A blank. That is what I seem to come up with when I think to post to my blog. I often have many things I want to say but when I think to write a post it seems like so much of it just disappears. This disease, if you are aware of the changes, is so frustrating it is beyond anything I could possibly explain. It can make me sad, frustrated, mad and everything in between. I try to stay positive and stay in the current day but the current day is getting harder. I often flounder about not getting much accomplished all the while wanting to get things done and not knowing where all the times goes. A highly frustrating experience. I can't manage time to save my life. That is the most frustrating of all. In the past time management was crucial to my success and now days I can't manage it for the smallest things. I will start out the day with the best of intentions but soon the procrastination and confusion over what to do next or what are the priorities set in. It is just something very hard to explain and I imagine very hard to understand if you haven't experienced this disease. My variation of Alzheimer's is often more similar in symptoms at this stage to FTD than other Alzheimer's patients. I am having more memory issues but top of mind awareness is the worst problem. Often it isn't that I forget totally about something, it is that if I am not reminded or thinking of it then it kind of disappears until something or someone reminds me.
I write this blog for anyone interested in learning more but mainly I write it for myself and maybe someday family members that are interested in looking back at my journey through this disease. I keep wanting to write it on a very regular basis but it just slips off the radar too often. Another part of keeping to any routine and managing tasks. I also often have trouble, as I mentioned at the beginning, with remembering what I even want to say, putting things together in any kind of way that makes sense and even resembles the way I used to be able to write things. It is all so frustrating that a lot of days I guess I just don't want the challenge. Maybe it is good for me, I don't know. I do know that this week has been incredibly hard so far. I have had some type of cold virus yet again, it seems that I only can feel good for maybe a couple of weeks if I am lucky before picking up some other thing that would have been incredibly minor in the past but now creates havoc for me. When you have one of these diseases you have so little reserve they tell me that when you have anything else going on like a virus it just floors you. My father used to be that way for a lot of years and I never could understand why even a common cold would knock him for a loop, now I know. It just wouldn't even occur to the "normal" person the things that become challenges for us that are just minor irritations for others. The main thing I have thought a lot about lately is that we are all still the same people inside, it is just that our abilities, memory, and personality don't reflect that. It is important to understand that we still have feelings even though some may have their senses a somewhat dulled it doesn't mean it gives anyone license to treat us with anything but dignity. I guess fear is at the base of what most of us really experience. Fear of what tomorrow will bring. Fear that someone will take advantage of us. Fear that someone will make fun of us because we are slower on the uptake than we used to be, usually way slower. I often feel so stupid and realize how much I took for granted my intelligence and abilities all my life. I mourn that I didn't have the focus to do far greater things with my abilities. I would always settle for what sort of fell in front of me and make the best of it instead of striving for great things. I don't mean I wasn't ever successful in what I did do because I had some great successes but it was never really what I had wanted to do. I just lacked the focus to follow through on the things I really wanted. I don't know how much had to do with my ADD which was never really diagnosed until later life or if it was just a personal flaw. I am a very flawed person in many ways but I have always tried to be a good and honest person. That is how my mother raised me, that is how my mother was and I have always tried my best to live up to that.
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May 2016
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