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Tuesday, September 23, 2014

Bad Days With bvFTD. Lost Another Month. What Happened?

Gracie dressed up for a Party last Fall.

"The only thing I'm allergic to is criticism."
-David Lee Roth

This is a rather long post, but hopefully I can help gain some insight into dealing with bvFTD by rambling on a bit, and exploring some interesting symptoms. I have had a challenging time since my last post. I had stopped taking all of my medications for 14 days to detoxify my system, and get a sense of how I was functioning without medication. As I wrote previously, that went well after the first few days. As planned, I started taking my medications again. I did not have any difficulties with side effects when I started taking the pills again except for some gastric disturbance probably due to the Metformin/Glyburide mix (generic Glucovance) to control my blood sugar. I was feeling pretty good, and most of my days were good days. I was fat, dumb, and happy!

Then all of a sudden with no warning I had a really bad day. I was a little confused, and had a lot of difficulty thinking of words and names. Over the next few days I could feel my anxiety growing and strangling me like a vine. I felt my stress growing. Instead of getting better, each day seemed a little worse than the day before.

To reduce my stress level I limited my contacts with outside people. Just having to "act normal" in a social situation, even with friends, added too much more stress and anxiety. I did not want to see anyone. I did not want to talk to anyone on the telephone. I did not even want to read emails or texts. Saying "I did not want..." is not a very accurate description. More accurately, I was incapable of seeing anyone, talking with anyone, or even texting. It just kept getting worse every day. It was getting scary. I spent many days in a darkened room reading. I don't remember how many, but it was too many.

Just when I was starting to feel a little more normal, I had a friend who should have known better drop by unannounced. Most folks know that I do better if they call first to make sure a visit is welcome. I never did well with drop-ins, and now they are intolerable. Anyway, I visited with him for a couple of hours, but when he finally left I had to lock the doors after him. I did not want even a remote chance of any more unexpected company. I went upstairs and closed myself into a locked darkened bedroom. Gracie was "on guard" snoring loudly right outside the bedroom door to make doubly sure I was not disturbed. I read for a while, and fell asleep. I felt better after a short nap. Well now, the nap isn't all that unusual since my medications can make me sleepy sometimes, but this felt different. I was stressed to the breaking point, and just being a hermit for a while was the only way I knew of to cope.

I should clarify that I do not have anything going on in my life that is any more or less stressful than usual. The every day dealings with Frontotemporal Degeneration, bvFTD in my case, is a constant stress I have been managing over the past few years (more like 4 years, 7 months and 10 days ...but who counts?) since my first diagnosis. Some days are better than others, and I have come to accept that most of the time. I am still not making quite enough money, and still having all of the other daily little problems like always. There were a couple incidents which added more stress than I could handle, but I dealt with them the best I could. I removed the stress.

First, I was buying a television from someone who was moving. Payment was to be made when they actually moved, and needed the money most which was a few months away. Unfortunately, every time I saw them I was asked for early payment, or reminded about the TV until it got to the point where every time I looked at it there was a conflict. I looked at that TV a LOT! It became an unbearable burden. I managed the stress it was causing by removing it. I gave the television back, and cancelled the deal. As soon as it was gone I felt as if a huge weight had lifted. Even I hadn't realized how much stress it had been causing. Of course Cindy thought I was totally crazy, and I am sure she made some excuse about it just being a symptom of my disease, and rightly so.

Then there were the books. Someone brought me a case of 20 books to try to sell, and split the profit. I stupidly agreed because I have FTD and I sometimes I make stupid decisions. After fretting about it for several weeks, I finally had a day where I was feeling better, and I contacted a friend who frequently bought such items. It is so difficult for me to do stuff like that. It sometimes takes me days to work up to actually doing something instead of thinking about doing it. This took me weeks!

I was really looking for some assistance since I was in no condition to be negotiating prices for collectible books with strangers when I was incapable of even talking to a friend on the phone. I still couldn't do it. When I was asked to come up with a price for the books I fretted for several days before finally just saying I wanted them to make me an offer. I was totally incapable of making any kind of decision about a price after it had taken me weeks just to finally make the contact. I really needed help. Though the books are selling online from other dealers for $75-80 each, I would have taken a buck each just to remove the stress. Any extra money is helpful. Money is so tight that even $20 would make a noticeable difference. The person I contacted wouldn't even bother to make me an offer. Their answer, and I quote, was "Shit happens!" Well, I should have known better than to ask anyone for help. I managed the stress. I put the box of books out for the trash on Monday morning. Once again I felt like a huge weight was lifted as soon as they were gone.

What I am babbling about here are a couple examples to point out that neither the books nor the TV is enough to cause any insurmountable stress under normal circumstances. In the past I would have cussed out the tv-person for being such a dick, and set a price so high the shit-happens-bastard would have cried when he paid, or I would have found another buyer. However, at the time, for me, added to the way I was feeling, it was entirely too much. Besides, I am way nicer than I used to be ...mostly.  Well, maybe they were each having a worse day that I was at the time. Both are wonderful friends. See how complicated bvFTD can be?

