Dementia & Alzheimer’s Self-Advocacy, with Michael Ellenbogen | EDB 222
Michael Ellenbogen discusses the importance of Alzheimer’s and dementia advocacy.
(29 minutes) In this episode, Harold Reitman, M.D. speaks with Michael Ellenbogen, author and Alzheimer’s and dementia self-advocate. Michael started having early signs at the age of 39, and spent over a decade to receive a diagnosis. Since then he has become a celebrated and tireless self-advocate seeking a cure, including having a letter for Alzheimer’s advocacy accepted into Congressional record.
For more about Michael and his mission, visit: Facebook.com/MichaelEllenbogenMovement
And look for his book “From the Corner Office to Alzheimer’s” on Amazon here: https://goo.gl/XEY9x4
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Welcoming back Michael Ellenbogen
DR HACKIE REITMAN (HR): Hi, I’m Dr. Hackie Reitman, welcome to another episode of “Exploring Different Brains.” And today we’re so fortunate to have returning to us, our friend, Michael Ellenbogen, one of the pioneers and self-advocates for Alzheimer’s and dementia. Michael, welcome back to different brains.
MICHAEL ELLENBOGEN (ME): Well, thank you so much for having me back, it’s great to see you again.
HR: Boy, time flies, and we were just talking before we went on the air how in these Corona Virus times, time kind of blends right in and boy, my brain’s getting a little fuzzy.
ME: I think people are getting to see what my world’s like. I mean, people are expecting to know that they taught it all but you know when you’re in a home all the time you don’t know all that.
HR: [Laughter] So it’s been a while since you testified before Congress on Alzheimer’s.
HR: Now you, first got symptoms around 38, but wasn’t diagnosed until around age 49, something like that.
HR: Tell us how it’s been the last couple of years since you last spoke.
ME: Actually, I…It’s probably…I don’t remember how long it’s been, but I’m probably gonna shock you because I think it’s been more than three years or four since you and I spoken, but I’d say about three years ago I was fortunate enough to get into a study that, as people may be aware, they have this Ameloid PET Scanner, and they also have something new that’s called a TAU PET Scan, and unfortunately nobody could afford these things because they’re so expensive, they’re like $10,000 a piece, and I was fortunate enough to get into an Eli Willies Study that tested for the Ameloid PET Scan. Well, to my surprise, after 10 years of diagnosis, they were able to find out that I tested negative for the Ameloid, which means, most likely, I do not have Alzheimer’s. So, what does that mean? Well, when I was originally diagnosed, they thought I might have semantic dementia, which falls under the FTD category, or they were leaning toward Alzheimer’s. So they chose to go down the path of Alzheimer’s. Well now, it’s put me pack on the FTD category. Do I believe they’re right? Well, to be honest with you, I don’t think so. Because I don’t think anybody still knows yet. They’re still trying to figure out the science, and I’m not trying to get into the TAF Study. I can get that test, in a clinical trial. Now I’ve been working on doing that for the next couple weeks and I hope to do that and we’ll see where that takes me. But, if there’s one thing I’ve learned over the years, that no matter what your doctor thinks you got, he’s probably wrong.
ME: Because, I learned from, I can’t remember how to say, a person who studies the brain afterwards, I can’t remember the word they’re called. But anyway, she had said that 60% other people, that had biopsies on had three types of dementia after they passed. Their record had indicated they only had one type, it most likely was Alzheimer’s, but it was a mixed, thing. So, I guess what I’m trying to say is you can’t worry about what the hell you have because they’re probably wrong anyway because they’re only guessing. And I guess it is what it is. And I kinda hate that phrase, but I don’t worry about it anymore.
HR: Well, it’s one of the good things about the newer technology because up til then like when I was up at Boston University, you could only study these brains after the patient was deceased and the pathologist was the one who had the final say on things. Now with these newer scans their getting a little more prospective. So putting all the terminology aside, ok? What we like to focus on here at different brains is give us some of the tools that you used that had helped you along your journey.
ME: Well I gotta tell you, for me, is not thinking that I have this disease. And what I mean by that is I don’t focus on it other then when I first introduce myself to somebody, I let them know that. But after that, it doesn’t matter because they know and no matter what I do or what I say, hopefully, because I already told them they’re going to treat me as normal as possible, knowing of the issues that I have. So, to me, just get it out of the way as soon as possible. You know, I’ve been selling a lot of things in my home and I’ve got these people coming in. First guy I have I say hey I don’t know how to do the math you’re gonna have to do the math, you’re going to have to help me here. And it’s like people are very easygoing, and they help you, they try to make sure you understand how you’re counting and how you’re getting there. And I think there’s a lot of good people out there. Now I will say, you gotta watch out because you’re going to expose yourself to some of the crooks out there. But overall, most people out in society you can count on to help you out and they’ll go out of their way to help you.
