Alzheimer’s at 40, with Michael Ellenbogen | EDB 33


In this episode, Harold Reitman, M.D. speaks with Michael Ellenbogen, author and Alzheimer’s advocate. Michael discusses his battle with Alzheimer’s, his early signs at the age of 39, and the decade-long odyssey of getting a diagnosis.

For more about Michael and his mission, visit: MichaelEllenbogenMovement.com

And look for his book From the Corner Office to Alzheimer’s on Amazon here: https://goo.gl/XEY9x4

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HACKIE REITMAN, M.D. (HR):

Hi I’m Dr. Hackie Reitman, welcome to another episode of Exploring Different Brains. Today we’re going to be talking with Michael Ellenbogen, who at the age of 49 was diagnosed with Alzheimer’s but what we’re gonna find out is that he was noticing signs earlier than that, welcome Michael to Exploring Different Brains!

MICHAEL ELLENBOGEN (ME):

Thank you for having me.

HR:

Alrighty, so this is going to be a great tale it’s going to be very instructive, and I want to learn from it myself, because I think you and I are going to be collaborating on some stuff, because I’m seeing the early signs with me. Go ahead and tell us your story. Introduce yourself to our audience here.

ME:

Well my name is Michael Ellenbogen, I was I guess diagnosed with Alzheimer’s at age 49, but that was after struggling for almost ten years, trying to get a diagnosis. I was a high level manager working for a bank and I realized early on, that I was having difficulties remembering extension numbers, acronyms related to my field, I was even having trouble remembering my direct reports names at times so I knew something was wrong. Unfortunately, when you’re young and at that time, I was in my early 40s, all they kept telling me was I was stressed, I was depressed and I did have a very stressful job, but for me it was not stressful. I actually enjoyed that kind of stress in what I was doing. So it really took a lot of working with doctors and being very patient to finally getting a diagnosis. It wasn’t until almost eight or nine years later that I was finally able to get a diagnosis.

HR:

So let me see if I got this straight. So now you’re roughly around 39 years old, you start to notice different things, you start going to doctors and what were some of the labels they were putting on you?

ME:

What I quickly realized is once one doctor puts a label in your chart, that they think you’re stressed, it doesn’t matter anymore what any other doctor says because the first thing you do is look at your records and if you see what one doctor says and immediately in their mind, they go by what the conclusion of the other doctor did, they no longer want to make their own conclusion.

HR:

Well it brings up a very interesting principle which is what I call the theory of mutual of exclusivity. I tell some of our interns who work here, I tell the kids at the Boys and Girls Club, “don’t buy society’s big lie that things are mutually exclusive and you know, stress — but listen on the book I wrote about Asperger’s, Autism and Neurodiversity, the first chapter is anxiety, and guess what, it rules all of us, so you don’t have to have any diagnoses for that. We’re all anxious. We’re all under stress, okay? So the first thing we learn from this is, is to open your mind that things don’t occur in isolation, and if you want to use fancy terms, you could say co-morbidities, but we don’t need to think like that. So they’re telling you you have stress and you’re bringing up the point well taken that once a doctor puts a diagnosis in your chart, it’s there. Take us from there what happened?

ME:

Well what happened was the first round of doctors lasted about three years and that was in my early 40s, and what happened was I ended up getting terminated from my job and I went to another job and I realized I couldn’t learn any more. The job I went to, I had about 30 pages of notes and I still relied on those notes four years later and I’m a very intelligent person, I mean I never used to have a day reminder or anything like that so for me this was just not the norm. So I decided that I was going to start all over again because it was really coming to a point that I was just overwhelmed every day I was so stressed out just from trying to keep up with doing the simple tasks, so I decided I was going to start all over again with all new doctors, I wasn’t going to share with the doctors of my previous diagnosis and when I did this, I went to psychologists, psychiatrists all at the same time and one of the psychiatrists came back and said, “look I don’t see anything wrong with you, but have you thought of Alzheimer’s, because that’s what it seems to me it could be and he told this to my wife who happens to be a medical person also, so she did a little bit more research into it and when my neurologist came back this time and said, “well we don’t see anything wrong with the MRIs or anything, she suggested, “how about we do a PET Scan?” So it wasn’t until the PET Scan came back and that came back conclusive of Alzheimer’s and from that point on, once I had that label, everybody all of a sudden it’s like, “oh yeah it’s some form of dementia and I ended up going to all kind of doctors and they were all now going down the avenue that I had some type of dementia, most likely Alzheimer’s and I was very fortunate to be able to be into a study at NIH where they thought I might have had semantic dementia and after all of their testing there, they came back also conclusive with Alzheimer’s so ever since then I’ve been lucky that I’ve been in medical trials and other things everybody just constantly says that it is Alzheimer’s.

