Friday, March 26, 2010

Lewy what? cont.

So everybody seems to know about Alzheimer's, I guess that's the face of dementia diseases, but Lewy body is just as prevalent. It includes delusions and aggression, hallucinations that the person swears are there. I think Dad had it all along, and while the Brighton people swore they knew how to deal with it, they were always watching Dad for more bad or aggressive behavior. I'm pretty sure he picked up on all the watching and it just made him act worse, or become more withdrawn. It's possible that people with Lewy body are better able to form new memories than those with Alzheimer's. It may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom, too.
I haven't been updating the blog as often because, thankfully, Dad has been happy and comfortable and there have been no crises. As I enter into Hospice volunteering, however, I'm sure I'll have many general stories to tell about the people and events I experience.

Monday, March 15, 2010

Lewy what?

I've been mentioning Lewy Body dementia now for a few months, ever since Dad's doctor reassessed his preliminary diagnosis. What is Lewy Body, one asks. Interestingly, before this last summer, I had never heard this word before. Then I fell into conversation with a woman at one of my art shows whose husband had just died, and she said it was from Lewy Body, a Parkinson's-related dementia. As is so often the case, after that, I heard the word everywhere; suddenly, it had become the newest dementia diagnosis. It's a kind of dementia, and for those of you who don't know, dementia is basically a general decline in cognitive abilities due to degeneration of the brain. Its a symptom, not a disease in itself. Alzheimer's is the most common form of dementia, but Lewy Body is now thought to be the second most common. It causes cognitive problems like those in Alzheimer's, and motor problems like those in Parkinson's. It also seems to have its own passel of horrid and challenging symptoms not found in Alzheimer's. It seems to rapidly be becoming the most difficult and feared form of dementia, from all the accounts I've heard. (cont.)

Tuesday, March 9, 2010

Personal post

Well, Dad continues to do really well in his new home. The last time I stopped in he was either shopping, walking, or playing a rousing game of tennis. The man has a better social life than I do! I still think every phone call could be from the owner of the facility, telling me something has gone wrong, Dad's landed a punch on someone... I suspect this low level anxiety will never completely go away until Dad's no longer with us. So far so good, however.

On another note, I interviewed with a Hospice coordinator yesterday. She thought I'd make a good candidate, and my training has begun. As we talked, she detailed the job: the kind of people I'd be likely to meet; the situations I'd be walking into; the likely reactions of patient and family. We talked about dementia and the fact that I already had a background in it; apparently, some of the volunteers refuse certain patients, saying they don't 'do' dementia. But as the coordinator pointed out, sadly almost every house I'll walk in to these days will have someone with some form of dementia; the patient, his or her spouse/caregiver, another family member. This reminded me of the statistics I've quoted in my letters to agents. 1 in 3 people know someone affected by dementia, 1 in 10 Americans have a family member with some form of dementia, and 7 out of 10 sufferers live at home, cared for by, you guessed it, a family member. Its no wonder that this has been called a major epidemic of our time.

Tuesday, March 2, 2010


To all you Youtube fans out there, this was sent to me by one of the founders of the site for people with early-onset parents, Spoke Your Mind. If you have a minute, check out the video and vote! Joy

Hey there!

I need only a hot second of your time...

So I recently submitted a short documentary video that spotlights Max and
his dad (who's living with Alzheimer's) to a Neuro Film Festival.
There's a YouTube contest going on for "Fan Favorite" with a chance to
win a $500 prize. If we win, the money will go directly to Spoke Your

Simply follow the two easy steps below and find our video titled: "The Music in Hugh: A Look at Young Onset Dementia".

•Step 1: Visit and log in using your YouTube username and password to view entries. If you don’t have an account yet, sign up now, it’s quick and easy! Gmail users can sign in using their Google username and password as well.
•Step 2: Once logged in, rate each video in the playlist using the star system in the lower left corner, near the play button.
have been turned off to allow each video to stand alone and ensure
fairness in judging.

Thank you for your vote!