There is No One Better Than YOU to Speak Up

by Michael Ellenbogen, Dementia Advocate

I am going to start with the end in mind. You can do all this no matter what your challenges are. In 2008 I was given a diagnosis of Alzheimer’s disease after struggling for 10 years. As a workaholic I found it difficult when I could no longer work, or have purpose in life; something that is so important so we do not spiral into decline.

Early-on I reached out to the Alzheimer’s Association hoping I could volunteer my time in a meaningful way. However, it transpired that no one was willing to trust me to do any job I really wanted; they were only prepared to let me do simple jobs that I disliked. Eventually they placed me on a committee where I have had lots of input and a huge impact on others’ lives.

Around the same time the Alzheimer’s Association reached out to me to work in a new group called ESAG (Early Stage Advisory Group). It was a good start to my advocacy, but I soon realized so much more needed to be done, that there was a lot not being accomplished. In the mean time I started to do my own advocacy work.

Before my term with AA came to an end I applied for a position with the National ESAG based in Chicago, but I was not accepted. Part of the issue, I feel, was that I was too vocal. However, I continued my advocacy by being invited on radio and television shows, and had many articles published in papers and online.

Even though I was not on the ESAG team I made sure my voice was heard at the National Alzheimer’s Association by making friends with some very high-level people. My strategy was to connect with as many people as possible who were in a position to bring about change. I did not want to deal with the people who were not able to make the big decisions. It’s not that I did not believe in those people but I have a limited amount of time left and I need to make it as productive as possible.

I started speaking regularly at NAPA and making connections with the committee members. By this time I had reapplied for the Alzheimer’s Association National Early Stage Advisor, and this time I was accepted.

I started to reach out to others with dementia and began mentoring them, teaching them what to do, and before long they started to have a voice, and realized they did not have to depend on their care partners. I was lighting fires under them and putting ideas in their heads and they made them successful, and then started teaching others and it is continuing. Many of these people are now doing great things, you would be amazed.

Let me give you two examples. Most recently an organization called Dementia Alliance International was formed. This is a group of people who all have dementia and are looking to become the voice for people like you and me. Another group has been set up by a friend of mine. This is a group of dementia mentors from all around the world who offer online mentoring to the newly diagnosed, which is ideal because it can take a long time for us to understand things, and at times we can feel lost. The site’s popularity is growing quickly.

Both of these groups do not allow the care partners to be involved because they always end up taking control of things and we want the voice of those with the disease.

I have also worked hard and pushed for a plan in my state. After it was approved by the governor I used every angle to get on the committee as they were going to need help to make changes, and create the procedures and policies that would impact others with dementia including their families. I was appointed by the governor, which was really good, but I was afraid that I may let others down on this important mission. I made use of the connections I had so I was able to be as productive as possible.

At first I found it challenging dealing with some people on this committee because they are so smart and I can only process things very slowly, so by the time I had understood what was said they had moved on to the next topic. I quickly realized I had to find a new way of communicating. So I started emailing them after the meetings to share my thoughts and even though my writing skills are poor everyone adapted and made allowances for me and I soon became a key contributor. d.

It is also important to remember that if you are in a role such as this you must remove yourself if you cannot do justice for those you are trying to serve. I know I may be making this sound easy but it really was not. When I started doing my advocacy work I was so overwhelmed. I could barely keep up with what I was doing and became very depressed. People around me kept telling me to stop and slow down, but I ignored them and kept pushing harder and harder. It took me many months to overcome those difficulties, but today I can handle almost anything.

I have now become an ambassador for AA, which means I meet with my local congressman in order to bring about more dementia awareness. I have made many requests of him and he has supported them all. Most recently he has signed on to things like sending a letter to the House Appropriators for an additional 200 million dollars, and The Alzheimer’s Accountability Act H.R. 4351. All these things are to help boost the money needed for research and more dementia awareness, which is badly needed and you can help with that also.

Sometimes you need to think outside the box. On two occasions I was able to get my congressman to read a short speech to Congress, and he even helped me to add the first ever letter to the Congressional Record requesting funding. This was shared with every Senator, Congressman, as well as government employees. This has become a part of history.

All it takes is the will to bring about change. There is no one better that can speak up for this cause then you because you are the experts in what you are dealing with. Your voice matters so much more then you may think. Today I am on many different advisory boards and regularly communicate with leaders of the G7 World Dementia Council. I have a direct connection to the chair’s private secretary. I have even written a book about my experience living with AD, pushing through obstacles until it was published as an e-book, and then printed.

Don’t ever let people tell you cannot do something. Find a way around those people. Your will and passion is so much stronger and you can make these contributions if you decide to. It is all up to you. We can do anything at our own speed.

Working as an advocate was the best thing I could have done. My mind has improved in so many ways and I continue to beat most odds. I know others who have benefited in the same way because of their advocacy work. I know I will not beat this disease, but I am not going down without a fight. So if there is one thing to take away from all this it is to find a new purpose in life, because this is a new road with many twists and turns. Don’t give up. Live your life to the fullest.