

I wrote this following paragraph 2 ½ years ago, and it is still true. 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. 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.
Breakfast of champions!!!

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 7 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. I drink 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 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 added Meloxicam for arthritis pain in my hands. It seems to work well, with the added side effect of alleviating the pain in my Achilles tendon.


Foggy morning. Pretty, but doesn't do it justice!
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.


For the past several years I have had a string of bad days every spring. This is a particularly bad time of year for my allergies, and I have to take antihistamines. I believe this is the cause of my seasonal difficulties. At other times of the year bad days are much less frequent. Most days are still pretty
good, and even the bad days are tolerable. This year I was working hard on the camper, and really didn't notice many, if any, bad days. I wasn't taking Zyrtec, so maybe that helped more than expected.

Some days are better than others, and after 7 1/2 years most days are still pretty damn good.



Please click on an add-link before you leave. It really does help! LilBit loves her scooby snacks! Thank you.

Please feel free to leave a comment unless you are trying to promote some stupid witch doctor's fake-assed cure for slurpyghonneherperea or some such nonsense!






Friday, May 20, 2016

Life with Lee and Maggie and bvFTD - Guest Post By Cindy

I came into this relationship with full knowledge of Lee's illness from the start. He was very open and honest about it, and told me all about it on our first date. I did all the research I could, but really didn't find a lot that wasn't on his blog.
Together on vacation in New Orleans in November, 2015.

I knew when he stepped on my porch the first time that I wanted him in my life. I decided after the “research” that his bvFTD didn't matter. I was willing to take him as he was, and for as long as we had. That was October of 2011 nearly 5 years ago. According to our first talk he should have been gone by now.

There have been changes but not as severe as I had anticipated in the beginning. Most of them seem to be subtle until you look back to the beginning. When I say the beginning it is the beginning of our relationship.

I will not say it is easy, but love really can overcome a lot. REALLY!

I see the same changes Lee has mentioned and more. For instance: Anger management is top on the list. Getting motivated is right up there as well. Sequencing, and what I call “hermit mode” - When he hides out in the bedroom in the dark for hours at a time.

Patience has never been one of my virtues, but it certainly has come a long way in the last 4 years. I have always been a very structured and scheduled person. Well that has gone out the window.
Day to day would seem pretty normal to most people. But then what is normal? Before I go to work in the morning just like anyone else, I kiss him goodbye. I always honk when I pass the house so he knows I have left. His sleep is very irregular.

We may text throughout the day and make tentative plans, they are tentative until they happen. Some days something as simple as going to get milk is a challenge for him.

I am learning how much to push him to do things as simple as wiping off the kitchen counter. He is “always” right. It does not do any good to tell him different. Or prove him wrong. But then he is a man, you know. At this time he is in the “hermit mode” as I write this. I really miss our time curled up watch smarmy movies.

The next issue is when he is absolutely sure he has told me something, and he hasn't - and vice versa. I have considered taping our important conversations, but I am not ready for that yet.

He is one day at time, and I am plan! Plan! Plan! ahead at least a week. I have said all this to say -
Everyday every person is different. You each must make your own plans, and ways of coping with bvFTD.

Love is the key to making the best of the time that you have. Secondly, talking about what is happening, and how you personally will deal with it and the changes taking place. Trust! You must have total trust in each other. You also need some one you can talk to about what is happening. I had 1 session with a counselor who specialized in Alzheimer and it helped a little. He had done some research on bvFTD, but mostly talked to me about care giving and memory issues.

As I said, "Love is the key." We enjoy each other a lot.We laugh often. We work in the yard, and share the household chores like cleaning and cooking. We hug, and snuggle on the couch watching TV. We still hold hands when we go shopping. We try to act "all grown up" when we have to. We will not let this disease take over our lives. We make the best that we can of each day.

Maybe I will go into more detail the next time I write.

Feel free to ask me any questions and I will try my best to answer them ...From a fiances point of view,

Cindy

Monday, May 16, 2016

Six Years Living With bvFTD 2016 Update

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...
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 six years since my diagnosis. Six years! The average life expectancy of someone with bvFTD just happens to be about 5 years after diagnosis. With that in mind, I am doing well. If that looks familiar, it is because I copied my last update from 2015. 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, only more so.

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.