HR: What is some of the advice, what are some of the tools you might say I think this has been good for my brain, like exercise, nutrition. What’s been your personal experience?
ME: They’re probably gonna shoot me for this, but—
HR: No we wanna hear from you.
ME: I started exercising a lot about five years ago and the only reason I was really doing that is because I was hoping to lose some weight. Well, after working out, an hour a day, probably about five days a week, I wasn’t losing any weight. In fact, I was losing less weight. [Laughs] Which made no sense. And it didn’t really help me with my dementia in any way. It didn’t help me at all. Because you know they tell you today to do all this exercise and to be honest with you, I used to walk up eleven flights of stairs every day when I used to work. So it wasn’t a lack of exercise issue that I got dementia. So the bottom line is exercise doesn’t work for me. What works for me is a book I read a long, long time ago, and I might have said this for you in the first interview I had. It was a book that said Don’t Sweat the Small Stuff. And they had two different versions of it. I guess a business version and a version for everyday living. That stuck with me my whole life because you cannot worry about the things you cannot change. I mean, you can; but it’s just gonna aggravate the hell out of you and it’s not gonna accomplish anything. So you might as well accept it for what it is and deal with it at that level. And I try to make life the best I possibly can every day no matter what and I just don’t worry about my errors anymore because especially now more than ever because what are you going to say, Okay you screwed up a word or whatever, Ok, I’ve got Alzheimer’s what the hell do you want? It doesn’t matter. I’m going to be the best that I can and if it’s not what you hope me to be, I’m sorry. You know, this is just who I am today.
HR: Now who do you live with?
ME: I live with my wife primarily, however because it is COVID, I’ve been very fortunate, you know because some people say COVID’s been a good thing and a bad thing. Well for me, it’s been good, because my daughter, who lived in New York, she came back and lived home since March. And she’s been here, she’s actually going back in September, and I’m kind of glad to get rid of her after a while [Laughs]. But it’s been great because we’ve gotten to see her every day now.
HR: Now that’s great. Now what advice would you have for families where someone in the family has call it Alzheimer’s, call it dementia, call it, what do you like to call it by the way?
ME: I prefer to call it dementia. I know a lot of people don’t live dementia because they don’t like the word, but it’s not the word, it’s what people thing about dementia that’s the problem. So we need to educate people what it means to have dementia, what it is. I don’t like the word “demented,” but I understand in the clinical aspect of it, they may need to use it as a doctor, so long as that doctor isn’t addressing me directly in any way, that’s fine. But I think we all get lost in all these words that we use and people say it’s the wrong word, don’t use it don’t call me this. I think it’s all a matter of education and we need to educate people what the word really means and to me, I’m okay with that.
HR: Ok, so what advice would you have for the families of someone with dementia?
ME: Well, one you thing you already should know, you know one person with dementia, you know one person. They’re all different. And that’s probably a hard answer to give that’s going to satisfy everybody, but…
HR: Well let me interrupt you to say this, one of the reasons I started DifferentBrains.org is because my daughter who has Asperger’s and High-Functioning Autism, but we didn’t know that until she graduated Georgia Tech with a discrete math degree because 23 brain tumors, two major brain surgeries, seizure disorder, but she’s the one who told me it’s on the cover of my book Aspertools, no two brains are alike, they’re like snowflakes.
HR: You met one Aspie, you met one person with dementia you met one person with dementia. I think in the larger sense that’s what we’re encouraging people to do. Tune in on everybody’s brain, you don’t have to be a brain surgeon to do that. Tune in, that’s what a salesman does, that’s what anyone who is sharp does, and your first lesson for the families, no matter what you’re calling it is tune in on what are the differences in that person’s brain, and how is their family member’s brain working a little bit differently? Regardless if related.
ME: I call it being a detective because a good detective will try to figure out what is going on with the person and figure out how to possibly fix the situation, not that all situations can be fixed, but if you can figure out why somebody is doing something, then that hopefully makes sense, and the only way you can understand things is by asking questions, and I think that’s the biggest problem that happens in all families; they just see what’s happening with the person and don’t spend the time with the person to ask them why they’re doing various things or why is this happening or how this is effecting you? How would you like me to handle situations like this? They don’t have that dialogue. They just have the concept in their own mind of what they want to impose or what they think they should do. And that’s wrong because they will never learn. And its so sad, I see all these caregivers talk every day about how they try to resolve all these things with their loved ones because they can’t do this anymore, or that, and they’re asking all these caregivers for additional help but not asking the simple person that’s right there that can probably give them the answer. It’s like they don’t want to talk to them, it’s like why? They’re your loved one, you probably know them best and you know how to get that from them and if you ask it the wrong way you ask it a different way if they don’t understand. It’s a way to communicate and people just give up and they don’t do that. And that, in my opinion, is the biggest problem with caregivers is lack of communication.
