|The biggest and best changes in my life. OK! Gracie is big!|
A lot has happened in this past year. I have had many changes in my life, and most of them were for the better. As for the progression of my bvFTD: it has continued to be slow, but persistent. I am not as good as I was, but better than expected. That is a win for me!
First for the changes, most of which occurred in the second half of the year. Kroozer, my companion skunk, died suddenly last fall. His furry little presence is felt every day. He was a wonderful and affectionate pet.
Also last fall we rescued an Akita Inu, actually an American Akita depending on where you live. The breeds are separate in most other countries, but the AKC has not yet caught up to the rest of the world. Her name is Gracie (as in Gracie Allen), and she is completely deaf, and a long-coated silky variety. In the last 4 months she has learned sign language, and become a member of the family. Gracie is also in the process of becoming an assistance dog for me, but has difficulty ignoring strangers in public. She wants to say "Hello!" to everyone, and is overly friendly. Gracie is extremely intelligent. Basically she is just a joy to have around. I think I would rather have her flunk her training, and stay friendly.
The reason I mention Gracie is that she has had a profound effect on my bvFTD. Just her presence helps calm, and ground my thoughts. Kroozer certainly had a calming effect on anyone who held him. He was a "cuddler", but Gracie is a challenge. Gracie also helps me sequence and think because she is a very smart dog. Competition is good! When I have her with me, I have to think about controlling her, and her behaviour, and she is always trying to out-think me. She is like having a 4 year-old around, but she is more advanced in some areas, and doesn't have thumbs. This automatically makes me think about and control my own behaviour. The fact that she is a babe-magnet does not help in any way.
I also got engaged, and my girlfriend, Cindy, of 3 years has moved in with me. No! No date has been set. Fiancee sounds better than "girlfriend" at our age. Anyways, I don't know how she puts up with me ...but that is a two-way street. She has done a good job of understanding my bvFTD, and mostly seems to know when to push me into doing things, and when to just let me vegetate. Mostly... In any case, we are a good fit, and from my standpoint it couldn't be any better. We are very happy.
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 3 years and some change. Yes! They have some side effects, but in my opinion the benefits are well worth it for me. My new Neurologist questioned the efficacy of this because Aricept and Namendas are contraindicated for bvFTD, but had to admit I was doing very well after 4 years.
Something is working. I also have taken Pomegranate Juice and Lion's Mane mushroom extract on and off as I could afford it. Now and then I also take vitamin D, Niacin, B-complex, and vitamin C, but not regularly. I eat a pretty varied diet, so I figure the supplements are just there to boost the antioxidants and help clean out the excess crud building up in my brain. If they slow and protect what brain cells are still healthy, or promote the growth of new ones (especially the Lion's Mane Extract) ...yay for me. In any case something that I am doing or taking seems to be working. I wish I could figure out how to work some coconut oil into my diet. I have it, but it is just frikkin disgusting!
Finances have not really changed much over the past 4 years. I am just able to get by, and I am still really poor. It has been really difficult since Christmas. There are more bills than there is money to pay them. Better times are coming - that is a translation of an old Czechoslovakian proverb courtesy of my long departed, but not forgotten., Grandmother.
|Rough winter, but I still get out to the park with Cindy and Gracie.|
Gracie costs an extra $50 a month in dog food, but I no longer have to pay PMI insurance on my mortgage so that is a wash. Thanks to Obama for the assistance with food stamps. They do help. Obamacare has taken its toll, of course. TANSTAAFL! My blood tests, which were covered last year, are no longer covered, neither are most other tests. Neither are my test strips for diabetes, so I am still using the ones that expired in 2011. Test Strips were always covered by my insurance, and were available anywhere. Now they are only available from a few sources, and not covered by insurance except as a "medical supply" same as a wheelchair or something, not a "prescription" - so they can no longer be purchased at the local drugstore. One cannot take millions from medicare and expect things to remain as they were. Some of my prescriptions cost a few pennies less, but Namenda is still expensive. My Social Security payment went up by about $20 a month this year, so that helps. A full-time job in retail for Cindy is now only 20 hours a week instead of 40 thanks to Obamacare, but at least she has a good job. I am not going to expound on the detrimental effects of Obamacare as there are plenty of others willing to do so at great length. Just let it be known that I am not a fan. I have personally seen and felt the direct effects, and there is nothing good about it. I had a good insurance policy before, and now that plan has been reduced to cover what the government mandates. The plan I had that had great coverage is no longer available because the so-called "Cadillac Plans" didn't fit the standard mediocre crap coverage the government demands. But hey! If I get pregnant I am covered, if I don't want to so is my birth control, and so are my mammograms! ...but not a PSA for prostate. Hmmmmmm... don't get me started ...you know how I get
So much for the state of the world.
The biggest bvFTD-related changes I have seen are in the areas of cognition. Executive Syndrome is where I originally had the most severe deficit, and that continues to be the case. Math is hard. Actually, to be more specific, arithmetic is hard. Almost impossible now. I just cannot add or subtract numbers in my head any more. I don't even try.
I seem to have slightly more difficulty with sequencing, but it is not consistent. Some days are better than others. I don't get confused making a pot of coffee, but I cannot recognize patterns and number sequences with any consistency.
My verbal skills are holding their own, but I do pause in mid-sentence much more frequently to search for a word. There are many times when a word or name completely eludes me - but that is what Google is for.
I am having more trouble getting motivated to do things, and if I have any behaviour issues they are probably related to anger. I can get really pissed off really fast with little or no warning. Poor Cindy! I also have more problems with short-term memory which results in time-compression and missing-time. I am OK in the moment, but I may not remember it later. This has not been too much of a problem so far, but I am aware that it is worse than it was 4 years ago.
So, all in all, after 4 years I am doing pretty well. I am holding my own, so far. As predicted by my Neuropsychologists, my progression has been slow. Maybe it is just the flavor of the disease that I have, or maybe it is the medications and supplements that I am taking. I have no idea. Every case of bvFTD is different. Nobody has any answers yet. Maybe someday, but not today.
|Gracie loves to go exploring in the park, or anywhere. She make me take Cindy out and do stuff.|
Some days are better than others, and most days are what you make of them.
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