Michael Ellenbogen was diagnosed with mild cognitive impairment at the age of 39. Ten years later, doctors told him he had Alzheimer’s. His reaction can be summed up in a single word: “Overwhelmed.”
But Ellenbogen didn’t stay overwhelmed. He decided to fight this horrible disease however he could. He joined the search for a cure, enrolling in one clinical trial after another. He wrote a book about Alzheimer’s, spoke widely on the subject and became a fierce advocate for the 5.5 million Americans with Alzheimer’s.
Then came shocking news. The doctors were wrong. It seems he doesn’t have Alzheimer’s after all.
Ellenbogen, 59, revealed this stunning turn in an essay in the Washington Post last fall. After I read his remarkable story, I called him and he was kind enough to speak with me at length from his home in Bucks County, Pa.
Based on that interview, I wrote a story about his misdiagnosis, and his efforts to make a new form of Alzheimer’s testing — called an amyloid PET scan — more available to others like him who might benefit from it. You can read that story by clicking here.
But in a wide-ranging interview, Ellenbogen spoke to me about much more than that, offering the wisdom he’s gained from more than two decades of living with cognitive impairment. Here are outtakes from that conversation.
Q. I posted your Washington Post piece in a private Facebook group for people with MCI, and it got a strong reaction. People viewed it as a message of hope. Is that the message you were trying to offer them?
A. I wouldn’t say it was a message of hope. I would say it was more about the importance of taking advantage of all the tools available today. Also, that you really can’t trust what you’re being told because nobody knows for sure what you have until you have that biopsy after you’re dead. That’s part of the problem with the science today.
Q. Has your new diagnosis changed your advocacy? What are you focusing on now?
A. I haven’t changed my focus. I focus on almost everything related to the dementia cause. I will say I’m probably a little more honed in to wanting to push the issues of the importance of amyloid PET scans and why they’re so important right now.
Q. The official position of Medicare and the insurance companies is that there’s not enough evidence that PET scans are “reasonable and necessary for the diagnosis or treatment” of dementia. What is your answer to that?
A. The people who don’t feel there’s value are the people who don’t have the damned disease. I think I proved that more than ever. I don’t know how they make these decisions and how these companies determine these things. I think if you set some criteria, it may be worthwhile doing.
Q. If these PET scans do become more available, and more people get that clarity as to whether they have Alzheimer’s or not, do you think that has the potential to dramatically improve dementia care in the future?
A. I would think it definitely will, especially as they come up with drugs that can stop it from happening, just like you take drugs for cholesterol. They are going to figure out ways to manage it before it progresses. Some of those drugs that failed for people already living with disease, they are trying it with people at much earlier stages.
Q. In your piece in the Post, you write that even before you found out you didn’t have Alzheimer’s, you doubted your diagnosis. What made you question that?
A. I was just very skeptical about it because of what I’ve learned. Because of what I knew, I kind of thought all along I might have some FTD (frontotemporal degeneration) symptoms. It led me to think I had multiple types of dementia, not just one type. There’s just no way a doctor can tell you what you have. They may know what you primarily have possibly, but even then they might be wrong.
Q. It can be a struggle for people diagnosed with mild cognitive impairment to cope and stay positive. You were diagnosed with MCI more than 20 years ago. How have you coped over the years?
A. I don’t sweat the small stuff. You control your feelings. You can go south by thinking negatively, or go north and be positive. As long as I keep my mind occupied, I don’t worry about other stuff. Life is too short to be worrying about it to the end. I can have a good time and be happy, or be miserable to the end. I make the choices, and why would I want to be miserable? The people who are advocates, they tend to be better off. It’s kind of a therapy, because you’re talking about it, but in a positive way. You’re open about it and answering questions to people and learning to deal with it better.
Q. What is your personal strategy? What kind of lifestyle behaviors do you practice? What else do you do?
A. I try to eat right. I exercise. Not that I believe those things really help. I think they’re good for all around health, not specifically for dementia. I don’t buy those things. I used to walk up 11 flights of stairs at work all the time. I was always healthy, and thin. I try not to get stressed out. I’m on medication that helps with depression and anxiety. I was one who was pretty much against drugs. I was having trouble with sounds because they were too loud and annoying to me. The doctor convinced me to try medication, and I’ve got to tell you, it’s the best thing I ever did. With this disease, you’re going to have depression. It goes with the disease. If you can reduce one symptom, why not?
Q. People seem to have a lot of challenges dealing with the health care system, and their doctors. They feel like they’re largely on their own, and they have to be advocates for themselves and be prepared to fight the system. Has that been your experience?
A. I actually wrote a book called “From the Corner Office to Alzheimer’s.” I went to great lengths to talk about the medical system. It’s sad. The medical system is terrible. They have no knowledge how to deal with people with dementia symptoms. The Joint Commission creates mandatory training for various things. They have mandatory training (for care of people with dementia) in assisted living facilities, but don’t require it for hospitals. That needs to change. I’ve been pushing for things like that.
Q. If people are interested in getting more involved in the kind of advocacy you do, how can they help make a difference?
A. First of all, people need to talk about this disease to eliminate the stigma. It’s like cancer used to be. The people who have it should not be ashamed about it, and talk about it openly.
Also, people need to contact their government representatives. Several times a year. If you only do it once, that doesn’t work. The more times you knock, the more likely you are to make some progress. The level of funding is the key. Three or four years ago, we were at $500 million. We are now at $1.4 billion; we may be up to $1.8 billion. At this point, a lot more is needed. If we get more funding, we’ll be able to make more progress. Look at what they’d did with HIV. In five years, they figured it out because they threw so much money at it. To me, it makes no sense why they wouldn’t. It’s costing the government $259 billion in Medicaid and Medicare just to cover people with dementia. If they could come up with something that would delay it five years, think of how much it could save.
The third thing is to push for change in the health system. Have more civil rights for people living with this. The more people hide it, the less chance of knocking down the sigma. They did nothing wrong and they shouldn’t feel they did something wrong or be ashamed to hide it. The best thing for me was when I came out and started talking about it. It was a relief.
Interested in learning more about Michael Ellenbogen and his advocacy work? Visit his Facebook page, called The Michael Ellenbogen Movement