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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.