Voices Of Alzheimer's Disease II

By Bill Craig
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 http://www.alz.org/national/documents/report_townhall.pdf.

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.

Thanks

Bill

Comments

Margaret said…
Very, very moving, the occasion and the song.
January 31, 2009 at 11:22 PM
Bill Craig said…
Yeah. It's a repeat of a previous load, but I thought it bore repeating.

Thanks, Margaret! :)
February 3, 2009 at 5:13 PM
Post a Comment

Popular Posts

Thanks, Suzette!

By Bill Craig
Image
My friend and dementia counsellor Suzette recently wrote a very informative (and flattering) article about the "German Boy" and his upcoming bike ride, and you may see it by clicking the title of this entry. I am very appreciative of her and the GA chapter of the Alzheimer's Association for supporting me, and my ride is dedicated to them, Alzheimer patients and their caregivers as well as the four-footers. Incidentally, D and I were finally able to attend this month's Forget Me Not luncheon (for Alzheimer's patients and their care givers) at South of La Paz Mexican restaurant in Atlanta and I'd like to thank my friend for making this possible. Really , Suzette's so sweet she makes ya wanna roll over and do all kinds of doggy tricks for her! I kid, of course, but I don't think I have ever met a more charismatic person in my life. It was also a pleasure to meet and converse with Kathy Simpson who also works with the Georgia chapter. Kathy and I have e-m
Read more

Skipping Ahead A Bit In The Memoirs

By Bill Craig
Image
This is part of something I wrote on another message board with some editing, okay? -------------------------------------------------------------------------- My very good friend on the Dope, Oakminster , brought this to mind when he shared this in a thread of mine called "Your Favorite Commercials". Okay, I have already mentioned that my American soldier Dad brought me and my German Mom and brother to the US in 1960. At that time, I still spoke with a very heavy German accent and did my best to try to fit in. One of the ways was to "go out" for "Midget Football" and it was my first encounter with who would prove to be an inspiration to me and I am sure many others: Coach Roger Sauls who passed away last year. Coach was very patient with me, teaching me the "ins and outs" of throwing and kicking that strange looking egg-shaped ball! In those days, a lot of little boys went out for it and we all had our heroes on the Villa Rica Wildcats Varsity t
Read more

Alzheimer's Advocacy Forum 2011

By Bill Craig
Image
I have been given a great opportunity and honor from my local Alzheimer's Association and my counsellors Suzette and Kathy, and I wanted to tell y'all about it. It is a chance to be granted a scholarship to attend the Public Policy Forum/Advocacy Action Summit which will be May 15-17 2011 in Washington, DC. It will be a time to become educated about the issues, learn new skills, network with fellow advocates and take our message directly to members of Congress to fight for our legislative agenda and I am honored to have been chosen to have my name submitted for this event. If I am chosen to receive the scholarship, I plan not only to participate in all of the above events, but to serve as a "reporter" and write about what I see and experience there. This will also allow me to put to use my journalistic skills which have been "moth-balled" of late. Quoting from Karen Kauffman's* article, 2010 was a year of optimism for those of us in Alzheimer's Advo
Read more