Living with Dementia, with Michael Ellenbogen | EDB 286
Dementia self-advocate and author Michael Ellenbogen returns to discuss living with the disease, and his work raising awareness around the world.
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, visit his LinkedIn page.
And look for his book “From the Corner Office to Alzheimer’s” on Amazon here: https://goo.gl/XEY9x4
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FULL TRANSCRIPTION
DR HACKIE REITMAN (HR):
Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we have returning to us, the outspoken and eloquent self advocate spokesperson for dementia and Alzheimer’s. Michael Ellenbogen. Michael, welcome back to different brains.
MICHAEL ELLENBOGEN (ME):
Well, thank you so much for having me.
HR:
You were diagnosed in 2008, with Alzheimer’s at age 49. Okay, and you started having symptoms at 39. Tell us about your journey between 39 and getting diagnosed at 49.
ME:
Well, it was a pretty long process. But uh, I guess the first three years, I was struggling to get a diagnosis, I knew there was something wrong. And I went through all kinds of doctors, specialists. And, sadly to say, after three long years, they came back telling me that they thought I was stressed and depressed. So I kind of gave up working with the doctors out of frustration. And then, about seven years later, I was realizing that things are really getting to be bad, and I really had to do something else. So I started all over with new doctors. And this time, the doctors came back, identifying that I had either semantic dementia, or possibly Alzheimer’s. And after a long study at NIH, National Institutes of Health, it came back that it was most likely Alzheimer’s. However, fast forward 10 years after that. And that was a few years ago, because of the technology. And we’re getting better of identifying the different. Oh, I can’t think what they’re cold right now. But the things that they look for biomarkers, they’re getting better at biomarkers. And they came back because I was in a study and they felt that I did not have Alzheimer’s because I had an amyloid PET scan. And now they’re pushing more that it’s most likely semantic dementia, which falls under the FTD category. But again, I learned a couple years ago from some famous people, NIH that people who end up dying are passed away from this after they get a biopsy. They’re usually wrong on what they thought they had, because most people end up dying with three or four types of dementia. So you can’t just narrow it in on just one type of dimension, sadly to say.
HR:
Share with our audience, what some of your symptoms were and some of the tools you’ve used and made for yourself to help you get along.
ME:
Well, I guess there’s early symptoms for me, where I was starting to struggle with acronyms in my fields, which I knew very well, at the time, I was forgetting four digit extension numbers, forgetting my direct reports, first names. So that was my struggles, then, and it was so many other things. I mean, I was even having trouble using the fax machine and so many other things that, you know, we take for granted. And, you know, my original coping skills, and around that time was a lot of posted notes, and a lot of tight reminders, I even went out and bought an electronic device that I could carry in my pocket, they gave me all kinds of reminders and things like that. And I was able to keep my phone numbers at all in there. But it comes to a point that you end up having so many reminders that you need reminders for the reminders, because it’s just so overwhelming. And, you know, eventually it kind of catches up with yet and the only thing you can do is just tried to kind of simplify your life. Like for example, in the last couple of years, you know, I used to do all kinds of repairs on my motors, lawn mowers and tractors and things like that. And I couldn’t even figure out how to mix my gas anymore in there. I just couldn’t do those kinds of things. So again, I took another step, I got rid of all the guests and I went to electrical. So now the electrical, you just push a button and that’s all you have to worry about. So you got to constantly refine ways to make your life a little bit simpler and easier to try to continue to go on.
HR:
Tell us about your work and raising awareness for dementia and Alzheimer’s overseas.