I had an awful time with doctors this past year. So many people have had difficulties with being miss-diagnosed, and I had a doctor say that I was suffering from depression rather than dementia as recently as last summer. The ignorance in the medical profession knows no bounds. Part of the difficulty is that most of the tests for dementia are developed to diagnose Alzheimers rather than bvFTD. Since different parts of the brain are affected with FTD it appears that nothing is wrong because a person with Frontotemporal Degeneration does better on the tests than someone with Alzheimer. Of course the tests do not measure the areas where the difficulties from FTD occur. After all this time it was a very frustrating experience. I was very frustrated. Cindy was very angry. It was like talking to a brick.

One of the most ignorant assumptions I have had to deal with is that neurologists give a test to ascertain a baseline I.Q The test is a list of fairly complicated and unusual words. The problem with this is that the speech centers and vocabulary are heavily impacted by FTD which obviously invalidates this test. I was told that the highest my IQ had ever been was 115, and that there has been no change. I have taken several standardized IQ tests in my lifetime, and have never tested anywhere near as low as 115. The arrogance of the medical profession answered this with, “Those other tests must have been wrong!” Of course they would never admit that the test they just administered may be flawed when testing someone with bvFTD.

Yet another test asks you to name as many animals as you can in a given time. I have the equivalence of a Masters Degree in biology, and am a Certified Naturalist. Because I could name as many animals as a “normal” person, the fact that I was having difficulty thinking of some animals names was discounted. Yep! That doctor actually said that I was fine, and that nothing was wrong because the tests didn't show any significant deviations from normal. I fired the dumb bitch. So! I am currently without a neurologist, though I have a few referrals. I am in no rush. My regular doctor retired, so I just changed again. I should know in a few months if I made a good choice. Well, I used to be really smart. Now. Not so much!

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!
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. We do plan some projects to do around the house now and then. The most recent was redecorating the dining room. Removing the acoustic ceiling tiles which were falling down, and patching the plaster and painting. Overall it was fun and rewarding, though it left me with a sore back. Cindy worked really hard too. My bvFTD really wasn't an issue except when I got frustrated and may have put a small hole in a wall with a hammer. Oops!

Now that the weather is getting warmer I can do some gardening. Cindy and I both enjoy working in the yard. She has done a wonderful job creating flower beds, and everything is just starting to bloom. In a few days we will be up to our armpits in irises. I have a small vegetable garden. Just some lettuce, tomatoes, and herbs, but I enjoy it and it gives me something to do.

If I get interrupted when I am trying to do something, I may never get back on track. My brain works very linearly. One thing at a time. Trying to do two things at once only leads to frustrated failure at both. As long as I stay focused, I do pretty well.

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 am still driving. I am very careful, but so far have not had any issues. I drive a 6-speed manual Jeep Wrangler Unlimited (4-door) Rubicon. Years ago my neurologist said I would probably start having difficulty with the manual 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. When I am having a bad day I do not drive.

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.
Behaviorally I have noticed some changes. My temper is very short sometimes. I get angry, or act angry even when I really don't feel that way. It is difficult to explain, and difficult to control. Sometimes I just need to spend some time alone to let my emotions stabilize. I know this is very difficult for Cindy to cope with when it occurs. It is not an everyday occurrence, and seems to be related to my general stress levels, and frustration. Other times, when someone gives me a legitimate reason to be angry I have normal control. Very unpredictable. This is something I will have to watch closely.


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 have had a few bad days in a row the past couple weeks. I think it is a side effect of my antihistamines. On bad days I have no motivation whatsoever. I just want to lay around on the couch all day. Everything makes me feel stressed. Just doing the little things like meals, and taking care of the dog, are an accomplishment. Going to the store shopping is way too much to ask. Too stressful! I do 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.


For the past several years I have had a string of bad days every spring. This is a particularly bad time of year for my allergies, and I have to take antihistamines. I believe this is the cause of my seasonal difficulties. At other times of the year bad days are much less frequent. Most days are still pretty good, and even the bad days are tolerable.



Maggie is pure Cane Corso (Italian Mastiff)
Maggie is a big help. She keeps me on track, and anchored in the moment. She will never be a service dog in the full capacity as was Gracie, but here at home she takes very good care of me. I cannot even imagine her in a crowded restaurant, or shopping. She usually waits for us in the car instead of coming inside with us, or greets us exuberantly when we get home. Maggie is my constant companion, and is rarely more than a few feet away. Usually she is snuggled right up against me. The reason she can't be a service dog is because, like me, she has some impulse control issues. Her main impulse is to chomp on strangers. She is extremely protective. First and foremost Maggie is a guard dog. Most of the time she is very well behaved, but she has her moments. Again, kind of like me.

