The Back Story
I met Michael Ellenbogen while researching for my new children’s book The Staircase on Pine Street. In this story, one of the main characters, Grandpa Leo, has Alzheimer’s disease and it affects the course of the story. I decided to write a foreword where I would explain to children what Alzheimer’s is. I thought I knew enough about it, but while researching online, I learned that there’s much more to Alzheimer’s than most people know. Most people often think it is about memory loss, but the truth is that Alzheimer’s is a slow, silent killer for which we don’t have a cure.
I came across Michael Ellenbogen, a “world renowned Alzheimer’s/dementia advocate” as it reads on his LinkedIn profile. I found out that Michael is an expert on the disease because HE HAS TO LIVE WITH IT. Despite his own challenges and occupations, he agreed to read my manuscript. I will never forget when he told me that one of the most important moments of the story had him in tears. That, for me, was reassurance that my character was believable. His feedback helped me not only shape my foreword, but also to realize that I needed to get on board and help create awareness about the disease.
A few days ago I contacted him again and asked if he’d be interested in answering some questions for my blog. He immediately agreed. In this interview, Michael candidly answers my questions and gives us a rare insight on what it feels like to live with Alzheimer’s disease.
Michael Ellenbogen doesn’t pity himself for having Alzheimer’s disease. Instead, he works tirelessly and passionately to advocate for people who don’t have a voice anymore. He is trying to bring attention to the lack of funding for this disease—which affects at least 5 million people in The United States alone—and to other issues that people with dementia/Alzheimer’s have to live with.
Michael, at what age did you find out you had Alzheimer’s disease?
Michael Ellenbogen: While my symptoms started at age 39, it took 10 years to receive a diagnosis. I wish I could say my case was unusual but many who are young are misdiagnosed.
How is your health now, and what would you say is your biggest challenge?
M.E.: Back in 2008 I had a MMSE (Mini Mental State Examination—an assessment doctors use to help determine the progression of dementia) score of 29-30, and in 2012, after making some serious mistakes; I scored 25. Three weeks ago I scored 22. My heart dropped at that moment, I thought I was doing much better. It may only be a number, but it had a huge impact on me. I am slowly slipping away. Here are just some of my daily struggles:
I rarely do anything around the house because I am afraid I will make it worse.
I used to enjoy reading the newspaper but I no longer do it because I have trouble retaining what I read.
I listen to the weather report multiple times a day and I never seem to know what the weather is supposed to be like, which I always used to know.
I have become so gullible and I don’t understand most jokes or when people are just kidding with me. I was once extremely independent, but now I feel as though I must rely on others.
I appear to watch TV, but you should you ask me what is going on, I’m lucky if I can tell you, but yet it is somehow entertaining, I don’t know how.
There is nothing worse than feeling like I’m slowly becoming a child and I see this over and over every day because I realize what is happening.
But with all this I try very hard to not get upset because I realize I cannot change the course and it will only get worse. It’s not always easy to keep it up.
You are an advocate for Alzheimer’s disease research and awareness, what do you find most challenging about your mission?
M.E.: Most people do not want to do anything to help the cause. This includes the care partners and those living with the disease. Even though I now believe Alzheimer’s may be the third leading cause of death in the US, I am extremely frustrated by the action taken by the government. I believe this is a civil rights issue for those who have dementia*. The biggest problem this disease has, unlike others, is that there are zero survivors which means there is no one there to make awareness like they do for other diseases. That is exactly why people must come together for those who can no longer speak, write and for those who have passed.
*Alzheimer’s is the most common form of dementia.
Why do you consider it a civil rights issue, Michael?
M.E.: As I said it on my speech at NAPA on DC this past July, I should have the right to be treated just like any other person who has a disability. I should have the same rights as a person who gets funding for HIV. I should have the same rights as a person who gets funding for cancer. I should have the same rights as any other person who can drive and has a medical condition. I should have the same civil rights to decide when and how I die. I should have the same civil rights to be in control of my own finances. But because I have dementia I have lost all of my civil rights and more.
What would you tell children who have a loved one diagnosed with the disease?
M.E.: It is so important to remember your loved one for who he or she really was. Remember that if this person does something negative it was the disease what caused the action. People with Alzheimer’s are unable to control some actions no matter how hard they try, and I can assure you that they feel worse because they weren’t in control. Don’t isolate a person with Alzheimer’s. I have lost many friends, and it hurts because now is the time I need them the most, even thought I may not be that exciting person anymore. One needs to feel wanted and liked no matter what.
What’s the best way we can help a relative or friend who has Alzheimer’s?
M.E.: The best thing you can do is not to treat people with Alzheimer’s any differently and show that you still care. A hug, soft talk and your company will make your loved one feel good even though you may not see any signs that this person acknowledges you. When talking to a person with Alzheimer’s use small sentences and give plenty of time to respond, 1-2 minutes, depending on the stage. Remember, this person’s mind has lost control to do anything but yet, some things can be understood at times. I refer to it as being trapped in your own mind.
Keep this person engaged as much and as long as possible. If not, the decline will be much quicker. If this person shows signs of being uncomfortable in noisy environments, try to find a quieter area. It becomes very hard to filter out sounds and noise, which can be very annoying to a person with Alzheimer’s. Sometimes it feels very painful.
What’s your advice for people who have been recently diagnosed with Alzheimer’s?
M.E.: Don’t waste your time by being in denial. Life is too precious and you’ll only have so many good years left. Now is the time to live life to the fullest and do the things you had dreamed of. Don’t only write the bucket list, do it! Wear that expensive pocket book or watch that you only use on special occasions. Start using them all the time.
Most importantly get your affairs in order while you are still of sound mind. Especially a living will. There are special living wills for those who have dementia. Don’t get caught in trap of constant depression because you see yourself decline, it won’t do you any good because you can’t change the course of the disease. If you need medications for depression, take them. They do help with dealing with the noisy environments. They even help you sleep better. Remember life is not over but a road with many twists and turns, and you can definitely navigate it if you push hard to do it.
I can’t thank Michael enough for this interview. If you wish to follow him go on his website: http://michaelellenbogenmovement.com/
(Choose Amazon for your country or region)
Amazon US:From the Corner Office to Alzheimer’s
Amazon UK: http://amzn.to/1qWHDMJ
Amazon AU (Kindle Edition): http://bit.ly/1lzW01V
Amazon CA (Kindle Edition): http://amzn.to/UVPgEr
HELP THE CAUSE: Michael’s fundraising site: https://www.crowdrise.com/apersonwithalzheimersspeaksupforthosethatcannot/fundraiser/michaelellenbogen
Here is Michael, living life at its fullest!