HR:

Very interesting and now have you, we’re talking now, how have you been mainstreaming this information? How have you been getting the word out on your experience?

ME:

Well I originally started by reaching out to the Alzheimer’s association and I thought I could put my good skills to use there to try to advocate and to be very honest with you, I was very disappointed early on. I belonged to a group that they had formed locally it was the ESAG group and it was a bunch of other young people also living with some form of dementia but what I realized early on was, they really weren’t trying to make awareness for people living with dementia. They were really just trying to make us feel good. Personally, I’m a person that looks at my results: what am I getting accomplished? There was one issue I saw that was happening here locally at a major university that they weren’t treating people with dementia the proper way, and when I took it to the Alzheimer’s Association, they didn’t want to address the situation, they said, “well these people are giving us money so we really don’t want to go after them in any way and that’s when I realized that I had to step outside of that box and reinvent myself and to become an advocate for people living with dementia, because the people who I thought were supposed to be really supporting people with dementia weren’t really doing it, because of course they were getting money from these institutions, so with that, I started to try to create a LinkedIn network which now today has 6,800 connections and these are all people all over the world who hopefully will be able to help bring change to this, you’re one of them of course and I’ve been able to be very successful of being on radio and television all because of this. I actually wrote a book I guess a couple of years ago, it’s called “From the Corner Office to Alzheimer’s” and I really wanted to expand on that book, but unfortunately, my skills are no longer there capable of doing it, in fact my wife read what I wrote and she told me to give it up, because my writing was no longer good.

HR:

Well let’s tell our audience where they can get ahold of that book you already wrote?

ME:

Well that book is available on Amazon, or other book stores, they can order it. Again it’s called “From the Corner Office to Alzheimer’s.”

HR: That’s great, okay, by Michael Ellenbogen so we’re going to make sure that we put that graphic up on this video when it gets edited so people will know where to go for that.

ME:

The reason I wrote that book, it was really to educate people about the difficulties that I had and the problems with the health system. It was my hope that people would learn from that and hopefully they would change going forward for other people and I also wanted people like myself to understand that, “hey if you run into a bad doctor, find another one,” because that’s the problem that I really ran into and I have regrets that I didn’t move on to another doctor much sooner and I went to one of the biggest doctors here in the United States and sadly to say, all because you’re a big doctor doesn’t mean you know it all.

HR:

Well as an M.D. I can say that I would hesitate to use the word “bad doctor” rather, I would put it like this: “when it comes to neurodiversity, which is Alzheimer’s as a neurodiversity just as autism, Asperger’s, PTSD, dyslexia, you name it, where we have to stop thinking that one size fits all, but it’s not the doctor’s fault that what, they don’t get any training. They get very little training. I’m very proud that I gave the first ever neurodiversity lectures to the American Academy of Orthopedic Surgeons, it’s not on their radar. I also gave a talk through Skype to the 3rd year medical school class at Boston University where they’re starting to get training in it, and it’s not really big on the radar screen of the doctors and we have to get it big, because the numbers are big and the other thing I want to emphasize is that there are real tools that you can use to affect the practical course of everything and you are a great example of that as well. And of course if you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s, cause they’re not gonna be alike. Now what other stuff have you done besides the book, the name of the book is “From the Corner Office to Alzheimer’s” right?

ME:

Correct.

HR:

Okay, have you done anything else that our audience can find about you?

