It’s on us who are more enlightened to educate those who are not, and dispel the myths of the misinformed about Alzheimer's disease and persons living with dementia.
By Elaine C. Pereira
Alzheimer's Reading Room
Increasing funding for Alzheimer’s research is crucial! Also crucial is having an accurate understanding of the facts about Alzheimer’s. No disrespect to the already well informed, but the general public needs a better knowledge base to recognize the subtle, often excused-away symptoms of dementia issues.
It’s on us who are more enlightened to educate those who are not, and dispel the myths of the misinformed.
Just as breast cancer supporters have worked tirelessly to advance research funding with their Pink ribbon campaign, Alzheimer’s awareness advocates need to make Purple the new Pink!
Maybe these basic facts will help others. Please pass them on.
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1. Alzheimer’s is a real neurological disease.
Even people with only a minimal understanding of medical issues grasp the basics of major diseases like cancer, diabetes or heart problems. In fact my son-in-law’s high school juniors know that when a stroke occurs on one side of the brain, it affects the opposite side of the body. That said however, most people don’t have an adequate understanding of Alzheimer’s or dementia.
Alzheimer’s is a real, fatal, progressive disease with no treatments. It is not just a quirky personality change.
Because of how the disease affects the individual’s brain, their personality is affected usually causing adverse changes. Hostility, paranoia, suspicion are frequent first indications in otherwise kind individuals.
I’m an occupational therapist and talked frequently with my husband about my mother’s deterioration from Alzheimer’s. I was stunned, an understatement really, to find out last year that he did not know that Alzheimer’s “caused real brain changes.”
During a television spot on Alzheimer’s, my husband and I saw two brain scan images placed side by side. One showed a normal adult brain and the other the brain of someone with Alzheimer’s. The contrast was striking. It was unmistakable comparing the shriveled, mottled, darkened brain of the person affected by Alzheimer’s disease.
I could hardly believe that having lived with me every step of every arduous day of my mother’s journey through dementia that he still didn’t “get” that Alzheimer’s was a real, brain destroying disease!
If my husband could genuinely remain in the dark after all of his experiences, so can anyone else.
2. By the time Alzheimer’s disease is diagnosed, it has been present in and changing the brain for years.
Current research indicates that Alzheimer’s may exist in the brain causing neurological deterioration for as many as ten years before symptoms appear. A disease or condition that has virtually no physiological clues is especially challenging to diagnosis and find treatments for. Physical symptoms like pain, shortness of breath, unexplained weakness, double vision etc. are disconcerting enough to bring one to the doctor.
But Alzheimer’s has chipped and chiseled away at one’s brain long before, years in fact, there are undeniable memory and personality changes that “are disconcerting enough to bring one to the doctor.”
3. Alzheimer's is the only disease in the top 10 that currently has no cure, treatment or means of prevention. *
Scary isn’t it!
Early detection is the singular difference in saving lives for every disease or medical condition. And by extension knowledge is power or empowerment to get diagnosed and begin treatment early.
But with Alzheimer’s there is no early detection option.
Most likely Alzheimer’s will always be a disease in which clear symptoms follow well after the onset. Although it is not the only condition that is relatively asymptomatic until it’s “too late”, it is the only one in the top ten.
The hope may lie in biomarkers, measurable indicators like blood sugar levels, heart attack enzymes or CA125 (cancer marker). A test that can indicate elevated risk factors for Alzheimer’s by which treatments can begin before the “too late” point is reached would be epic!
And I for one, look forward to the day when NFL players wear purple shoes!
Elaine C Pereira, is the Award Winning author of the Best Selling memoir, I will Never Forget: A Daughter's Story of Her Mother's Arduous and Humorous Journey Through Dementia.
(*“Battle For Adequate Alzheimer's Funding Rages On” by Julie Delcour, Tulsa World website)
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