A Specter Among Us

Aphasia Poster

The big house, the fancy car, the expensive furniture and designer clothes will not make anyone happy. Finding a cure for diseases like dementia will. As I watched the PBS special on Alzheimer’s: Every Minute Counts, I know the feeling of urgency first hand. With the aging of baby boomers dementia is expected to become an economic train wreck taking down the health care industry and with it, the economy.  We cannot even begin to calculate the emotional toll.

While most people are familiar with Alzheimer’s, there are many types of dementia the general public is unaware of. They are just as devastating to the victims, families and our communities. They are even more under researched than Alzheimer’s.

Joey Daly has educated the public about Lewy body dementia through his YouTube chronicles of his mother, Molly as she slips away from him. He calls his efforts Molly’s Movement (https://mollysmovement.com). As NBC Nightly News reported, “Before these videos, you couldn’t explain it to people,” Daley said, adding that he couldn’t watch his mother deteriorating without giving the ordeal some purpose.” The videos are hard to watch. They are painful and powerful.     (http://www.nbcnews.com/news/us-news/battling-dementia-mother-son-s-incredible-journey-n757196)

Then there are the Aphasias. When you say, “Aphasia” almost everyone says, “What’s that?” To me, it is the most hideous disease no one has ever heard of unless they know someone who has it. The National Aphasia Association defines it as “an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections.” (https://www.aphasia.org)  One form of Aphasia is Frontotemporal Lobar Degeneration (FTD).  It is most likely to lead to Alzheimer’s.

There are only (only!) two million people in the United States with Aphasia. Perhaps the most famous is former Arizona Congresswoman Gabby Giffords who was shot in 2011. There are several types of Aphasia. And like other forms of dementia, it is expected to rise in numbers as baby boomers grow older.

June was National Aphasia Awareness Month. When I posted that on Facebook, it received barely a notice. I have no idea if that is telling or not. I do know it’s my personal experience that most people don’t want to consider they may have one of these diseases someday. Sticking our heads in the sand won’t make it go away.

Lobbying our governments to fund more research and as quickly as possible may make it go away. We have spent trillions on wars when the biggest threat to our national security is right here in our own backyard. Write your representatives. Inform yourself. Educate your family, friends and neighbors. According to the Alzheimer’s Association there are about 5 million people in the US today with Alzheimers alone. By 2050 that number will have swelled to a train wrecking 28 million! The clock is ticking. Every minute does count.

 

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