ME:

Well I did share a document with you, I think it was like 50 some pages, it was a vision that I had created with a number of other people living with dementia on what I think needs to happen in the United States and actually the world. It’s actually been shared with many world leaders already, that’s something I’m willing to share with anybody if they reach out to me, I’m more than happy to share a free copy with them. I’ve written things in Congressional record, I’m just getting ready to now put my third Congressional record which will be read on September 21st on World Alzheimer’s Day, and I’m hoping to get the attention of politicians to do more for dementia. I think we’re at a tipping point today, they’re finally starting to hear us, and hopefully we will be able to get the money and the funds that are necessary for this disease, because to be honest with you, it’s been discrimination up until now. They haven’t really been funding this disease. You look at HIV, you look at cancer and the funds that they get, and we get a minimal amount of money.

HR:

Now, is there one umbrella organization for your style, your advocacy, is there a one umbrella, or there’s not yet, or it’s just you personally with the 6,000 connections on LinkedIn?

ME:

I actually know every single CEO around the world in this particual arena, the one person that I have the highest respect for “Us Against Alzheimer’s.” I believe they are doing some wonderful things, but at the same time, they all have their little niche. The Alzheimer’s Association also does some very good things. They also do some very terrible things.

HR:

So you’re like me, you want to get everyone to play nicely in the sandbox.

ME:

Exactly.

HR:

And that is what’s getting me about Neurodiversity in general. It’s not only that all the different neurodiversities are not talking to each other, it’s that within each one, you got what you just described in the Alzheimer’s/Dementia. You got this island over here and this island over here and this one’s doing that good, and this one’s doing that good, this one doesn’t like that one and it’s the same thing in the autism community where the vaccine people don’t want to talk to the genetics people, don’t want to talk to the gut-brain people, but what I’m finding is, precisely because of my ignorance, and I have a fresh set of eyeballs for this is, “Wait a minute! Some of the research over here for autism on the gut-brain also works for people with dementia, okay? Now we got to get them talking to each other, because the importance of proper diet and nutrition, activity, and exercise, has been shown again in study after study to help all of the above, especially dementia and Alzheimer’s, I might add parenthetically. Now let me just segway that into: what has your experience been with physical exercise and diet related to the process in you and your brain?

ME:

I have to tell you. I don’t like when people say that exercise and all this helps people with dementia, because I believe exercise and all helps everybody, not just people specifically with dementia.

HR:

Let me interrupt you. That’s the other amazing thing I found in writing the Aspertools book. I had my friend Dr. Lori Butts who’s president of Florida Psychological Association, and I have her on film saying in slightly different words than these but, “I told Hackie he was a moron, because he thought he was just writing these principles and tools for people with Asperger’s and autism, and it’s not, it’s for everybody, it’s for relationships, it’s about parenting”. And so, isn’t that a genius thing to say, “oh it’s good for you to have proper diet and nutrition and activity if you have Alzheimer’s,” and Michael Ellenbogen says, “yeah Hackie, it’s good for everybody!” Why do you think that’s a revelation, because people don’t do it? They’d rather take a magic pill, than to do the common sense tools that you know so much about?

ME:

Well I have to tell you for me, I’m actually fatter now than I was, not that I’m fat, but I used to walk eleven flights of stairs every single day at my job. I mean, I didn’t take the elevator.

HR:

So you had OCD also?

ME:

No I don’t think so. But I mean I was always very active and I ate well. I don’t think that was one of my reasons for getting dementia, or Alzheimer’s, but again, I’m sure some people may be affected by that, but for me, that definitely didn’t play a roll, I mean I still, today, I use an elliptical machine, I do that a couple of times a week. I do try to stay active, even though I’m sitting helpless at times looking at my computer so I do try to do something to keep me active. I don’t think that’s the solution though that will help in any way to slow it down, the process for me. We need to get some kind of cure, or at least slow it down in the meantime. I mean I try many different things that most people don’t use, I don’t know if they’re working or not, but you have try something.

HR:

Can you tell our audience here at Different Brains, what tools have you found that do make a difference, that you, Michael Ellenbogen will say, “look even though I haven’t read about this in any literature, I’ll tell you some good tools, that someone who is getting dementia can use that are at least helpful in some way?