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.





Monday, February 15, 2016

Gabapentin in the Treatment of Dementia and Behavioral Disturbance



Dr. Marcotte is director of the psychiatric outpatient clinic Marcotte and Associates in Fayetteville, NC.
Acknowledgments:The author reports no financial, academic, or other support of this work.  


Abstract

Are there safe treatments for elderly patients with dementia and aggression? This article describes the use of gabapentin, a nonmetabolized antiepileptic drug, for control of aggression in the elderly patient with dementia. The drug’s relative safety and ease of use are demonstrated to assist in the control of aggressive behavior. The objective of the study was to determine the effectiveness of gabapentin in the acute management of behavioral disturbance in patients who had failed to respond to previous medications and had failed their nursing home placement.

Introduction

With the aging of our population, psychiatrists will increasingly be called upon to provide services to nursing homes, general hospitals, and families of loved ones with dementia and aggression. Although traditional and atypical antipsychotics are commonly employed in the management of aggression, antiepileptic drugs are being used with growing frequency.
Dementia is a major health concern today. It is expected that in the next 50 years, the worldwide population of people >80 years of age will increase by 6-fold, to 370 million.1With the aging of our population and enhanced life expectancy, the large number of baby boomers will shortly reach the ages at which dementia tends to occur, presenting a greater challenge to medical resources and the economic welfare of families.2,3 Those of us who have worked with families that maintain an elderly demented patient in their home are witness to the emotional stress and financial burden that caretaking involves. Factors that affect the family’s ability to care for an elderly relative in the home include incontinence, aggressive behaviors toward others, behaviors resulting in self-injury (eg, falling), or wandering from the premises.
Many nursing homes are equipped with devices that monitor a patient’s whereabouts (eg, anklet or door alarms). However, while nursing home staff may be familiar with patients who wander or are incontinent, they may not be equipped to handle aggressive behaviors that threaten staff members or other residents of the nursing home. Aggressive behavior, considered an immediate crisis within the patient’s home or the nursing home, frequently leads to psychiatric hospitalization. To maintain the possibility of having the patient return to the nursing home, families are often taxed with additional costs, such as paying for the vacant nursing home bed during the patient’s hospitalization in a psychiatric unit.
Patients with dementia hospitalized for other medical procedures in a general hospital have longer lengths of stay.4 Lyketsos and colleagues4 studied 823 patients in a general hospital and found that the average length of stay for patients with dementia exceeded that for patients without dementia by 4 days. There were higher costs of hospitalization and greater complications. Unfortunately, that study did not differentiate delirium from dementia. A substantial portion of those patients who exhibited demented behavior may have qualified for the diagnosis of delirium.5 Patients with a diagnosis of dementia who were admitted to a general hospital were found not to have higher rates of mortality in the hospital. Another study by Lyketsos and colleagues6 noted that of patients with dementia, 27% had apathy, 24% had depressive disorders, and 24% had aggression and agitation. Although apathy and depression were noted to have significant effects on the individual and earlier nursing home referral, a worse prognosis accompanied those patients who had aggression and agitation. Such symptoms also increased the cost of caregiver burden.7
Not only does aggressive and behavioral disturbance such as agitation lead to early nursing home placement, it can lead to expulsion from the nursing home. Behaviors that include aggression toward others result in more costly expenditure, greater morbidity, higher mortality, and increased financial burden.4,6 In addition, the symptoms of agitation and aggression become more significant and frequent as dementia becomes more advanced. Lyketsos and colleagues6 studied patients with symptoms of aggression and agitation and found that 13% had mild dementia, 24% had moderate dementia, and 39% had severe dementia.
The large expected increase in patients with dementia and aggression will produce significant burden for psychiatric hospitals and nursing homes.  Psychiatric care and management of aggressive symptoms must be obtained before the patient can return to the nursing home, even after the hostile behaviors have been ameliorated. Thus, length of hospital stay for general medical purposes is expected to increase.
This article examines the use of gabapentin in a traditional inpatient setting, including patients ≥65 years of age who were both demented and aggressive. Gabapentin, a relatively nontoxic, nonmetabolized, nonplasma-bound antiepileptic drug, was used in addition to a minimal amount of atypical antipsychotics. The results indicate that gabapentin offers a safe alternative to metabolized, plasma-bound antiepileptic agents.

