Friday, August 26, 2016

Two months

has been a long time to post.  I have gotten a lot of comments and emails lately about my journey with this disease so I will try to go back a little to give some perspective to it and answer some of the questions people have asked.

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.

1 comment:

P Montana said...

Thank you for doing this. I too have early stage, early onset. I am doing all I can to raise awareness about AD to reduce the stigma. My goal is to help other women who may have the disease but are dismissing their symptoms. We tend to be the caregivers and sometimes forget to take care of ourselves. Congratulations on your first grandchild. I have four and they are my loves!! God bless you. Keep writing🙂