HR: Well that’s great advice. That’s great advice. You know, it always amazes me whenever we talk about any sort of neurodiversity. It’s so true for all of us on everything, with so-called “neurotypicals,” it’s just when you’re dealing with neurodiversity it’s on steroids. I mean, what a novel idea, ask the person. Duh! You know.
ME: And I should add, I should add one thing
HR: Go ahead.
ME: The person can’t always speak, you know. And some people after a while get to a point where they need a lot more encouragement, a lot more help to be able to communicate, sometimes they just can’t express words anymore. Sometimes you have to be the one to fill in with things by using simplified words and small, little sentences and give examples and let them come back with one or two, with one question and let them maybe by raising a finger, maybe by flickering their eyes, but there’s a way to still communicate if you give that person some time, it may take us longer than two minutes to get a response because their brains are slow, they don’t process as quick. So just ask your question, shut your mouth, and just listen and do this in quietness and I bet a lot of people will be very surprised that all these people who they thought couldn’t communicate will communicate in some form or fashion.
HR: Slow processing time is something we all forget about. Take us back in time, if you can, to the moment that you knew I gotta get some help, something’s going on here.
ME: I don’t remember exactly but it’s around the age of 39, I was a high-level manager for a Fortune 500 Company, I had staff reporting to me and all, and I managed networks and data centers for my company and I was the guy who was the go-to guy for the entire company. I mean people came to me for all kind of advice [Laughs] and I mean financial advice and all kinds of advice. I was the kind of know-it-all guy there. And I realized in myself that I was kind of struggling to come up with acronyms in my field, four-digit extension numbers that I used to know. I was struggling with my direct reports first names, I was struggling for their names. So I initially said something to people and they said, “oh, that’s just getting old and all” and that may be true with getting older, things kind of slip our minds and all, but I think you have to realize the frequency with how often these things happen and for me it was happening a little too frequently. So that’s when I reached out to try and get some help, but unfortunately when you’re my age, sadly they don’t want to point out you have dementia and it took almost another ten years to get a diagnosis.
HR: Did they give you any provisional diagnosis or did they just say don’t worry about it?
ME: Yeah, they said I was stressed and depressed. And I was not that. They tried to put me on drugs. The drugs made me too happy
ME: But they didn’t do anything to improve my memory in any way. But people at my work did realize when I was on the drugs I was a happier person, you know, I was more calm, but it didn’t do anything for my memory.
HR: Can you tell our audience about your advocacy and how you got into the Congressional record and what pathways you took that might inspire them to do similar things.
ME: Well I gotta tell you, for me, I was a very successful person no matter what I did in life. And when I had a staff to work for that was terrible for me because I was a workaholic. I had to do something, but a lot of the things I loved to do I couldn’t do because of my dementia, even a lot of my hobbies. So I kind of re-invented myself and early on when I started doing the advocacy I was told to stop doing it because I was putting so much pressure on myself that I found myself crying at times because I couldn’t do it. But I found the more and more I pushed on and it got a little bit easier but it took a long time, and when I say a long time I gotta tell you it probably took me six months to three quarters of a year before I felt able enough to be able to do this. And I got to this point where I was able to do this seven days a week twelve to fourteen hours a day by a year and I got to the point where I got really good at it and if I had listened to all the people around me, psychologists around me people at the Alzheimer’s Association, people who said don’t push yourself, don’t push yourself, this is not good for you, well let me tell you, it’s the best damn thing I could have done because I was able to accomplish things that no other person with dementia was able to accomplish. I mean I was able to reach the World Health Organization in Geneva to speak to 83 Ambassadors of the World and I was the only person with dementia who wasn’t part of organization who was able to have an ear and be able to speak two days there among all the ambassadors of the world. I mean, you tell me how a person who’s normal can accomplish what I did, I know I have three Congressional records, I testified in from of government, I have done so many things, I got AARP to do what they’re now doing for dementia.