ME:
Well, I’ve been very involved in trying to speak with people all over the world in reference to dementia. But I have focused a lot of my time actually probably about eight to almost 10 years now in Africa. And what kind of pointed me that way was About 10 years ago, I saw a woman who was locked up in chains completely naked. And she was just tied up laying there all day long in a, you know, heat blistering sun. And I found out that they referred to her as a witch. And when I found out the reason they refer to us, which is was because she had dementia. And they really didn’t have the understanding at that time of what it meant to be somebody with living with dementia. So I reached out to a great friend of mine, Mark Wartman, who, sadly to say has passed away this last year, he was in charge of ADI, Alzheimer’s Disease International, I referred him I said, Mark, you got to do something about this woman, this is crazy. I mean, you know, this woman is being neglected. And all this, and Mark went out of his way, and he got to the people in that village and educated people, and it changed everything. It changed everything for that one woman. So I realized, you know, there’s a lot of things we have to do here in the US and other parts of the world. And a cost live and money’s, you know, to do a lot of these things. But I thought to myself, you know, if I can just bring little change of education there, that doesn’t require any money, it doesn’t require anything other than people volunteering to give a little bit of their time there to educate others. So I try to reach out to the top people, you know, world health folks in Africa, throughout the whole continent. And they all say this is possible, you can’t do this, you know, it’s going to cost money, because we’re flyers, it costs for this. So I kind of struck out going down that route. And then I decided, You know what, I’m going to start reaching out to people of faith, oh, no matter what faith you’re in, but people have faith in the community within Africa. And I started doing that. And before you know it, I started getting these priests and all these other people of faith, reaching back out and we say, well, what can I do? How can I change? And I said, it’s very simple. We just need to educate people what dementia is, you know, I’m not trying to change, you know, they have witchdoctors all these things. I’m not trying to change their thought process, I just want to give them some education that they were not aware of what it meant to have dementia. What are some of the skills required to how to deal with people with dementia and explain to them that it’s a disease of the mind. And it slowly began by reaching out to these people through my LinkedIn portfolio, which I now have almost 21,000 people. And I remember people being on their cell phones, and they pull people together in our community outside, so I can talk to them on a cell phone, we talk, and then we just move the self around and allow me people to see who I was. And they would some some, in some cases, people had to translate, which was very, very difficult for me. Because they would have to translate the language so they could understand. And then he would take questions from those people that ask me questions, I finally ended up putting a two hour video together, which now I share with a lot of people over there in Africa. And I tell them, don’t do anything to burden yourself. We start out with one person, we educate, and those one will go to two and those two to four, and we just keep going down. And no money involved, no money involved. It’s just volunteerism. And it’s done a lot. And I believe we’ve saved a lot of lives by doing that.
HR:
Now, have there been more young people here in the United States identified with dementia, since you kind of broke the mold of it being an old age kind of thing when you got it — what is the ageism at this point in regard to dementia from your perspective?
ME:
Well, I have to tell you, you know, I got started about 12 years ago doing all this. And at that time, there weren’t many people talking about this disease. And I remember is only about a handful of us about three or four of us around the world. And we started getting a lot of people involved talking about it and being advocates. And while we made a lot of progress, I’m a little bit concerned nowadays, because while we created all this great advocacy for people like me at the younger age to speak up about this, I’m now seeing a slight twist on that. More of the people who are coming out now, or doing the advocacy They’re more interested in, I guess, more of support type environment. So the coming out, but they’re really talking to each other, rather than doing the advocacy quote, which is drastically needed. And that’s what’s kind of scare me because I’m always getting a feeling that if somebody else doesn’t pop up, like another Ellenbogan, or Richard Taylor, to drive all these people to continue doing what we started, I’m getting a feeling it’s gonna dry up again. And that’s not a good thing. I mean, it’s it’s okay that these people want support groups. But we also need to take those people who are in support groups to take it to a next level and duty advocacy. Because, as you know, there are many people out there who can still speak or write or even try to reach out to these government officials that nice are the most important people, in my opinion today that can continue on the mission that we kind of got started.
HR:
Well, that’s a great, great point, the early onset of dementia, when people are still functional and still can do things. That’s the important time. How have you been received? I know you’ve testified before Congress and world organizations and things, has there been a positive change in the way it’s been received from your viewpoint?
ME:
Well, I have to tell you, I, I’ve been very fortunate, I’ve been involved with so many organizations out there, and most of them have led to good changes. How they proceed is coming out of it. Somebody told me not too long ago, they said, Mike, you’re the bulldozer of dementia. You know what I am, I mean, you know, if you come in here quietly, and you just try to be polite, and all this, it just doesn’t get you anywhere. And sometimes you got to come at it in ways and people don’t like that. They don’t like that. And, you know, I know, I’ve pissed off a lot of people. But at the same time, a lot of people have changed their ways. I have been successful changing a law. But I would say the majority of the institutions that I have worked with, have progressed in ways that have made things so much better for people with dementia, and it’s changing for the better. So yeah, I’ve done a lot of good, but at the same time, I think I’ve also made a lot of negative impressions on people just because of the way I take my approach. But hey, the bottom line is like pretty good change. And that’s, that’s the important thing.
