See updated article, click here.
Great news breaking a few days ago from AARP — you know the’old folks’ lobbying group.
I have forgiven them a long time ago for inviting me to join them when I was 50. Now at 58 and a card-carrying member, I have a new beef with the group.
And it comes out of the praiseworthy announcement headlined online like this:
AARP Invests $60 Million to Fund Research for Cures to Dementia and Alzheimer’s
“This move reflects our ongoing commitment to people with dementia and family caregivers”, wrote Jo Ann Jenkins, CEO of AARP.
Later she writes:
More than 6 million people in the United States suffer from various types of dementia, including Alzheimer’s disease, and those numbers are growing at an alarming rate. Based on current projections, by 2050 that number will exceed 16 million, or about 1 in 5 Americans age 65 and older.
My beef?
She never mentions anywhere in the article the name of the 2nd leading form of dementia after Alzheimer’s: Lewy body dementia.
I wish I could say I was surprised. But Lewy body is the disease with no name it seems. Name it. Lewy Lewy.
I was diagnosed about two years ago. They say the average lifespan is about 4 to 7 years, (some stats say 8 years) after diagnosis. Of course there are many exceptions. The Lewy joke is if you know one Lewy patient, you know one Lewy patient.
I have been trying to raise awareness of this disease ever since I was diagnosed. It’s important, I believe not to lump all dementia cases together. Lewy may have similar symptoms as Alzheimer’s but it’s a totally different malfunction in the brain. Lewy body’s brain malfunction more closely resembles Parkinson’s disease.
Many primary care doctors, based on the anecdotal evidence I have received from readers, are not familiar with Lewy body dementia. Patients don’t know to ask about it. Yet I continue to see its name omitted in stories about dementia. Say its name: Lewy Lewy.
Some in the medical field call it a disease that’s on a spectrum with Parkinson’s, and that seems possibly is true. But if we’re lumping all research under the nomenclature ‘Parkinson’s’ or Alzheimer’s we may never discover, much less cure, a separate disorder called Lewy body dementia.
Say its name. Lewy Lewy.
It’s kind of like now we are building Spacehip Research to launch into space with no destination beyond planets Alzheimer’s and Parkinson’s. Hey what is that planet we just passed? Not Pluto, it’s Lewy Lewy.
What to do?
Read up on the disease. Go to the website of the Lewy Body Dementia Association.
I have a blog where I count down my vinyl records to raise awareness; In addition to lots of music reviews, it has lots of stories about my experience with the disease. It’s called www.myvinylcountdown.com,
At my website hit the ABOUT ME button for more, er, about me.
Read about the AARP money by hitting the headline with the big letters at the beginning of this column.
Last year a fund-raising basketball tournament in my name raised $13,000 for the Lewy Body Dementia Association.
This year we have the 2nd Annual Mike Madness basketball tournament. Sign up to play. Or just come to watch on July 21 at UAB Recreation Center. Hurry sign up to play is July 15.
If you can’t come, please consider a donation. This year, in addition to LBDA, we are giving to UAB for Lewy body research. We are much excited about that.
Details here:: https://mikemadness.org/
Help spread the word by saying its name: Lewy Lewy.
(Or singing it.)