short video
A short video from Shelton Films called My Name is Lisa. It won a 2007 award for best short film from YouTube. It’s about a girl and her mother with Alzheimer’s. Simple and well done.
a letter
An excellent letter by Alex MacPhall about his wife’s early-onset/young-onset Alzheimer’s disease in the Plainfield Sun. It captures the anger and disbelief in a diagnosis at an early age, but it also talks of the relief in diagnosis and encourages more discussion about Alzheimer’s in younger and younger victims.
false hope
An article out of the UK. A Dr. Tobinick apparently claimed that an arthritis drug, etanercept, could cure Alzheimer’s disease. I think what examples like this train us to do is to not get our hopes up. All of us dealing with disease want a cure so desperately that’d we’d do anything to find one. The sad thing is that that desperation leads us to want to believe in someone, anyone, if it means a chance for our loved one. It makes the let-down that much harder.
spotlight on sufferers
The Washington Post had an article in their April 11th edition profiling Jim Mueller, an early-onset Alzheimer’s sufferer diagnosed at age 36. The article addresses the devastating financial impact that the diagnosis had on them. When Jim was no longer able to be the breadwinner, they unfortunately lost their house and car and now live on disability and social security.
The article also addresses how Alzheimer’s affects the family dynamic. Jim says about his kids:
“They know dad’s sick,” he adds. “So they don’t push me like they used to. I do see them all the time, which is good. But it’s not the same. They kind of leave me alone. But they’re very smart kids… They’ve been very helpful and thoughtful, and they’ve given up a lot.”
His wife has also had to take charge of the family, a role that was previously Jim’s. The stress of having to take care of finances, young kids, and a husband with this disease is stressful.
It’s an all-too-typical story of the challenges faced by young-onset sufferers that aren’t always faced by older sufferers.
story of forgetting
NPR’s Weekend Edition on Saturday featured a story about Stefan Merrill Block who wrote a book called Story of Forgetting. Click here to listen to the story and here to visit Block’s official website. Here’s his site’s description of the story:
Abel Haggard is an elderly hunchback who haunts the remnants of his family’s farm in the encroaching shadow of the Dallas suburbs, adrift in recollections of those he loved and lost long ago. As a young man, he believed himself to be “the one person too many”; now he is all that remains. Hundreds of miles to the south, in Austin, Seth Waller is a teenage “Master of Nothingness”-a prime specimen of that gangly, pimple-rashed, too-smart breed of adolescent that vanishes in a puff of sarcasm at the slightest threat of human contact. When his mother is diagnosed with a rare form of early-onset Alzheimer’s, Seth sets out on a quest to find her lost relatives and to conduct an “empirical investigation” that will uncover the truth of her genetic history. Though neither knows of the other’s existence, Abel and Seth are linked by a dual legacy: the disease that destroys the memories of those they love, and the story of Isidora-an edenic fantasy world free from the sorrows of remembrance, a land without memory where nothing is ever possessed, so nothing can be lost.
I find it interesting to see early-onset Alzheimer’s disease appearing in fiction in this way. Reading Block’s article in The Guardian , it’s revealed that his family has been affected by Alzheimer’s. It makes me wonder if for people inclined to write, Alzheimer’s consumes their writing at one point in time or another. In my minor attempts to write, it’s often about Alzheimer’s. I can’t seem to escape it.
first link
First link: the 2008 Alzheimer’s Association report. According to the report, the association estimates approximately 500,000 people under the age of 65 and approximately 200,000 of those people have Alzheimer’s disease. It seems like a small amount, especially when they estimate that 5 million people over the age of 65 have Alzheimer’s disease.
an introduction and explanation
There’s millions of blogs out there. So why should you read mine? Why did I even start one?
I think I have to start with a background. I’m 25 years old and my father is 61. When he was 54, he was given the diagnosis of early-onset Alzheimer’s disease. Like most people in the world, we thought that it couldn’t happen to people so young, that it was a mistake. So far it doesn’t seem like it was a mistake. He’s progressed steadily over the last six years. Despite two medications (Excelon & Namenda) there doesn’t seem to be any stopping the inevitable.
One of the hardest parts of the disease for me is not finding too many people to talk about it with. There’s plenty of people affected by Alzheimer’s disease-millions in fact. It’s becoming more and more rare that you meet someone who hasn’t been touched in some way by the disease. But most of its victims are older. They have different needs than an 18 year old, terrified about their parent. I went through college feeling very alone. So I’d like to help anyone that I can to have a resource aimed directly at them.
I’m not an expert in any way. I’m still learning. I’d like for this blog to be a learning experience, personal reflections, and a place for those people dealing with the things that I am to have a place to connect.
I’ll try to update often because there’s no end in sight to the advances they’re making.
