“Hello, my name is Richard, and I have Alzheimer’s disease.”

Posted by RichardTaylor at 28th October, 2009

“Hello, my name is Richard, and I have Alzheimer’s disease.”

And, what is it I actually have and what don’t I have?

The National Alzheimer’s Association sometimes claims it represents folks who are facing the issues of “Alzheimer’s Disease and other related Dementias.” (Check out their web site to see if in reality this is really what they promote - do they really practice what they preach - do they clearly define what it is they are preaching about?

Are some other Dementias in fact related to Alzheimer’s dementia? And, therefore is Alzheimer’s dementia in fact related to some but not all other forms of dementia? How? Where are the two lists? - One list of forms of dementia that are related to Alzheimer’s disease and the other is the list of forms of dementia that are not related to Alzheimer’s disease. And, by the way, why should everyone or anyone care?

“Well do I have “it” or not?” I ask my Doctor-of-the-moment.

“Dementia for sure, probably of the Alzheimer’s type” s/he forthrightly responds.

“Well what exactly is dementia, and how is the Alzheimer’s type different from other types? And by the way how come you aren’t really sure what type I have?” I respond.

“I know for sure you have dementia. I just don’t know for sure what type you have.” s/he further responds.

“Well what if I have Alzheimer’s form and some other forms too? How will any more specificity than what you gave me in your diagnosis help me decide which medications to take, what symptoms I can expect, how I should form, manage and evaluate a treatment plan for myself and my family?” I ask.

“Here is a pamphlet from the Local/National Alzheimer’s Association. Go ask them these questions. I write the same prescription for many of the forms of dementia. I’ll treat your side effects of dementia, no matter what form, the same general way, with the same families of drugs.” s/he answers.

“Well can I, do I ‘probably’ have other forms of dementia too, in additional to the Alzheimer’s form?” I next ask the medical authority I have chosen to help me live with what seems to be a chronic condition (that is another can of worms I won’t open here). “We will just have to wait and see, sometimes as the symptoms progress or new ones express themselves I have to change the diagnosis to some other form of dementia, or recently I have changed the diagnosis to ‘mixed dementias.’”

“Wow, I sure start lots of sentences with ‘well.’ I silently observe to myself.”

“Oh!?” I respond as I walk out of the doctor’s well-appointed office knowing:
A. more than I need to know
B. less than I need to know
C. more confused about what is really wrong
with me than when I first walked in
d. All of the Above.

My answer was d.

“And I paid 20% of a usual and customary charge/a co-pay to know this/what?”

Confusing, is it not. Does it have to be? Why?

This is how Wikipedia defines Alzheimer’s disease - A Mental disorder from brain tissue changes.

Is this what neurologists really mean when they say to someone (such as myself) “You have Dementia, probably of the Alzheimer’s Type?”

Now I ask, “What tissues and what changes produce a mental disorder that has been labeled Alzheimer’s disease?” And so on goes a continuing conversation with others and myself. I am increasingly unsure why I carry on these imaginary conversations in my head. Is it me or the disease talking?

Richard

Category : Blogs / news

Comments

Deb Donofrio December 14, 2009

The above URI is my husband’s blog. We have been reading your book and he has been blogging about his “Alz” for a few months. Please check him out. Because he is new to blogging (and has EOA) he is having trouble remembering to read your blog. I have been reading it to him and we love it and you!

Deb and Chuck Donofrio