ME:

Well I have to tell you for me, one of the best tools out there is a GPS. I mean I don’t even know how somebody with Alzheimer’s would have survived a couple of years ago without GPS? I mean I used to be a person that could go from point A to B without a map, it was all, I just had this great sense of direction. Today I have trouble getting to my own mother-in-law’s house. But with GPS, I can go anywhere, I can go to Florida from here! I mean it’s fabulous and it’s something that’s so over-looked and that’s GPS driving. Well, some people who have dementia they’re afraid they can’t go anywhere anymore because they’re going to get lost. Well they make tools today that you can watch a GPS watch, and they can track you wherever you’re going or for that matter, your iPhone that you have. So there’s such great things out there today that people don’t realize that can help us to continue. I mean nobody should be fearful that they can’t continue to still live life to the fullest, because they have to be stuck at their house. There’s tools out there to help us and I think people need to realize that. To me, I use my Outlook on my computer. It’s my brains. It keeps track of every appointment that I have. Without it, I wouldn’t be able to have this meeting with you today. And it’s like such a wonderful thing to keep me on track every day that reminds me all the little tasks that I need to do each day.

HR:

Well that’s great because I do that too. And again you’re describing things that can work for all of us, but which are essential. Now, if I’m getting dementia and if I’m getting Alzheimer’s, where can I read about all of these tools that you know about, that I might not now about? Maybe we should write an Aspertools for Alzheimer’s, just write down a bunch of tools.

ME:

Sadly to say, I don’t think there’s anybody out there who has put anything in place that I’m aware of so far, but I did put in this document that I told you about, I actually have a good I think something like 30 or 40 different ideas on how it helped me, different tools that I came up with along the way that has helped me in my life to perform better on a daily basis. And again I’m willing to share that with anybody who reaches out to me for free. I think we all create different ways to get by on a daily basis. I think anybody has some form of Alzheimer’s/Dementia creates their own mechanisms to survive —

HR:

Well I would dispute that with you because in other words, they have to have the necessary pathways to come up with that. In other words, it’s vary degrees. I’m sure it’s like a bell-shaped curve, you know what I mean? And it will be very helpful if we can get the word out to — I’m going to really take a look at that 50-page document and see what’s in there, because it’s really helpful. You see, one of the things I notice that happens is that when people such as yourself who pay their dues, who become experts, and know all of this stuff like the back of their hand, they forget that everybody else like me is just kind of ignorant. Doesn’t mean we’re stupid, it just means we don’t know about this stuff. You know and it’s perfectly logical to you the way it evolved and I mean this in a very positive way, that you’re a wealth of information and inspiration and knowledge, and look at the positive things you’re doing. So anything we can do here at Different Brains to help get your word out and get it out there, we’ll be very glad to do. Now do you have your own website?

ME:

I do its michaelellenbogenmovement.com.

HR:

Say it again, slower.

ME:

Michaelellenbogenmovement.com

HR:

Okay, so you’re saying this is a movement?

ME:

Well somebody created the website for me and that’s what they thought at the time so that’s how they named it.

HR:

How would you rate yourself the progression of the dementia or Alzheimer’s with you, or do you feel that you’re getting quote “better and better” or how do you measure it, okay? In other words, how do you feel that you’re doing and how are the doctors if possible, are measuring it?

ME:

Well for me, I’m in medical trials so I’m constantly being tested by the trial. Every I’d say 2-3 months; I’m doing some kind of neuropsychological testing to see where I’m at in reference to my baseline. Every time I do these tests, I see that I’ve declined a little bit. It’s frustrating on the one hand because you kind of see that you’re no longer capable of doing things that you’re able to do the last time you were there. For example, I used to be into drafting, and I could easily draw anything. Well in the last couple of times, I can no longer do a three dimensional square which is one of the tests they can give you. You got to remember, I did drafting, so for me that should be something very simple. I should be able to do that with my eyes closed. To see I’m no longer capable of doing things like that, it’s aggravating, but it’s things that they learn from me being in a clinical trial and I have to say, I’m one of the lucky ones with this disease because my progression is very slow compared to the other people I know who have Alzheimer’s and it could be because of all of the different things that I’m doing that’s delayed some of that. I don’t know. I mean we will never know why it’s been this. I mean just having dialogue with people such as yourself and high level people all the time, that’s keeping me at the top of my game. It’s always trying to keep me more engaged and evolved where a lot of people unfortunately because they get this diagnosis they kind of shut themselves away from society.

HR:

Withdrawal, instead of accelerating the other way.

