Question 1 — What were your first symptoms?
I began having problems at work — I was the manager of a 2,000 seat performing arts theatre and found that after 8 years I had problems doing familiar tasks, multi-tasking, trouble with working with numbers and dealing with season ticket holders and staff. I first thought it was stress and being tired but I finally went to see a doctor when my symptoms got worse and I found myself somewhere and didn’t know where I was or how I had gotten there.
Question 2 – What kind of tests did you have to determine your diagnosis?
I had about 8 months of testing which including all the usual lab tests, blood work. Then I had a spinal tap and that showed a build up of tau in my brain (which cause the tangles in your brain with this disease) and also a gene that carried the Alzheimer’s disease. I also did intense neuropsychological testing. I was “lucky” from the standpoint that I was diagnosed at an extreme early stage of the disease.
Question 3 – What kind of medicine are you on?
I take Exelon (patch) and Namenda. I have some other medicines I take that are off label that help with some of the symptoms.
Question 4 – How are you still so functional?
I get this question a lot. I know many people that have been diagnosed longer than I have and are more functional than I am. As I said, this was caught early in the disease process and I personally think that makes a difference — although medical personnel may disagree — that is only my take on it. I work at it — try to stay active both physically and mentally. There are many many things I cannot do and I won’t go into them but I struggle just like everyone else. It isn’t easy — but I do the best that I can.
It has taken a lot of effort to put down on paper what I have just written. I used to do this with such ease and now after many hours thinking this through and writing it out several times (with help) I was able to get it this far.
I appreciate everyone’s comments and only hope that if you or someone you know is dealing with this disease that you get help somewhere — there are lots of resources out there. I work closely with the Alzheimer’s Association but there are others as well. Check them out on the web and get some advice — it doesn’t cost anything to do some research and ask a few questions. It has helped me and helped my family.
On a lighter note — we are expecting our first grand child this fall — and I am hoping that I will be able to enjoy the little one for a long time.
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