HR:
You’re making Alzheimer’s and dementia omelets, and you got to break a few eggs.
ME:
Absolutely.
HR:
Now, let’s talk a little bit from your viewpoint. We all read headlines it is this new research going on and Alzheimer’s and a new drug on the horizon and new approaches. What would you say the state of the art is the state of the science for coming up with? Let’s talk pharmaceuticals a little bit, uh, to help this condition?
ME:
I have to tell you, I don’t know if you remember. But if you would ask me this question about five years ago, I would have told you it’s like a 1% chance of hope out there. I think for the first time and I’m going to say it on your show. I think we’re at 10% now of hope. And the last time I gave somebody some figures, probably 2% or 5%. And that was a while ago, I honestly believe we are on track, to start to come up with some ways that we will be able to at least slow down the process of dementia. I don’t think we’re that far away. We’re getting better with the biomarkers, figuring out who the right people are. So I’m very excited about that. What I’m not too excited about the ways I’m starting to see some real negativity from government officials on how they’re going to make those products available to people who need them the most. And for example, I don’t remember the drug that came out, I guess about two years ago, and it passed to the FDA. But after pistor, the FDA, CMS got involved and they said well, we’re not going to support this drug because there’s not enough information out there and they wanted to impose their own clinical trial on this particular drug. And part of it I don’t think really had to do With the drug itself, I think what really made them more concerned was the cost factor of this drug. Originally, when this drug came out, it was going to be $56,000 a year. And you know how money talks, you know, in government, and then they finally brought it down to hit that $28,000. But by that time, they decided they didn’t want to cover this. And they put all kinds of stipulations, and sadly to say is, I know, a couple people who were really taking advantage of this drug and really needed it drastically. Because for them to buy six months or a year and a half delay meant a lot, because that could be to wait to the next cure. And the doctors had to tell I’m sorry, I can’t give you this drug anymore, because he removed it from the market. And some of these people were tearing, they were really crying because it took a while wait for them. And this wasn’t the first example where CMS has really taken directly to people with dementia, there was also the pecky, that you may remember, where the amyloid PET scan was another form of a biomarker that people could use to determine whether you had Alzheimer’s or not which in my favor, it turned out to be a very good thing, because I got that test. And it showed that I didn’t have the Alzheimer’s. So there’s really some very positive things by taking these tests. Well, their theory was, well, if there’s no cure out there, what’s the sense of taking a test? Well, that’s ridiculous. That’s ridiculous. You could be going down the wrong path with the wrong type of drugs. Because we’re somebody’s dementia, under the dementia umbrella, you take certain drugs, they work against you. So you really need to know what type of dementia you have. Plus, it’s very helpful to understand why you should start taking some of these drugs, if you know you have the problem. So I’m really worried about the next steps that we’re going to take because I believe this has really created some drawback in the pharmaceutical business side where people are a little bit gun shy, at this point to come forward with new drugs, because they don’t know how their drugs could now be impacted. Or they’re going to have to jump through all kinds of loops and spend even more money than they anticipate. And I and you know, it’s not cheap, it cost a ton of money to go through these clinical trials, especially when it comes to dementia, because it takes a long to prove these things, usually about 18 months, and a lot of money, it has to be invested. So you know, somehow these companies got to get or recoup some of the money, they invested into these things long term.
HR:
Great points. You’ve had some experience with clinical trials, haven’t you?
ME:
Absolutely. I’ve been in probably 15, 20 clinical trials, and some of them have been really good, and some of them are a little scary.
HR:
What’s one thing you’d like to tell our audience about clinical trials? Because most of us don’t know anything about it most of the audience? You know, and what’s one thing you’d like to tell them about clinical trials in general?
ME:
Well, first of all, it depends on what place you go for clinical trial and how you’re treated. But it’s very important that we all get involved in clinical trials, because as we give our bodies to this, and we’re the only ones who can really do it with us who are living with the disease, you can’t bring normal folks in for most cases, you know, you have to have people who actually had the disease so they can figure out how to help those people. But too many people think of the failures that come out of these clinical trials. And I like to say it’s not a failure. Every time they go through one of these things, and they pull one of these things off the market, they learn something new, which takes them to the next level that will hopefully bring in closer to the cure. So it’s very important for people to realize that what you are doing is going to help no matter what it’s going to help. And yes, we’re gonna eventually get there. And again, you know, you just got to be careful what place you use that you’re going to because not all places, in my opinion, are a fair place to go for clinical trials because so places try to abuse what I would say with the system that we have in place today.