ME:

Yes, and that leads to a decline, there’s no doubt in my mind. They decline so much quicker because of that.

HR:

Oh yeah and that’s also been shown study after study, isolation is not a good thing and the brain, you got to exercise it. Do you have any experience or thoughts about that company, Lumosity that I hear advertised? I don’t know anything about them with the brain games to try to help your brain?

ME:

Well I have to tell you, I believe if you’re a person who’s locked away and you do nothing whatsoever, I’m sure that probably does help a little bit, because it’s engaging them and it’s doing something for them. Personally for someone like me I don’t think it’ll make a difference, because I’m already kept engaged. I think part of the problem with those things, when they’re dealing with those people day in and day out trying to understand how they’re doing in those games, that and interaction with them is helping those people and that’s why those people are showing better results. I don’t think it’s the actual games, I think that interaction that they have with those people that’s having them improve. So I have a different theory on that, but then again, I’m a nobody, I’m not a person who understands all of that.

HR:

Yeah but you are nobody, that makes you somebody. Michael, that’s very interesting. You see, you’re looking at things with intellectual honesty as you look at all of them. Now where do you think somebody like me who is not nearly as knowledgeable as you in the area of Alzheimer’s and dementia. Where do you think someone like me is missing the big picture, to say, “well look Hackie, I think your kind of have a picture of this neurodiversity and you’re getting around it, but what you’re missing is “x” what would that “x” be? What would it be?

ME:

Well I think you’re taking the right first step here by reaching out to people such as myself, and that’s what I encourage other doctors to do. They need to get people like myself in a room and start asking the questions that they can’t ask their patients. There’s one thing I have learned is that doctors, even neurologists, they have this textbook idea of what a person with dementia is like. But they don’t ask the questions to find out is it really like that? And they’re afraid to do that with their patients, so they need to get in a room with five or six people like myself and start asking questions, because if they ask those questions, they will re-look at the books and change how those books are because I can assure you, people like myself can do so much more than what people tend to think we’re capable of doing. If we’re given the chance and the opportunity to treat us like a person still, I mean I went to Harvard and I spoke with the graduating class of neurologists there and they ask me these questions and they were shocked. They were shocked by the answers. I have spoken with people here at my local area, I was trying to educate doctors at the hospital here and I asked these questions, they said, “Mike, so what you’re saying is, I have to treat the person as a person again, rather than a patient.

HR:

What a novel idea!

ME:

This came from a doctor’s mouth who was a neurologist and I was like shocked that it took having dialogue with me on questions and answers that they finally came to that conclusion. I tell you, there’s a lot that can be learned if they ask the right questions and they don’t fear us and work with us.

HR:

Very well said, it’s very well said. Well as an M.D. I can tell you, the training has to change in such a direction in general, and there’s all kind of pressures. I used to commute from here in Fort Lauderdale, Florida, up to my alma mater Boston University, for 36 years or so, to give the first year anatomy lectures, the first kind of clinical lecture, which combined anatomy and clinicals because I’m an orthopedic surgeon. So the clinical aspects of anatomy and upper extremity anatomy was the one. One day I got this beautiful letter from the head of the Anatomy Department Mark Moss who’s a great guy, neuroscientist and heads the department. I called him up after I read this beautiful letter thanking me for everything I’ve done for so many years and I said, “Mark I didn’t realize until the end of the letter I had been fired. I said, you know hard it is to get fired when you’re not getting paid, it’s not easy.” But I did it.

But it’s interesting the way all of the syllabi or the way they have to teach is changing is similar to the way doctors have to practice. Now you go to a doctor, they have to be glued to their iPad, they have to be typing, instead of sitting and talking to you and making eye contact like we’re doing right now via the internet, and it’s the same way there because I would tell them things like, “listen to your patient, treat every patient like it’s your own family, and those kinds of comments and thoughts don’t increase your scores on the boards where you can get more grants for the school. So when they’re always compressing these courses, they’re cutting out what you’re talking about. Here’s a novel idea! Treat the patient like a human being, like someone in your own family, and that’s the litanies test.” How would I take care of Michael Ellenbogen if I’m a neurologist and he’s in my own family? What would I do? Where are the ends of the earth I would go to to find these different things? Instead of there is the diagnosis and there it is. So I want to salute you on all you’re doing to make a positive change, it doesn’t mean that doctors are bad or the organizations are bad or anything like that, it’s just means we want to look a little bit more through Michael Ellebogen’s prism to look at dementia and Alzheimer’s in a more positive, proactive, tool-based way. That’s what I’m getting out of this.

