"Thank you so much for inviting me to speak at your Alzheimer's Association support group this evening. I really appreciate this opportunity..."
I mentioned a few of weeks ago that I was going to do this talk. Thanks to all those who gave me comments and e-mail on this. This feedback helped me in my preparation.
I did a similar talk about 3-4 years ago at the hospital. There must have been 70-80 people there. When I showed up to the support group meeting, there were seven people. My reflex, at first, in a totally selfish thought was, "Only 7 people? I prepared a talk for only 7 people?"
After a few seconds of reflection, I knew I was being ridiculous and very selfish. I also knew that if there was only one person there, that one person took the time out of her/his schedule to hear a doctor talk about this mysterious disease.
What usually happens is that the question and answer session is better than anything that I prepare. So, I condensed a 60 minute presentation into about 20 minutes. "Are there any questions?" -- And, boy there were! A few of them were right along the lines of Moof's questions from earlier this month: How soon do you really want to know, Suicide: Acceptable in Alz, and If You Could Choose. Cathy has also posted about Alz before - namely devoting her blogfest to Alz Assoc, and this post called Skin Test.
Each person there shared her/his story about Alzheimer's. I couldn't help but feel helpless. With all the knowledge and training that I have, I knew that there is no cure for this disease, yet. One person there had concerns that her husband may have Alz. She was afraid to tell him that she was going to attend the meeting, and had questions "that only a doctor could answer." Unfortunately, I did not have a lot of answers, but I think she felt ok with what I said.
"In this day and age," one of the group members said, "older people would rather have cancer than Alzheimer's Disease." I have not stopped thinking about this statement since that night. Such a powerful statement, yet, I believe it's true.
4 comments:
It is true. I know I would!
It sounds like you got alot of feedback from your meeting. They must have felt very comfortable with you to ask some of these questions.
Wish I could have heard your talk.
Dr. Anon ... anything but Alzheimer's., or Cadasil, or some other "dementia."
There are some pretty awful ways to go, but I think having your body outlive your presence by years has got to top the stack.
Wish I could have been at your talk ...
As I learn more and more about this, I feel more frustrated and helpless - but the both of you know this already. Thanks for your comments.
They've been drawing some strong connections between CADASIL and various migraine/headache processes. Sometimes I worry that this is going to be my fate. I know I'm a little young to be worrying, but does it count that I've already noticed my memory isn't as good because of having a constant migraine? I worry that it is killing my brain... One of my CT scans even said that "Mild volume loss is evident." Ohhhh that's not a good sign. I used to think I was smart - and now I'm starting to question myself...
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