Wednesday, January 4, 2012

Guest Post: What It's Like to Have Young Onset Alzheimer's

Editor's Note: We earlier mentioned Michael Ellenbogen, who is trying to spread the word about early-onset Alzheimer's Disease in order for more people to become familiar with the signs and the scope in order to devote more resources to prevention and a cure. Michael wrote today's guest post exclusively for our blog.

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. Now I am frustrated, frustrated, and more frustrated. Not because I have Alzheimer’s, but because of the disparity and stigma surrounding this disease.

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.

Why is it that no one wants to talk about this disease? Why are stars or famous people not proud to stand up and support this cause? I realize there is no pretty outcome, but that is why we all need their help. There are so many of us who are directly impacted by this disease and we choose to do nothing. I know it’s not easy and most are so overwhelmed dealing with the disease. If we do not use our precious time for this cause, who will?

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. Not that I had many. 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 I 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 and had trouble trying to follow the ball. It took me much longer to tee off then 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.

The only good thing about having the disease is that I am able to advocate for the cause, and speak for the many others that can no longer write, speak or have passed on. So please help me with my call for help to help. I need to get the backing of famous people so we can change the perception that exists with Alzheimer’s today. It does not only affect the older generation, but it has an even bigger impact on the younger generation when they are diagnosed. I know it’s very easy to read this article, have a moment of feeling sorry, and then to just move on without doing anything.

Keep in mind this could one day affect you, your spouse, your son or daughter, their grandchildren, or even a close friend. Please do not wait till that day. Do something today. Think of all the lives you can save if you start now, maybe even their lives.

Please help me by joining my cause to make others aware of this debilitating disease and how it also affects young people. The youngest on record is 24 years old. Please reach out to me at my website so we can work together to make Alzheimer’s disease end with me. Someone will develop the disease every 69 seconds. That number will increase to every 33 seconds by 2050.

Don’t wait, our time and lives, are too valuable.

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