Monday, February 13, 2012

What the Dr. said...

The doctor said that Ed is in the 10% of people with ad that get non aura migraine headaches, which he was getting at least three to four times per week. He got some medication for them. Also Ed is up at night which if you look up early stages and symptoms is quite commom...but he was also given medications for that. He cannot be a part of the special study because his arecept was raised to a therapeutic dosage in December, and he has not been on it long enough to qualify for this study. The arecept has improved memory and repetitive questions... but if you know Ed you can see some personality differences. I love his sense of humor about it all as he writes in this blog...and his intelligence...and that is truly "our" Ed. But at times he is obviously not himself...and that's life with ad.

Glen Campbell; - Forget Me Not...

The Rhinestone Cowboy plays one last concert in Phoenix this Saturday...but I won't be going.  I am sure it will be fine, but I've learned through bad experience that paying good money to hear big name acts on their last go round can sometimes be disappointing.  No... I'd prefer to remember him as great as he once was.

Nonetheless NPR had a nice piece about his own journey with Alzhiemer's.  Apparently the disease does not care if you are a celebrity or not... you can hear it here:

Glen Campbell -Forget Me Not

But what a career...

Here are just several of my favorites to remember him by:

By The Time I Get Phoenix    - How young he was...

And Finally - a tribute to his wife...

Thursday, February 9, 2012

I'm shocked... SHOCKED!

Well... not exactly today, but maybe someday.  Mindy and I visited Dr. Flitman, my AZ doctor, yesterday to seek a remedy for some recurring headaches and insomnia I've been experiencing lately...  he prescribed a couple of more medications...   but after nearly six months since my diagnosis, he seems optimistic that, because I am afflicted with the least aggressive of the three genes that cause Alzheimer's, I might actually have as many as five years before I progress into the next stage of the disease.   We also agreed to be screened for a new Alzheimer's study... but I have to take some sort of lucidity test to get in...  and the ironic part is, if I am still too smart, I fail... and won't be admitted to the study...  go figure...    stay tuned...

Meanwhile, there have been some interesting articles and developments recently related to the disease.  Please click on the titles for direct links to each expanded article...

- Obama Administration Increases Funding for Alzheimer's Research & Caregiver Support
The Obama Administration announced yesterday a $130 million increase over two years in the funding for Alzheimer’s Disease research, as well as $26 million of additional funding for support of caregivers and other programs toward the prevention and treatment of Alzheimer’s.
... two independent, new studies suggest that Alzheimer's spreads from cell to cell rather than independently forming randomly  throughout the brain.   DUH!   ...while this seems rather obvious to the lay person, it is only now being scientifically proven.   This is because that serious research about Alzhiemer's has only been underway since the 1980s.   Considering that Alzhiemer's affects 5.4 million Americans and will approach epidemic levels as the population ages, you'd think we'd take it more seriously.  The disease manifests itself in another American every 69 seconds....
An electrical brain-stimulation technique used to treat Parkinson's disease and chronic pain appears to enhance human memory as well, according to a tiny but intriguing new study that bolsters hope for one day developing a nondrug treatment for memory problems, including ailments like Alzheimer's disease.

Saturday, February 4, 2012

A Story About Another Ed...

Ed Was More Contented with Alzheimer’s Disease:
What If He Hadn’t Gotten It?

I’m writing to tell you about a most unusual person with Alzheimer’s.

You’re going to think I’m crazy. You really are.

But to tell you the complete truth I have to tell you that Ed was far more contented when he developed Alzheimer’s than he ever was before. Yes, this is true.

Ed, my beloved Romanian soul mate, was in his late 80s when he began becoming demented. He knew something was wrong. He was endlessly frustrated and afraid of his early symptoms. What’s more, he spent a lot of time thinking about death.

He was angry and depressed. He drank to excess – starting at noon and continuing all day and half the night.

He drank vodka, and he didn’t drink it from shot glasses. He filled a regular water glass half full every time he wanted a drink. And he wanted a lot of drinks.

He stayed up until 3:00 in the morning and he slept until noon. Then as soon as he got up he started drinking again. Was he an alcoholic? No. He just drank a lot.

I couldn’t take care of him at a certain point and we fought constantly about him going to a nursing home. He said he’d die first. But eventually he became so demented he forgot his opposition to the idea and finally agreed.

Once at the nursing home he had to stop drinking. They wouldn’t let him have any alcohol. He was furious, as you might imagine, but shortly after that he forgot all about alcohol and never asked for another drink.

He was still depressed, however, and so his doctor put him on an antidepressant. Within a few weeks he was a new man. He became the sweet, loving and loveable man I’d known years before. He became tremendously contented.

He loved the staff and thanked them repeatedly when they did anything for him. And I mean anything. When the cleaning lady came in to empty his trash basket he thanked her over and over. Then he kissed her hand and told her how beautiful she was and how lucky he was to have her help.
He was also contented with his financial situation. He once told me confidentially that the American government was paying for his nursing home stay! I just let him continue thinking that.

His depression soon went away and he became a joy to be with. Everyone at the nursing home just loved him to death and he loved them as much. Once one of the young girls who worked in the kitchen asked him, “Where were you when I was looking for a husband?” He and I laughed a lot about that question.
He no longer worried about death because he didn’t have the capacity to think about the future. And he didn’t stew over any unpleasant things that happened to him because he forgot them all very promptly.

Before he moved to the nursing home he was extremely verbally aggressive with me and I didn’t know how much longer I could take it. But after he’d been there awhile our love blossomed and returned to the state it was when we’d first met 30 years earlier. He was a true joy for me, and he himself was very contented – much more so than I’d ever seen him. He knew and experienced joy even on the last day of his life.

What if Ed never had Alzheimer’s?