Treatment

Recent treatment of behavioral disturbance with aggression in the elderly has included anticonvulsants, traditional antipsychotics, and novel antipsychotics. The use of anticonvulsants has a substantial advantage over antipsychotics; anticonvulsants are less anticholinergic, thus they are less likely to contribute to increasing dementia.8-16Anticholinesterase medications have been used to decrease the enzyme acetylcholinesterase to preserve acetylcholine (ACH) and increase mental acuity. Anticonvulsants have less impact on ACH and may be less harmful to memory, attention, and concentration in demented patients. There have been more reports of the use of gabapentin in the treatment of behavioral disturbance in the elderly.17-22 Gabapentin has a unique advantage because it does not plasma bind, displace other medications, or cause drug-medication interactions. Gabapentin is not metabolized in the body and 95% of the drug is excreted in the urine. This obviates problems associated with liver toxicity or other metabolic concerns in the cytochrome P450 system. Because it is excreted in the urine, excessive quantities of gabapentin can be accumulated in those patients with renal failure. Gabapentin doses must be reduced in such patients.

Method

Patients treated with gabapentin over 3 years (N=210) through a small community hospital service were retrospectively reviewed. Gabapentin blood levels were obtained from a small number of patients during the course of this study (BJ Wilder, MD, oral communication, 1996). All patients who underwent treatment with gabapentin were selected from this pool. Only patients ≥65 years of age were identified and those with dementia and behavioral disturbance were included in the study. Of the patients >65 years of age, 48 were identified and 13 were excluded. Although the 13 patients excluded from the study did indeed meet criteria for a diagnosis of dementia, they did not display sufficiently aggressive or disturbing behaviors to result in expulsion from a nursing home. Several of the patients had frequently experienced paranoid ideations, suspiciousness/distrust of others, and cognitive psychotic disturbance, but were not overtly physical or disruptive in their behavior. However, 35 patients were identified as having significant behavioral problems resulting in their expulsion from nursing homes. All patients in the study were treated with gabapentin throughout the course of hospitalization. During the course of treatment, ancillary medications were used (Table). Eleven patients had small-to-moderate dosages of risperidone, up to a maximum of 6 mg/day, added to their course of treatment. Most had much more modest dosages. Many of the medications patients were taking before hospitalization were withdrawn for the study.
 
Patient charts were reviewed by an independent research assistant who recorded frequency of the following behaviors: yelling, moaning, screaming, crying, and verbal or physical threats of aggression. Sexually inappropriate behaviors (grabbing, fondling, or sexually provocative comments) were also recorded.
Length of hospital stay was divided into the first and second halves of hospitalization. Each patient served as his or her own control. Charts were reviewed on each patient, and the number of aggressive events that occurred during each patient’s first and second half of hospitalization was recorded (Table).

Results

The average age of all 35 patients was 78 years, and the average length of stay in the hospital was 14.37 days. The number of aggressive events occurring in the first half of the hospitalization was 102; in the second half there were 34. Three patients accounted for 61.8% of the aggressive behavior in the second half of the hospitalization.
The data were analyzed by pairing each observation in the second half of hospitalization with an observation in the first half. The mean difference in aggressive events between the first and second samples was 1.94, with a standard error of 0.518. The probability of observing such a difference in aggressive behaviors by chance alone between the first and second observation period is less than .001. The value of the t statistic for this test was 3.747, thus we can say with 99.9% confidence that the behavioral change exhibited between the first and second half of the hospital stay was not a result of chance.
Although 17 patients accounted for 100% of the disturbing behaviors in the first half of the hospitalization, 11 patients accounted for all of the aggressive behaviors in the second half of hospitalization. Both frequency and intensity of aggressive acts diminished during the course of hospitalization for 16 patients. Only one patient had more events in the second portion of the hospitalization than in the first. Although 17 patients (48%) had aggressive behaviors that continued during hospitalization, 18 patients who had aggressive behaviors before hospitalization had no aggressive behaviors during either their first or second half of the hospitalization. This result is possibly associated with a good response to medication management or the result of hospitalization itself. All of the patients were managed with gabapentin throughout the entire course of hospitalization. Risperidone was the most common medication given as an add-on throughout hospitalization, although one patient received haloperidol. The addition of risperidone was employed in the 11 patients exhibiting aggressive behaviors. Other antipsychotics, antidepressants, and benzodiazepines were avoided. The use of risperidone does not account for the positive results in this study because only 11 of the 35 patients took risperidone during the study. Six of the 11 patients had no aggression in both halves of the hospitalization, whereas 5 exhibited aggressive behaviors in the first half and 4 continued to be aggressive in the second half. The total number of aggressive episodes for the risperidone- and gabapentin-treated group was 30 in the first half and 11 in the second. These figures represent a 36% reduction in aggressive behaviors, whereas in the gabapentin-treated group there was a 30% reduction (102 aggressive events occurred in the first half of hospitalization and 34 in the second).

