Thursday, January 29, 2009

Voices Of Alzheimer's Disease II

This will be the second installment of my own responses to questions posed to a group of Early (Young) Onset Alzheimer patients during 4 live and one virtual town hall meetings in August of 2008.

Kris Bakowski was one of the attendees of this event and kindly sent along a summary report which you can read at

Response: "Healthcare professionals need to take us more seriously and most of all listen to our questions and concerns........treat us as if we were their mother, father, sister or brother."

Those of you following this blog know that I am in the healthcare field and so have a little more grasp of the terminology, signs and symptoms of AD, but I am also a patient, so much of what my neurologist is telling me I am hearing for the first time.

I do, however, have a very good relationship with Dr. K, and I am (guardedly) looking forward (Damn! That still doesn't sound right) to the 72-hour EEG and the Neuro-Psych testing so we can figure out where I am in the AD "scheme of things".

But see, I'm the exception, aren't I?

So what I would recommend to anyone being concerned about dementia either the patient or the patient's care-giver is inform yourself. PLEASE.

Read everything you can get a hold of on Alzheimer Disease! Learn the terminology and use it when you go for an exam!

Do not let yourself or your loved one get "flim-flammed" by some fast-moving physcian with dollar signs in his eyes, and stop him if he tries to dismiss you!

*Whew* ..... What I just now wrote up there, doesn't help, does it?

"Why doesn't it?", I can hear you asking me. And I reply:

"Because, dear friend, if you have to work that hard to get him to pay attention, then he wasn't worth a shit in the first place, was he?"

But please do educate yourself about Alzheimer Disease, because the odds are someone close to you has it or soon will, and you are going to want to know how to support that loved one, because with so many future diagnosed cases , there aren't going to be enough medical personnel to help.

That's my dour prediction if we don't "get a grip" and get it soon.




Margaret said...

Very, very moving, the occasion and the song.

Bill Craig said...

Yeah. It's a repeat of a previous load, but I thought it bore repeating.

Thanks, Margaret! :)