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Showing posts from August, 2011

Something To Do For The Entire Month Of September!

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The entire month is Alzheimer's month, so here's a site which will let you help us to get the word out. Just click here to get started.



Click here for an easy and free way to help care for those in need at The Animal Rescue Site!
Thanks

Bill


Doin' The Horizontal Boogie (RLS- Restless Leg Syndrome)

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This is 2 weeks running I haven't been able to sleep because my brain's telling my legs to do a 50-mile triathlon while flat on my back.

Yep, as if I needed one more symptom to add to my list of afflictions, I can now add restless leg syndrome. If you have it too, you'll know what I'm talking about: it's a neurological condition with no known definitive etiology (med-speak for "cause"), but in my case I'm wondering if the fact I'm on three kinds of anti-depressants is causing this.

It's right now 6:10 am and I've slept maybe 30 minutes tonight. For the week, maybe 3 hours, and I'm irritable as hell.

This is nocturnal, so I figure my autonomic nervous system needs a fine-tune with some chemical assistance. (I take so much medicine and supplements now, it's like eating a small meal!).

FAST FORWARD.....

The doctor told me Thursday I'm taking too many anti-depressants, so we cut back the Welbutrin to 150 mg just once a day. Indeed, …

It Takes ALL OF US!!!!

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T.S. Elliot wrote: "Footfalls echo in the memory
Down the passage we did not take"

What does that mean to you, my friend?

To me it speaks of regret. Regret for things we did not do, but wanted to. and perhaps not leaving something of yourself behind when it's "your time"?

We all need our "Bucket List". I have mine and have been fortunate enough to have been able to do almost all the things on it. I have no regrets now and will have none when I lose what's left of my mind or go where the dolphins went in the book "A Hitchhiker's Guide To The Galaxy" by Douglas Adams - whichever comes first. Although I do hope Mr. Reaper takes me before Dr. Alzheimer does, as I do not wish to be a burden to anyone, especially my sweet wife.

Okay, enough of that. Are you having a good weekend so far? I am. I hear Dondra puttering around in the kitchen, and it is a sound I crave to hear, because when she's at work and I am here alone, it doesn't …

Magic, Cycling and Politics: Another Potpourri Day

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As a respiratory therapist in the ER, I used to do a little magic for my pediatric patients to help pass the time and allay their fears. I also did a little puppetry with my buddy "Dr. Bob".

Recently, I decided, as a memory booster to get back into it if I could and decided to see if there's a website for magicians. Luckily, I found one on the first try at genii. (Just click on the link above to take you there). I introduced myself, told them a little about me, and the next thing I know I'm being taken under their wing, with suggestions for books free books (thank you JordanB) and tricks I can learn easily. Richard Kaufman, who has written the book Magic Tricks and who runs the site, suggested the use of note cards as a help to me. So I'm going to try to put together a short show maybe for Christmas.

Here's One I showed Suzette when she came for her weekly visit this past Tuesday: The Magic Coloring Book which is one I did for the kids.

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I'm trying my b…

Improv Theater For Young Onset Patients!

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The poet William Stafford (1914-1993) wrote: "Let the bucket of memory down into the well, bring it up. Cool, cool minutes. No one stirring, no plans. Just being there."

To me, that means "take the pressure off yourself, relax and let those old memories come if they want to." I reminisce a lot these days, and often I have found that the old memories trigger the most recent ones. It doesn't happen a lot, but it does happen. Kinda like trying to think of that actor or actress you like so much, and that name being "just out of reach", and suddenly, when you're not even trying to think of that name, there it is.

We have Young Onset Alzheimer's, NOT death, and these are the days for working our brains and sharpening our cognitive memories. There are all kinds of "brain games" online and advice at your local Alzheimer's chapter to help you get started. If you happen to have a Kindle, there's a game called "Every Word" whi…

NAPA Town Hall Meeting 8.13.2011

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Just got in the door from this meeting and wanted to tell you about it before it all fades away. First, I'll tell you what we discussed and then I'm going to throw out some "Did You Know's".

Represented at today's meeting were the chapters in Atlanta, and via Skype, those in Columbus, Macon, Augusta, Dalton, Savannah and Tifton. Before things got underway, Kris Bakowski (previous blog interview here) talked to us. Kris is a member of the Atlanta Regional Board, and is on the steering committee of the Northeast GA walk in Athens. There was also a short address via tape by President Obama, during which he spoke of his signing of the National Alzheimer's Project Act (NAPA) this past January and also pledged his continued support in finding a cure. In short, the President acknowledged that NAPA is a good start, but there is much work yet to be done.



Today's session was moderated by Cory Thompson, Secretary of the Georgia Chapter and our format was that ea…

Not A Real Good Week Last Week

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The forgetting words is getting worse. It used to happen just very sporadically, but now about 80% when I speak and about 30% of the time when I write. "What do you call this thing?", Dondra answers that "it's the thermostat, Bill". Stuff like that.

It's very unsettling and frustrating, especially when I forget the names of my grandchildren. In that instance, I compensate and call Julian, "the little one", and Amber "the 19 year old".

Dreaming of not knowing where I am, and asking myself if this is a signal that things are about to get much worse?

Not being motivated enough to play my musical instruments, play Warcraft or read.

Not sleeping well.

Today, Dondra used some new terminology with me: "I wish you'd let go of that!", meaning I saw some stuff in the freezer in bowls, and asked her if this was some food for her widowed brother that he could heat up?

Apparently, I had asked that same question numerous times this past…

35 Days Till Medicare, Dammit!

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That's right, I'm not particularly pleased about that, just as I wasn't pleased when I got that first letter from AARP.

I. AM. NOT. OLD!!!!!!

I know what you must be thinking to yourselves, "You oughta be glad you're getting it, Bill! It'll make things much easier for you, medically."

Yeah, okay. It will make things much easier for me, but I wish with all my heart that I didn't have to be on it, and I wish with all my heart that I didn't have to use it. But I do. I know there are folks less fortunate than me that need it and must be fighting to get it and here I sit, trapped inside this body with a batshit mind which isn't of any use to anyone, especially my patients whom I miss so much!

Lately, I've been getting tons of mail from the Medicare folks advising me on what plan(s) to choose, what it will pay and what it won't.

I've just told Dondra to take a look and choose the best plan for me. Your input is appreciated as always, of …

A Fellow Young Onset Alzheimer's Patient Speaks

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As I did way back yonder, from time to time, I like to feature a guest and this time it's someone who was diagnosed in her 40's. Her name is Kris Bakowski, and if you're a patient or caregiver, I invite you to read her blog as well as this one.

Additionally, if you as a patient or caregiver, want to take a shot at these questions, please feel free. It's all information and that's what this blog's about.

There was one other person I wanted to feature, but after I left a message, I haven't heard back, so if you're out there, please get in touch, thanks.

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Since being diagnosed, what has been the most difficult of your symptoms to deal with and have you begun experiencing different/additional ones since then?


Answer: I have several symptoms that bother me a great deal. The most obvious one to me is the problem with noise. I have a very hard time concentrating in a noisy environment. Restaurants, …