Discussion

It is highly likely that the removal of a patient from his or her environment and the placement of that patient in a hospital with staff who are highly trained to manage aggressive behaviors does have a salutary effect on the diminishing aggression in a patient with dementia. This may contribute to the fact that 18 of the patients had no disturbing behaviors in the first half of their hospitalization. It is also possible, however, that medication management at the inception of treatment in the first hospital stay could account for some of the diminishment in aggression.
This was a retrospective, open-label study of gabapentin. As such, it is limited to noncontrolled conditions. Although the data were retrospectively examined, results must be replicated in a controlled, blind experiment.

Conclusion

The use of gabapentin in demented patients with aggressive behaviors has been shown to be effective in the management and control of aggressive, hostile symptoms. Gabapentin had no substantial side effects other than mild sedation in one patient,4 who tolerated only 300 mg/day secondary to renal insufficiency with elevated serum urea nitrogen levels and increased creatinine clearance, both of which were in the abnormal range. One other patient could tolerate only 600 mg due to sedation. Both patients were noted to have sedation on higher doses. No adverse events (eg, falling) were noted in the treatment cohort. Aggressive behaviors have a substantial impact on caregivers, and can lead to expulsion from nursing homes and mandatory psychiatric hospitalization. Gabapentin represents a safe medication for elderly patients with dementia and aggressive behaviors. This study employed an average gabapentin dosage of 1,400 mg/day in an elderly population (mean age=78.8 years), demonstrating the drug’s effectiveness in high dosages without any deleterious side effects other than mild sedation. The use of antipsychotics, such as risperidone, did not substantially improve aggressive behaviors more than gabapentin.  PP

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Use of gabapentin in the treatment of behavioural and psychological symptoms of dementia: a review of the evidence.

Abstract

Behavioural and psychological symptoms of dementia (BPSD) have been defined as a heterogeneous range of psychological reactions, psychiatric symptoms and behaviours that may be unsafe, disruptive and impair the care of a patient in a given environment. To date, there are no US FDA-approved drugs or clear standards of pharmacological care for the treatment of BPSD. The novel antiepileptic agent gabapentin is being increasingly considered for use in the geriatric population because of its relatively favourable safety profile compared with other classes of psychiatric medications. Gabapentin has been administered to several geriatric patients with bipolar disorder and patients with dementia. It has also been reported to be successful in the treatment of a 13-year-old boy with behavioural dyscontrol, a finding that suggested a possible role for gabapentin in the treatment of other behavioural disorders. The purpose of this review was to find evidence for the use of gabapentin in the treatment of BPSD. To this end, a search was performed for case reports, case series, controlled trials and reviews of gabapentin in the treatment of this condition. The key words 'dementia', 'Alzheimer's disease' and 'gabapentin' were used. Searches were performed in PubMed, PsycINFO, Ovid MEDLINE, Cochrane Library and ClinicalTrials.gov. The search revealed that there are limited data on the efficacy of gabapentin for BPSD in the form of 11 case reports, 3 case series and 1 retrospective chart review; no controlled studies appear to have been published to date on this topic. In most of the reviewed cases, gabapentin was reported to be a well tolerated and effective treatment for BPSD. However, two case reports in which gabapentin was used in the context of agitation in dementia with Lewy bodies questioned the appropriateness of gabapentin for all types of dementia-related agitation. The dearth of available data limits support for the off-label use of gabapentin for the treatment of BPSD. Furthermore, controlled studies should be conducted before gabapentin can be clinically indicated for the successful treatment of BPSD.