Michael Ellenbogen was diagnosed with Alzheimer’s disease at age 39. A former corporate manager, he now dedicates his time and energy to education and eradication of Alzheimer’s disease. This article was written with the assistance of Emma Steel.
Imagine waking up one morning and going about your daily business–you have had breakfast and are about to leave for work, but you can’t remember where you left your keys. Common enough you say; we have all done that at some time or other. Your wife hands you your keys and off you go. Life carries on as normal for a few weeks then one day, while at work you have to call a colleague, but you have inexplicably forgotten his extension number; an extension number you have called numerous times a day for the past 10 years. You feel silly but put it down to being tired. You work hard and hold a high profile position in a financial institution so it is understandable that you will have memory lapses now and again. Like the key incident, you laugh it off.
Over the next few months things start to get worse–you are forgetting people’s names even though you have worked with them for many years, you are making stupid mistakes at work, you are forgetting to go to meetings, you are finding it really difficult to do the simplest of tasks, you continually forget where you parked the car. Again, you are told by friends and colleagues and doctors that it is down to stress; that you need to slow down, maybe take time off, etc. But you know there is something wrong and you know that it is more than stress.
So you start keeping a record as best you can and you pester your doctor for answers. One day you get the answer. An answer no one expected.
An answer that will change your and your family’s life forever.
You have Young Onset Alzheimer’s Disease.
Alzheimer’s is an incurable, progressive loss of brain cells. In the beginning it targets the memory and speech, as time goes on the symptoms become wider ranging and debilitating and include disorientation, difficulty judging distances, poor vision, poor speech/writing abilities, repetitive behaviour, mood swings, and depression. Then in the final stages of the disease it is not just the mind that is affected; the body is rapidly declining also. In the late stages of Alzheimer’s there will be difficulty swallowing, a need for assistance when changing position or moving from place to place, there is increased vulnerability to infection and a complete loss of short-term and long-term memory. Death is slow, painful, undignified, and inevitable.
My name is Michael Ellenbogen and this is my diagnosis.
For the last decade I have campaigned on behalf of myself and all those suffering from this devastating disease. Why do I have to campaign? I do it because over five million Americans have Alzheimer’s, and other forms of dementia. And what is more shocking is the lack of knowledge out there about this illness.
People look at me and think there is nothing wrong; I am not in a wheelchair, I have full use of all my limbs, I can see, hear, speak and listen…… but not for much longer.
I can no longer write or speak like I used to, what you are reading now has been written by a friend of mine who helps me put my words onto paper. My friends have become distant and even when in their presence they will address my wife when enquiring after me. This is heartbreaking for me as the fact that they feel they can no longer talk to me really saddens me.
Grocery shopping with my wife is time consuming and frustrating as I find it difficult to make decisions and plan ahead for meals. Eating out was something I used to enjoy but now I am unable to read the menu and assimilate the information into a decision. At home my wife has to assemble my meals in a series of individual decisions.
There was a time when I could follow a map and easily get from point A to B. Now I rely on my wife for navigation and I know that it won’t be long before I can no longer drive and that really upsets me because I love going out for long drives in my car as it is the last vestige of independence I have left.
I used to be smart, I worked hard, and I accomplished a lot. Seeing all my failures today are giving me a new appreciation for the things I was once capable of doing. I was a very different person, but that intelligence still shines through occasionally as I am challenged to invent new coping strategies to respond to these changes.
I lost my job because I could no longer function in the environment, so now I spend my days advocating for Alzheimer’s and it gives me a reason to get out of bed in the morning because it stimulates what is left of my mind.
I am losing my mind and I can see it happening, but I cannot do anything to change the course.
I am slowly becoming a child again, and will soon be a body with no mind.
We need to take our heads out of the sand; we can no longer turn a blind, this is a very real problem, this is happening now to millions of people across America.
We need your help!