ME:

Yeah and you’re right. I have to tell you though, the way the medical system is today it is getting worse, just because of what you said. You know we’re so locked in to looking at that computer while we’re talking to the patient that they’re really going to miss, especially with people with dementia. That’s going to be a real problem I see going forward. But I also believe that we’re getting better at diagnosing things with some of the tools that are coming out today. I mean just with the amyloid PET Scans that exist today, unfortunately are not affordable for most people, today and insurance doesn’t cover those kinds of things, but the tools that they’re coming out with I think are going to help us. In fact, I think just the other day they came out with the first blood test that is 100% accuracy that people will be able to be diagnosed if they have Alzheimer’s, so I think we’re getting there. I think the tools are finally starting to come there, and I hope that those blood tests will be available to people in the next couple of years.

HR:

What would you say is the bell-shaped curve or whatever the breakdown is to the different severity like if we had — if the whole pie graph is dementia and Alzheimer’s, which percentage is like you at one end which appear to be the “elite” if I would say that, versus the other end that need 24/7 care and supervision if that’s a correct thing to even ask, I don’t know?

ME:

Well I think the problem is, I will be there at one point in time. I just happen to be in the early stages at this point. So I think we’re all going to go through that process. I just happen to be able to hold on a lot longer than the average person who is living with this disease. Again, it could be because of all the different things I’m doing like talking to you, and the drugs that I take. I mean I take a lot of different drugs, I take things like coconut oil, resveratrol, turmeric, these are all things that have been known to possibly be able to help.

HR:

Are they all in your 50-page document?

ME:

Well I don’t think that’s in there. I didn’t talk about those kind of things, because I’m a scientific person myself. I like to know the proof, and there’s no way of proving those things work at this point in time.

HR:

What is your educational background, Michael?

ME:

I have an associate’s degree in electronic technology, and I have a lot of little degrees that I have gotten over the years in reference to my particular field in telecommunications.

HR:

I think you might have a few Aspie traits also.

ME:

Well I don’t know about that. I can tell you, I was the type of person who was a perfectionist in everything I did. That has helped me in my life to accomplish things that most people were never able to accomplish.

HR:

Well that’s great. Now let’s just summarize for our audience where they can find you on the web, and your book, and anything else you would like to say. Give me a commercial here for Michael Ellenbogen.

ME:

Well it’s definitely been a pleasure to be here, Hackie, that I can tell you. I thank you for bringing awareness to this particular cause, which is so critical out there, but as far as people reaching out to me, they can reach out to me through my website, michaelellenbogenmovement.com and I’m more than happy to speak to anybody on this particular issue. I’m always looking to make new friends and to make awareness for this cause, which is so drastically needed and I’m always looking to get engaged more and new people to this arena, especially those who are living with this disease, because it’s their voice that’s most important and critical to changing the I guess view of what people think what people with dementia are like. The sad part is, unlike any other disease, there aren’t survivors for this particular cause. So we have to take our opportunity while we’re still capable of speaking to bring this awareness.

HR:

Very well said. I certainly appreciate that you’re using your brain and your being to make a positive difference to help others and to straighten out a few things. So, keep up the good work, and let us know anything we can do to be of help here at differentbrains.com.

ME:

Well thank you so much for having me today.

 

 

Author Image
Dr. Harold “Hackie” Reitman is the founder of DifferentBrains.com. He is an entrepreneur, philanthropist, children’s activist, retired orthopaedic surgeon, and a former professional heavyweight boxer. He who currently serves as the CEO of Fort Lauderdale, Fla.-based PCE Media, LLC, the multi-platform production company he founded in 2004. Dr. Reitman wrote, executive produced and co-directed the full-length independent film, “The Square Root of 2” (starring Darby Stanchfield of ABC’s “Scandal”), and is the author of the book “Aspertools: A Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders and Neurodiversity” from HCI Publishing. He also hosts the DifferentBrains.com interview show “Exploring Different Brains.”

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