quash
Alzheimer’s Association is doing a new fundraiser that looks really interesting. It’s called Quash. It’s a scavenger hunt being held during June in three cities: Philadelphia, San Diego and Indianapolis. It looks like a lot of fun and a great way to raise money. Only wish I lived in one of those cities. Hopefully they’ll expand their offerings.
training
An interesting article about caregiving and training. It stresses that despite the findings that a bit of training can ease caregiver stress, finding time for training is often a problem. Another problem is location-if you’re living away from where training is easy to reach, it’s that much harder to get what’s needed.
a caregiver speaks out
A caregiver to a woman diagnosed in her 40s is speaking out about their experience. There are a lot of cracks in the health care system, especially when it comes to this disease. It’s great to have so many younger people stepping forward and to have coverage of it.
chuck johnson fights back
The Washington Post featured a story on Chuck Johnson, who is one of the people that testified in Congress with Sandra Day O’Connor. He has familial early-onset Alzheimer’s. What i found remarkable about Mr. Johnson was the last paragraph of the story.
He once thought he would turn to suicide when the balance of his existence finally tipped. Now he is not so sure. In conclusion to his testimony this morning, he plans to tell the Senate committee that he wants to be “an Alzheimer’s survivor.” He thinks saying that can make a difference.
He also believes:
“I could be in too big a hurry to get to the end and miss grandkids or a medical breakthrough. . . . Right now, I have a good life, even with the bad days.”
I’m sure some of us who have dealt with the disease think about what would happen if we develop the disease ourselves. I’ve often said that if I am diagnosed with AD, I’ll kill myself when it starts getting bad. Mr. Johnson seems to have the more positive outlook and I think his experience is very valuable. It’s great that he’s being given a forum to share it.
story corps-memory loss initative
StoryCorps is an great initiative that helps families and friends record their stories. The idea behind is to record a story. Sometimes it’s a revelation, sometimes it’s just reminiscing. They have a special initiative, the memory loss initiative. It’s specially created for those with dementia and they have a few examples on their website. It sounds like a great project, one I’d love to be a part of. But I think the idea of actually confronting this on tape is a little too much for me. At least for now. Probably by the time I’m ready, it’ll be too late.
testimonies
Former Justice O’Connor testified today in front of Congress about the need for research and funding. One can only hope that hearing testimony like hers encourages Congress to increase funding instead of reducing it.
sportswriters
Jim Nantz just wrote a book about his father’s Alzheimers, Always By My Side: A Father’s Grace and a Sports Journey Unlike Any Other. Here’s an interview with him on CBS News.
Charlie Pierce, wrote a book about his father’s Alzheimer’s that I found interesting. It’s titled Hard to Forget and chronicles his struggles to accept his father’s disease. It also talks about the research from that time and interviews with other people struggling with being a caregiver. Here’s an interview from the NPR show The Connection in 2000 with Charlie.
restaurants and alzheimer’s
My parents recently came to visit me in Durham. As Dad progresses, it becomes more and more stressful, which I find sad. i remember when it used to be so much easier. Don’t get me wrong, I love seeing my parents.
The hardest part is going out to eat in restaurants. We went to the Wild Wing Cafe, partially because I forgot how noisy it was. I like to take my parents out because they don’t get to do it much where they’re from. Watching Dad working on sliding into the booth, a process that requires a lot of instruction, I looked at the waitress watching. It’s become obvious now that my dad is no longer “right”.
It made me wonder what she was thinking, what they were all thinking. Alzheimer’s isn’t necessarily the first thought looking at someone that young. Did they think he was mentally handicapped?
alzheimer’s-like disease
An interesting story from Good Morning America. Four year old twins Addison and Cassidy Hempel suffer from Niemann-Pick Disease Type C, an Alzheimer’s-like disease.
“Affected individuals gradually lose their reasoning abilities, perceptual abilities, ability to make decisions,” said Dr. Marc C. Patterson of the Mayo Clinic. “But in addition to that, they also have physical difficulties, particularly with balance, coordination.”
I think that what makes this terrifying is, even though it’s not Alzheimer’s, it’s Alzheimer’s-like enough. The idea that children this young could suffer symptoms is horrifying. It makes me wonder if, as we learn more about this disease, we’ll see diagnosis of Alzheimer’s younger and younger. They say that small symptoms can start years before they’re serious enough for a diagnosis.
But what would you do if you found out at a young age about your fate with this disease? What if you could find out whether or not your unborn child will have it? How would that affect the rest of your life?
