I'm leading the way to Alzheimer's first survivor by participating in the Alzheimer's Association Walk to End Alzheimer's®. Currently, more than 5 million Americans have Alzheimer's and that number is expected to grow to as many as 16 million by 2050. Our future is at risk unless we can find a way to change the course of this disease.
In late 2015 Carol complained that she had trouble finding her words.’ Simple words and phrases seemed increasingly hard for her. Certain household tasks seemed harder and harder for her to execute. Things, not good things, happened.
Carol saw an add for an over-the-counter memory improver, said to enhance one’s memory and cognition skills. The stuff did not seem to do any good, or cause any improvement.
So we made an appointment with her primary care physician. We saw her in early 2016 The Doctor was well-meaning, but a bit clueless, or so it seemed to me. The Doctor referred us to a gerontologist. Carol was only 63,and this seemed a bit extreme. Little did we know that this was just our first shot down the rabbit hole that is the Medical Profession’s approach to caring for Alzheimer’s sufferers.
The gerontologist was a kindly elder doctor. Very empathetic. Very gentle. His approach was to administer the standard ‘memory’ test. You know the drill- form a sentence, draw a clock face, draw intersecting pentagons, remember three simple words and repeat them back after a conversation. Carol failed spectacularly. We looked at each other. I prayed to myself, ‘don’t let this be Alzheimer’s.’
Well, his response to her responses was to refer us to neurologist. The rabbit hole deepened. This doctor was nice enough, but he, we found, was working on finding subjects for clinical trials. I found that somehow and somewhat hope-giving.
Carol might be given drugs that might slow the progress of her symptoms. In this case, slow is good, right? Well, getting into a test was hard, and in our case not possible. Carol’s symptoms indicated that her progress was too far to allow her to join any of the trials the good Doctor was working on.
One ‘positive’ outcome was that as a part of the evaluation for one of the studies for which she was be considered was that she was given a PET scan. This scan is rarely given, I am told as it is expensive and most insurance will not cover the cost of one. The PET showed that she had a build up of a substance, amoloyd plaque, that is an indicator of the presence of Alzheimer’s.
At last, a probative diagnosis of Alzheimer’s. This was not a happy day.
Since then I have watched as the love of my life has been changed.
I am dedicating my self and my energies to being a part of the solution. So many people are caring for people suffering who are suffering themselves. By working with thousands of like-minded people, I hope to be a part of the solution.
I hope you will join us.
Thank you for helping us advance Alzheimer's support, care and research!
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