Michael Ellenbogen started showing signs of dementia at age 39 while an IT executive with a financial services firm. After being let go due to poor performance, he struggled to learn what was wrong. Doctors found it difficult to properly diagnose such a young man until a decade later.
Today, at age 57, Michael remains a fighter. One of the few who assertively “steps forward and speaks openly,” as the late Dr. Richard Taylor used to urge people with dementia to do -“Step UP and SPEAK Out.”
He’s been both lauded and criticized. Yet, he is the one who lives with the diagnosis of the leading cause of dementia and he is the one who feels a sense of urgency as he campaigns for greater awareness and perspective on the spending balance of research vs. care.
He doesn’t sit still long… enjoying the time he has left with his surgical-nurse wife and traveling when they can. They have one daughter who works in technology.
Before his recent multi-country trip which began in Florida, with stops in Mexico, Costa Rica, and Columbia, I asked him to get some FUN photos from his trip. Here are two.
But it’s not all play for Michael. He’s a prolific researcher (a challenge focusing enough to comprehend and to remember). He speaks, participates in online video chats, and writes (with the help of volunteers who edit his work).
At the beginning of this year a condensed version of his article, The Injustice of Alzheimer’s Disease, appeared as an opinion piece in a regional Pennsylvania-based daily [subscription required]. He addresses the ongoing stigma of Alzheimer’s disease and other dementias compared to other illnesses such as cancer. He reasons:
It seems that everyone is focused on curing cancer, which is admirable, but at what cost? Why can’t the same dedication, funding and determination be direct equally toward curing dementia? Do I not deserve the same level of compassion and focus?
When someone says they have cancer those around them embrace that individual and feel sorry for them. They always ask them how they are doing. When I tell someone I have Alzheimer’s, they first joke that they have it too. Then I tell them it is no joke and I do have it. Then they don’t know what to say any more. In fact, most of my family and friends tend to ignore it or never bring the subject up again, in fact many end up leaving.
Last fall, he wrote his wish to implement the “WWFD protocol” – to Withhold and Withdraw Food and Drinks” should he experience severe suffering or impose severe burdens on others.
We are fortunate today in that more people like Michael Ellenbogen are speaking out so that we PWoDs (People Without Dementia) have a better understanding of what people need before it’s too late and they can no longer express themselves.
Finally, he concludes The Injustice of AD article with:
Don’t get me wrong. I strongly believe we should be funding cancer. We should be funding both fairly. I lost my father, sister and father-in-law to cancer. The one thing they all had in common was hope. I only wish I could have some of that. Please help change that.
- The Caregiver’s Voice Features Michael Ellenbogen Alzheimer’s Advocate
- When should a person with dementia stop driving?
- A Global Message for Dementia Awareness [One-page call to action – pdf document]
- Michael Ellenbogen’s Plea to the President of the United States [Scroll to the bottom of the page that opens for Ellenbogen’s video.]
- Living Life to the fullest with Dementia – Sky Dive from 12,500 feet [6-min YouTube video] GO MICHAEL!