HR:
Very interesting, very interesting. How can our audience find out more about you, Michael?
ME:
Well, that’s a tough one anymore, to be honest with you. Because I’ve shut down my websites and everything. And else, but they through pretty much any organization, they all know how to get in touch with me. They could also Google me and they could see a lot of the things that are out there, you know, around my knee. But I’ve been involved in so many different things that so many people do know who I am that I’ve had people reach out to every sort of disease and get to be so somebody you can once or to LinkedIn.
HR:
To the average Joe on the street. Who’s right now, if I asked them about Alzheimer’s or dementia, what might you think might be their biggest misconception about the whole thing?
ME:
I would probably have to say that it’s the stigma associated with this disease. And what they think of a person with dementia is like, you know, they all tend to think that somebody who’s got Alzheimer’s or some type of dementia is somebody who’s in a wheelchair, unable to move with their head back. And, you know, just sitting there. And that’s so far from the truth, because so many of us have so many good years left, that can be utilized in good ways to help society. And if we were just given the chance and opportunity, we could do so much more. But the sad part is, they don’t feel that we should still be around in the workforce, you know, especially if you’re a doctor or lawyer, you know, they think, oh, that you’re liability? Well, we would be if we were by ourselves, but there’s no reason why we can’t be paired with somebody. And there’s a lot of knowledge that can be passed on from a person like myself. I mean, I used to be top notch in my business and somebody people could have learned from me and stuff to shut me out. And I there’s so much that I could have taught so many new people in this industry. Yes, I get it. I can’t. There’s no way I could do it myself today. But there’s also no reason why I could not be paired with somebody to work and still continue to be a part of society and still continue to help out.
HR:
All right, is there anything else, Michael, that we have not covered today that you’d like to cover for our audience?
ME:
Well, I would like to touch on something if it would be possible, since we brought up clinical trials, there’s an organization out there, that in Pennsylvania, is very different than all the other clinical trial facilities yet. Nobody wants to tackle the issue. And what I mean is, these people actually charge money to get into clinical trials. We’re nobody else in the whole industry seems to be doing that. And it’s sad, because this is a form of discrimination. Because the area where this particular location is at, is in an environment that’s primarily Hispanic, and African Americans. And yet, the people who need it the most, as you know, Hispanics are one and a half times as likely to get this disease and African Americans are twice as likely. But they can’t take advantage of this place. And I don’t know if you want me to mention it or not. But you have to be careful where you going forward your clinical trials, and there’s probably about 30 clinical trials between Pennsylvania meddling and Delaware and none of them charge this one place does. And that’s what people need to really be careful about is because you don’t always have to pay money. In fact, the majority of places you don’t have to pay money to get in clinical trials, but yet some places trying to make a business out of it. And it’s sad.
HR:
I’m glad you brought that up. That was something I was completely ignorant of that that was going on.
ME:
Well, this company is very big. And I’ve tried to get other people to tackle it, but nobody wants to tackle to go after this major organization.
HR:
Very interesting. Well, maybe we’ll have an offline conversation about that. Is there anything else you’d like to cover?
ME:
Ah, nothing at this time. I just hope more people will jump on board to help for dementia, because, like I said, there are no survivors for this cause and most of the people who have this can’t do this, and we really rely on the public to help us because if they don’t, we’re just another number out there.
HR:
Okay. If you could go back in time, and give yourself a piece of advice. After you first got diagnosed, what would that be? If anything?
ME:
Well, if I had to do it all over again, I would probably try to start out with some bigger connections in this industry from the very beginning. Rather than work my way up, I would have tried to go right to the top rather than start my way at the bottom.
HR:
Well, Michael has been a pleasure to have you here yet again at different brains. We hope to see you again soon. Thank you so much for all you’re doing in the dementia and Alzheimer’s world and keep up your great work. Thank you so much.
ME:
Thank you, I hope I can continue doing it another 10 years.
