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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.

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  1. Hello. My mother had bvFTD caused by the C9orf72 gene. I'm checking your website every now and then. You're in my prayers. I should probably get tested, but I was diagnosed with Multiple Sclerosis and go for brain MRI's every year and they've told me I have no sign of dementia so far. (I'm 36.) It causes me a lot of brain fog and depression so you can see why I'm worried. Bless you and thank you so much for sharing your experience. Tiffany

  2. Hello, I would like to connect. I have FTD Parkinsonism variant-- Corticobasal Syndrome. It also affects my behavior. I have a blog and I too have been dealing with this for a while-- since 2006. I have an education similar to yours (graduate degrees in Education) and I noted your articulate abilities. I think we could relate on a few points and I could learn from you? I don't know anyone else who has FTD. Can we write each other? Thank you, Dan wewillgoon.com

    1. Hi
      My husband at 57 is in the bvftd diagnostic process but it is clear that is the issue with the mri showing significant neurodegeneration and behavioural issues. I like you habe degrees in education...two masters one in elearning. Would be good to see your blog and perhaps connect with your carer also to offer each other support. Cheers Sue

  3. Hello. My husband has a probable diagnosis of FTD. He had a SPECT Scan that showed abnormalities. I found your blog because it is one of the few that talk about being functional for so long. That’s encouraging to us. This is such a difficult diagnosis but your story is inspiring. May you continue to live life as fully and joyfully as possible.

    1. Hi My husband at 57 is also in the diagnostic phase with a probable diagnosis of bvftd ahead. Would be great to connect if you would like to. Cheers Sue

  4. Hi Lee and Cindy. I have been following you on and off for two years. My wife has bvFTD we are in our fourth year of trying to find a way to live again. She has been my only love since we met May 29th 1971. I am so depressed all the time everyone has left us our two kids wont even call their mom or ever come to see her. I am all alone in takeing care of her there is not one other person in our life. Her sister is the only person that ever calls but she will not allow her to visit her home only talk on the phone. I am very happy to see that you can find times to be happy and do things. We always did the things you guys seem to enjoy, camping, fishing traveling. Reading your last post made me take notice that you drive 12 miles from our house on your trips to Michigan, we live near West Branch, I would like to make contact with you guys if possible but I am just now learning the pc I just created my first account today and I am lost as to how to set things up. i am not sure if this post will show or not but today is my birthday so maybe I will get lucky. so far luck is not with me not one person that used to be in my life has called to say happy birthday only my Ronda cares and she does not remember.... My preyars are with you for as much happiness as God can give both of you...... Tom / Rondalee

    1. Dear Tom
      I am so sorry to hear your sadness. I would gladly talk with you anytime and give any help I can. As you know every day is different. The most important thing to do is to take care of yourself. You can not help Rhonda if you are not well. Savor the good times. Thoughts and prayers.

    2. Hi Tom my husband at 57 is in the diagnostic phase of bvftd but it is almost a certanty as mentioned in other posts above. Would be happy to connect if you would like. Cheers Sue

  5. Hi Lee,

    Did you notice the following as part of your condition?
    I have depression, on velufaxine. My wake and sleep pattern is all over the place. For example, I'm constantly awake all day, at the same level, never a dip, or spike. At 11pm tonight I will the same level of being awake, as if it were 11am. At night I struggle to get to sleep, wake up after an hour and a half, and then finally wake at 7am. I never feel refreshed after a nights sleep, but not exhausted, just a neutral awake feeling, and energy level. My dad had fronto temporal lobe dementia, so I am a little concerned. Have you seen this before? I worked day and night shift for 24 years and was aware of when I would be most awake and the most tired. This is a whole new experience for me. Thank you, Chris.

  6. I appreciate your blog posts so much! I am helping a parent with dementia and am encouraged and enlightened by your research and experience. Thank you and may God bless your health!

  7. You have given the best overview of bvFTD that I've seen. I to have it. TBI, PTSD and FTD. I had some financial and legal nightmares but I'm functioning to a degree.

  8. I am 47. Dad had Pick's and the terror I have is that I too may have it. A non related MRI picked up very minor frontal lobe shrinkage...nothing too far off normal but would present the same as a pre Pick's diagnosis. I am finding it impossible to think it is anything other than Pick's and it is destroying my forward plans as frankly, the second I know it is, I will plan my exit off this earth. I live alone so by what yardstick do I use that I am affected? I do plan a follow up MRI in a few months to see if further deterioration. Thank you for helping me think I may have a few years yet.

    1. Sorry to hear about your anxiety. I was very upset when I was first diagnosed. Not much is known about this disease, and what is published is way out of date. Most doctors know next to nothing. Don't panic. It is not the end of the world. Live life now, and dwell less on the uncertain future. Some days are better than others. Best wishes for you.