Over the past year, I have gotten a lot of questions about what it is like to have Alzheimer's disease. Some of these have been from friends and acquaintances. Some have been from perfect strangers. I got used to having friends question me after my diagnosis, and very quick departure from work. My co-workers wondered what was wrong with me. When I would tell them, they would respond with disbelief, "I don't see it! Your doctor must be wrong!" When I bump into those same people today they no longer question the diagnosis.
I asked one of my buddies if he could tell when I was having a symptom? "Can you see it?" He looked long before answering.
"Yes," he replied. "Something in your eyes, and your head gets crinkly. And when I ask you a question, it takes a long time for you to answer. Your walk changes. Your whole demeanor changes from happy go lucky confidence to ... careful questioning. I can see you, trying to smile through the sadness in your eyes. And I try not to notice, because you always want to act as if it isn't happening. But, I can tell."
What does one say to that?
Early on-set Alzheimer's (EOAD) has some interesting qualities that Late On-Set Alzheimer's doesn't have. Our lives are disrupted more quickly than a person who has retired and is only around a few select buddies and family. We younger ones, are employed, or in the case of non-working spouses, heavily involved with lots of other people. These people notice when something changes in our abilities, probably before we do. As was the case of my supervisor who silently wrote and kept a list of my short comings for a year, and then telling me just before trying to fire me. Our spouses think about leaving, if not actually doing it and divorcing us. The marriage just seems to fall apart. Everything in our lives just gradually gets turned upside down. Like a boat drifting into rapids, turning over in slow motion. Everyone falls out. How can you plan for this?
Everyone says, (and I do mean everyone) “It won’t happen to me or you!!” But, it does happen to some of us!
I was lucky.
Odd words, I know! My family had been researched. The gene was found that causes our brand of EOAD. And still, when my doctor looked up and said, “This has already started in you!" I was surprised, hurt that it didn't wait until I 55 or later.
Yes, I am lucky! My EOAD was caught early. I was able to make some hurried plans and applications for disability, rather than getting fired. I did not lose all of my friends and family from misunderstanding of my situation. My family and friends rallied 'round me even as they questioned the diagnosis.
My wife and I had separated and divorced four years prior to the diagnosis. She called and asked me to move back into the house that we had built together. Was our marriage a casualty of EOAD? I don't know, nor do I care.
We are together in this disease, now. I am sure of only one thing.
I am one lucky guy!!!!
Chuck Jackson
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