Michael E. - My Movement
My name is Michael Ellenbogen. I am a writer. I am a husband. I am a father. I was a high level manager. In 2008, at age 49, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. I was always very successful in being able to accomplish anything I set my mind on doing. This diagnosis has changed my life in many ways. When I finally received my diagnosis of Alzheimer’s it was a relief to have an answer that explained the symptoms I was seeing in myself. I knew of Alzheimer’s disease, but I really did not know what it was until I did more research. When I learned there was not a cure for Alzheimer’s I was shocked, and I was no longer thankful for the diagnosis that answered so many of my questions.
Alzheimer’s disease has impacted so many aspects of my life, like my career. But I was surprised by how it has impacted my hobbies. I used to love driving a boat and tinkering with electronics, but I can no longer do either of these things. Electronics are not forgiving, and if you make a mistake the projects can go poooofff when you touch the wrong component. This has happened.
I have tried to take up new hobbies such as golf, but learning new things is difficult. I could not keep track of the ball. It took me much longer to tee off than others, and I felt too much pressure when I was slowing down the people behind me. I would love to play golf, but at my speed and without all the pressure.
Now I am frustrated, frustrated, and more frustrated. Not because I have Alzheimer’s, but because of the disparity and stigma surrounding this disease. Let me explain.
Everywhere I turn, I hear or see something related to Cancer and HIV. The government contributes 18.7 percent of the NIH research budget to cancer, 9.9% to HIV, and Alzheimer’s receives only 1.45%. This leaves me with one question. Why? There are so many more people living with Alzheimer’s than HIV, yet we receive so much less funding.
I started by trying to advocate and enlist others to try to increase awareness. That made me even more frustrated. I was kicked off a forum because others like me felt that the government and organizations trying to fight for Alzheimer’s only let them down. They felt no one was listening to them. They have been to Washington, met with congress and senators. They have written letters and have made speeches. I was the new person on the block and they were already beaten down. Many do not realize how politics work or don’t work. Many can no longer speak or write. Many just do not want others to know they have this debilitating disease.
I reached out to another forum that was all caregivers. But all they wanted was a few minutes away from this topic, because they were so busy taking care of their deteriorating loved one. I just do not get it, if we who have this disease or are affected by it choose to do nothing, who is ever going to know about our personal and family struggles.
I sometimes wonder: why am I willing to waste my last few good years on this fight rather than just enjoy my life in peace? I feel that I still have some great skills left that hopefully will be able to help others. While it’s too late for me, I think of all of those that don’t even know what horrible news they may receive like I once did. That shock of finding out there is no hope and I will die a horrific death. No one should have to go through that.
Do something today. Think of all the lives you can save if you start now, maybe even your own life. Please reach out to me at my website so we can work together. Don’t wait, our time and lives, are too valuable.