Saturday, January 24, 2009

From August 2008: Voices of Alzheimer's Disease

This is the report Kris sent me which I had planned to use as part of my series of entries on Alzheimer's In The Workplace, but every bit of it is so important that I'd like for you to read the whole thing in its entirety rather than me quoting from it, so here's the link: http://www.alz.org/national/documents/report_townhall.pdf

One thing that will shock you is what I alluded to in a previous blog entry: There are currently 5.2 million people in the US alone with Alzheimer's, and by mid-century that figure is expected to increase to 16 million. Those figures come from The Alzheimer's Association's report 2008 Alzheimer's Disease Facts and Figures. Half of those are people under the age of 65, diagnosed with "Early Onset" (soon to be called "Young Onset") Alzheimer's.

That's us "baby boomers", folks. What that means is that AD is no longer an "old person's" disease, and those of us in the work force right now with the AD diagnosis may not have enough in our retirement plans to see us through.

In the first paragraph I wrote that I didn't want to quote from the report verbatim, but what I would like to do is give you my impressions of some of the comments made at 4 "live" town hall meetings across the country and one "virtual" one. These comments were made by EOAD patients and they are very to the point.

Response: "......Some of them accused me of making a bad joke...... 'You can't have that - you're not that old.'"

Among those who know me well, I have the reputation as a bit of a joker, and so when I told one of my co-workers that my neurologist is treating me for Alzheimer's Related Dementia (the doctor's term), my friend looked at me expectantly as if to say "Okay, Bill let's have the punchline!", and when I didn't provide it, it was if he were in denial, not me.

When I encourage my colleagues to ask me questions about my symptoms, I can feel them pulling back, and it's like they don't want to know. These are people who work with me in our ER, but I suppose they're only human too.

Speaking of the ER (and the hospital in general - since I am the only respiratory therapist working the night shift), I am well aware of how precarious my situation is, and I am paying very close attention to my skills, since I am considered a "First Responder". I am very fortunate to have a boss who told me, "Just keep me in the loop, Bill", and that's what I'm doing. That is all I can do at this point.

Response: "I never had any problems driving; the police haven't stopped me even one time. The one thing that will bother me is when I can't drive......."

I, who have never had a chargeable accident in my life, am suddenly having fender benders in parking lots (2 in 2008). I cannot describe what happens, but I'm not paying attention, and I'm backing into cars, and once I let my scooter get away from me and hit another bike.

One thing which is scary is when I'm stopped and want to pull out into a street. The way will be clear, and out I go, but then I see a car behind me, and I will tell myself "I pulled out directly in front of that guy!"

To keep (sort of) on topic: I am lucky that I live only about 1.8 miles from my hospital, so if I had to, I could walk to work or ride my bicycle, but it's ironic when I think about it: If I were to get to that point, I'd probably not have a job.

There's more of my responses to my fellow EOAD patients to come, but I want to keep these little vignettes short, so as not to bore you, so let me just leave you with another link: Here's another guy who's not ready to throw in the towel.
http://www.cbsnews.com/stories/2008/03/08/eveningnews/main3919747.shtml

Enjoy your weekend!

Bill

2 comments:

Anonymous said...

Thanks for the link; very interesting report and comments. As a friend of someone with Alzheimer's I found the comments from those who felt abandoned by their friends very telling. I sure will try not to do that. Reading the report and reading your blog is sometimes painful but always informative, so keep up the good work.

Bill Craig said...

Wow! THANKS, A. Nonny Moose! :) I appreciate the comments VERY MUCH!

Sorry about the "painful".

Been thinking a lot about that "warts and all" stuff. Should I post on days when I feel okay or should I alter my style?

See, I really don't have anyone to crtique me - so I depend on y'all.

Thanks again

Bill