Each incident caused me to pull back further and further away from the world. All I wanted was to be a hermit, and be left alone. I knew instinctively that is what I needed. Poor Cindy! I don't think anyone can totally understand, but she helped me the best she could. Now and then I received a reassuring or encouraging text from a friend which though I couldn't answer, I read and appreciated. Gracie was always there too, checking to make sure I was OK (Gracie is an Akita, and very protective), so even though I limited my contact with the outside world to manage the stress I was never really alone.

On a side note: I did learn that Cindy is extremely protective of me. She is like a momma bear when her cub is threatened. When I was feeling really bad, and needed a lot of lone-time and personal space she protected me from the outside world. She gave me the space I needed, and made damn sure others did also. Though I do not think I need protecting all that much because after all, with FTD I can still go from zero to rage in 0.24 seconds anytime and anywhere, she did good. Maybe she was actually protecting the other poor fools from me instead. I was a bear cub on the edge!

This had been going on for over 4 weeks!

This is still going on, but getting better. I am switching tenses all over the place as I write this because some of what happened is from weeks ago, and some is current. In my mind time is compressed, so then is the same as now. It feels like everything is yesterday. My past and present tenses have mingled and reflect my state of mind. I think I will not correct them with an edit as it shows how my mind is working, or not working. I am not so much confused, but time is all mashed together.

The whole point of writing this is because I realized something had drastically changed. Cindy realized something had drastically changed. I really don't think it is just the natural progression of my disease because it happened so quickly. The pattern of my bvFTD has been a slow and steady march rather than periods of rapid decline. What I was dealing with was a very rapid decline in my ability to function. I couldn't do anything. I was confused. I had very little memory of what happened yesterday, or the past week, or weeks. If I really thought about it I could remember, but it was as if the time was missing or compressed. Sometimes I could barely talk because I couldn't think of the words. All I wanted to do was lock the doors, and be a hermit.

Together Cindy and I tried to think of anything environmental that may have changed. It only made sense that if it was not directly related to the progression of my disease there must be some other cause. We eliminated just plain stress because that hadn't changed any. I had taken a different dose of Aricept for a week because I used up an old sample pack of 23mg pills before getting a refill of my usual quick-acting 10mg pills. Nothing changed when I switched back, so we decided that probably wasn't it. I had recently refilled most of my prescriptions, and I thought that maybe one or more of the generic substitutions was not what it was supposed to be. This seemed most likely until I got another bunch of refills, and still nothing changed. What could it be? Fumes from the new insulation? We were wracking our brains trying to figure it out.

One night I was sitting on the couch about 3 AM. I had been asleep, and gotten up. I rarely sleep all night anymore. Thinking about what was going on, I wondered if it had happened to me before. Duh! All of a sudden I remembered. April 2012! My missing month. II just re-read my post from back then, and it is exactly the same now as it was then. In April of 2012 I had forted-up and become a hermit, and barely remembered any of it afterwards. Back then I was living alone, so almost nobody noticed. Could something so devastating really be so simple?

It had been a warm spring back in 2012, and my allergies were much worse than usual. I was taking antihistamines. I have not been bothered much by allergies in fall for many years. This year has been different. It has been an unusually cold summer here in Ohio following a harsh winter. For some reason the allergy season started weeks earlier than usual, and pollen counts have been through the roof. Couple that with very little rain, and I guess conditions are perfect. I have all of the symptoms of classic hayfever: Itchy eyes and throat, sneezing, runny nose, sinus congestion, and even a little asthma thrown in now and then just to make it interesting. I have lived with allergies all of my life, so though they hadn't bothered me much in the fall lately it was nothing out of the ordinary. I did what I have always done - took some antihistamines, and went on with what I had to do without giving it a second thought.

Well. Things have changed since I was younger and dealing with allergy season. I now have bvFTD, and take some very robust medications. Even small changes have big impacts. When talking about this with my neurologist back in 2012, we came to the conclusion that the additional stress of allergies coupled with the action of the antihistamines on my already challenged brain chemistry was causing my difficulties. It was just a theory back then, but it made sense. There is convincing evidence that the histamine pathway is intermingled with both cognition and memory.

It is just a theory now, but it still makes sense. We finally got a few days of rain, and pollen counts are more normal. I changed antihistamines, too. Same generic Zyrtec, but from a different manufacturer. I am starting to feel better. Well enough to sit down and write something. I was unable to do that for weeks. Maybe it is just coincidence, but then again, maybe not.

I am looking forward to the first frost!

Some days are better than others, and lately most days have been very difficult. Better times are coming!

Comments and questions are always welcome.