I mean if it wasn’t for me today AARP wouldn’t be supporting dementia, I mean the things I’ve been able to accomplish to connect to all the CEOs of the world around the advocacy and to bring other people on board to be doing what I started doing to be like what you said, I’m one of the pioneers. I’m not the pioneer, there are probably three people ahead of me that were pioneers, but I was probably one of the most successful in my ways of accomplishing things and I’ve gotten more people to come on board and nowadays I’m starting to slow down. I’m not the person I was anymore, but I hope people will step up to the plate like I did and continue after I’m done, because that’s what it’s going to take to find a cure for this and to get the funding that we need and to get the government to do what they do and so many people have the attitude, well I said it once they didn’t hear me, now I’m walking away from it, well you’re in the wrong business, because in this business as you already know you gotta keep saying it over and over and over and sound like a broken record and I—that was never me, I hated doing that, but it’s a different business, it’s a different world and every time Congress changes you’ve got to start all over again, people don’t know that you don’t get to pick up where you left off, you’ve got to start all over again and it’s like oh, terrible, but hey, that’s the world we live in and if you want to bring change, that’s what you have to do. And you can’t let anything stand in your way, if someone in front of you says it can’t be done, well, you know what? I go around them and find somebody else and I’ve always done that all my life and that’s how I’ve won all these cases against the government to make things better for people with dementia. I don’t accept no, I find somebody that can help me. I’ve got a great team, Arnold and Porter, lawyers who are willing to stand by me and do all this work to help me out through all these situations and they stand by people with dementia and help people with dementia and anytime I need they’re help they’re always willing to help.
HR: Wow, oh wow, you’re full of piss and vinegar I’ll tell you that.
ME: [Laughs] You have to be.
HR: Michael, what is the single biggest thing society does not realize about Alzheimer’s and dementia?
ME: That’s a very easy answer that it impacts everybody in some way or fashion. Whether it’s financially, or it’s somebody that you know.
HR: What, if anything, have we no covered today that you would like to cover.
ME: Well the one thing I encourage people to do is to step up to the plate, no matter how small it may be, to do advocacy. You know, advocacy doesn’t mean you need to take hours and hours of your time. I mean, it can start with just a simple letter that you write and just change the name of that title and send it to your Congressmen, your Senators, you know, your state officials, and send it four times a year. It can be the same damn letter just change a couple things in it and just re-word it. That makes such a huge impact that people just don’t realize. But it can start with something so simple, and you know, if we all did that we probably would not be having this discussion today. We would have a solution. We start to get something and then we run into something like COVID and the outbreak we had a couple years ago, I can’t remember that disease, it’s from Africa.
ME: Right, Ebola! Yeah.
ME: We already give billions and billions whenever one of these things come up. You ask that for dementia, and that kills just as many damn people, and what, what do you do? It’s like whenever we get a pot of money to go it goes to something else.
HR: Good advice. Michael Ellenbogen, a true champion. What’s the biggest piece of advice you have for families and those who might be seeing in themselves early signs of dementia? What’s the best advice you could give them?
ME: Do not delay going to get a diagnosis. Some people are so afraid of getting diagnosis because it might be dementia. Well, it’s not always dementia! There are many issues that can mimic the dementia, all kinds of issues, so it’s very important to go to the doctor, get treated, and the good news is, if it is dementia you can get put on some kind of drugs that might help you, cognitively, do a little better. And the sooner you’re on these drugs the better off you are, so no matter how you look at it. You will be better off. You know you didn’t do anything wrong if you get this disease. You see some people are so afraid to talk about it. You know, it’s just like cancer or any other disease. You did nothing wrong to get it. We did fine in our lives. We don’t even know what causes this disease.
ME: I mean, let me just correct myself on that, we are starting to know more, a little bit. For those people who played football, for those people who played soccer, I don’t know if their lives are worth playing those games, because I would never let my kids play those games, because no money is worth the outcome of destroying your brain.
HR: You know my twenty-six pro-fights didn’t help my brain either.
ME: But you didn’t know then. You didn’t know those things, now we’re starting to understand that.
HR: You bring up an interesting point because when I started fighting, I got a lot of publicity, because it was a good story, an orthopedic surgeon, a pro-fighter, donating purses to children’s charities. I remember all the shows, Good Morning America, Firestone, all the shows. I remember one of their questions was always, “aren’t you worried about hurting your hands, you’re a surgeon?” And I would say “how come nobody asks me about my head?” But you’re right, doc, you’re right, we didn’t know back then. You know, now, many years later we do know, although, I don’t know who said it, was it Mark Twain, or whomever, “there is no process—no extent-to man will not go to avoid the process of thinking.” We never thought getting hit in the head wasn’t good for you, like how you can go to McDonald’s eat ten Big Macs and wonder if that’s good for you, you know? I don’t know. Is there anything we here at DifferentBrains.org with our wonderful neurodivergent interns and team can do to help you and your wonderful goals?
ME: You know, one of my biggest goals, and I have big ambitions on my LinkedIn, my goal is to meet with the President of the United States. For seven or eight years now, I believe, and I have no doubts, that if I can do that, I can change the world again forever for people with dementia, and I don’t mean the United States, I mean the world.
HR: Well, Michael Ellenbogen, the champion of Alzheimer’s and advocate of our dreams, thank you so much for being here on exploring different brains.
ME: Thank you so much, I hope we can do this the same amount of time again, and hopefully I’ll still be speaking, hopefully. [Laughs]