I am sometimes asked why I have so much insight in to my symptoms and can see many of the effects of my disease when so many can not. I really do not know the answer to that, I have ideas and thoughts but no sound evidence to back them up. I often write about things to do with advocacy because that is my passion now days but I keep thinking I really need to start writing more regularly about my experience with the disease. That is what most people seem to be interested in the most. So I am going to try to remember to write often about thoughts I have about my disease.
First I need to explain again that I have atypical Alzheimer's Disease which is of the frontal variant. That means it attacked areas of the brain that interfered with executive function first. This last year I have noticed symptoms which seem to signal some involvement now with the memory. They aren't things that are huge but scary to me as I used to have what I now think is close to a photographic memory. I absorbed so much with so little effort in my life that I can explain it no other way. I have always suffered from ADD (Attention Deficit component only, no hyperactivity) so I never could realize much of my potential in traditional academic settings. Even when I was motivated, which was extremely hard for me, if it was the traditional lecture, textbook and exam model I struggled horribly and yet in most cases got average grades. Once in a while I would get very high grades especially when the class was non-traditional and sometimes in college I would come close to failing a class. Once I did fail a class and that was so disheartening to me because I knew I was way better than that but I just didn't care enough.
Anyway, as usual, I totally digress. Part of the disease. I start in to tell a story and get sidetracked in to way more explanation and history than necessary. My apologies. So why do I have so much self awareness about what is happening to me? I don't know but suspect it is mainly due to the way the damage has occurred so far. It hasn't seemed to effect my common sense a lot however decisions are very hard for me. There are so many things that seem to be a contradiction to one another that the only thing I can conclude is that the complexity of the brain make this disease seem very strange in the way it is developing with me. I used to be able to spell any word without ever consulting a dictionary long before we wrote anything digitally. I used to proofread my own ads when I sold print advertising and would often catch typos and other mistakes that the proofing department would not. It was a skill I had to develop to not allow my brain to read what I thought should be there since I composed the copy but to actually read what was on the page. Again, this was back before proofing was done in the digital format. It was on a piece of paper. Again I digress, I am trying to illustrate how things were for me at one time. That time has passed however. Life is so different now. I use spell-check on everything I write and I make a LOT of mistakes. My typing used to be very good, now it stinks. These things are so frustrating to me, It is hard to adjust to ever evolving abilities that are less than last week, last month or last year. You can't help but feel like you are continually getting dumber. I never appreciated my brain or what it could do until I started to lose it. I suspect I am not alone in taking things for granted that have always been that way. It is probably human nature for most. Be thankful for your abilities if you are not diagnosed with a brain disease. I would trade this one for any other disease. I really would because I didn't realize how wondrous the brain truly was until mine started to disappear. I think about things to say here when I am not writing and then can't remember exactly what I was thinking, but it was brilliant, LOL! I love humor and will poke fun in a sarcastic way at myself at times, you can't take life too seriously or you will never get out alive! I always loved that joke. So I never mean to write that old pity me kind of thing, I don't feel sorry for myself, I feel sorrow for what I have lost and mourn it but to feel sorry for yourself in the traditional sense is a waste of time and not good for the sole. I do fear the future a great deal but I avoid that fear by taking one day at a time and not thinking too far in to the future. When you have witnessed your father go through all the stages and die from what they believe is the exact same thing I am diagnosed you have to be scared but nothing can be gained by dwelling on it. It is what it is and I can not control it. Some among groups that I belong of diagnosed people contemplate suicide and I do not judge them in their thinking. Perhaps I am a coward to think it isn't an option for me because I have spent my life believing that is never an acceptable thing so it goes against my ethics and beliefs. Still to say the thought hasn't crossed my mind however fleeting would be lying. I do understand that some are in so much terror from their disease with hallucinations, chronic pain and other things that people not diagnosed would struggle to understand. That is why there is so much value to the support groups to which I belong that consist of diagnosed people only. People can feel free to speak their mind without being condemned and know that others truly get where they are coming from with the thinking. Often they write in sort of a cryptic style because the ability is so damaged that is all the can accomplish and that is fine with all of us, we understand. It is awesome for them to feel comfortable getting out whatever they can manage. Well that does it for today I guess, I have many things I hoped to accomplish today and like every day only a tiny percentage will get done. It is so frustrating to want to do things but what used to take me 5 minutes might take an hour now. What I used to do without even thinking about it now requires me to keep focus on what I want to get done long enough to accomplish it. I get sidetracked and the thing I wanted to do is no longer top of mind so I don't remember that is what I started out to do and end up doing other things. I didn't forget that I wanted to do it overall but it did slip out of the consciousness so to speak, it is hard to put in to words because it is such an odd world those of us diagnosed live in that others have trouble understanding it fully. Well, until another day, that is it from "my own little world
My local chapter, Greater Iowa Chapter, of the Alzheimer's Association along with other chapters that have any part of Iowa held their annual advocacy day at our state capitol on Tuesday, February 5, 2013. Everything went very smoothly I thought and it was a good day. The picture at left is me on the far right with Representative Joe Riding (my Representative) in the middle and an advocate also named John from my local chapter whose mother is diagnosed.
We were advocating for a bill this year entitled "Alzheimer's Disease Response Strategy" which is a fairly simple inexpensive bill compared to what it is attempting to make better. It ,in part, calls for the Department of Human Services (state level) to be put in charge of coordinating all services, data and information on Alzheimer's Disease. AD is the 6th leading cause of death in America but is the 5th leading cause in Iowa so it is even more important in my state than it is nationwide which is still of huge importance to every American both from a humanitarian and fiscal standpoint. It is important to have a starting place for people diagnosed and their caregivers to find out what resources are available and reduce duplication while tracking data in a centralized location. Right now someone diagnosed is often given the diagnosis and then left to wonder what now? Many don't even realize the resources and help available from the Alzheimer's Association. Recently quite by chance I met a caregiver that told me of her despair trying to care for her mother in her home without any respite except that which could be done by a daughter. I told her about the Alzheimer's Association Helpline that is 24 hours and has well trained people that can tell her many of the resources available to her. But they can not and should not do some things that is more of a government function so we need a master resource within government to tell them about all resources including the association. The Alzheimer's Association is a non-profit that is solely focused on improving the lives of those diagnosed but is dependent on the generosity of the American people. They do not have a taxpayer budget but yet are the single largest source of private funds for research, one of the things the association thinks (and I agree) is very important to those diagnosed.
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