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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12 comments on “A Specter Among Us

  1. You have written about a subject close to my heart. My mom has dementia and it has been a hard journey for my dad and my whole family over the years as we deal with each different phase of the disease. I wholeheartedly support your view that the government (here in Canada as well) needs to look at this soon to be epidemic. Thank you. 💕

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  2. My mom suffered from Aphasia for the last 10 years of her life. No communications whatsoever other than her smile. It was hardest on my dad who became her voice and cared for her until she died last September. 😪

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  3. Good & thoughtful post…but …until it’s personal…it’s not personal…
    That said…keep on keeping us informed…

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  4. I do enjoy your blog.

    You are, however, in error, about research and funding on Alzheimer’s. I worked on clinical drug trials for Alzheimer’s. R&D for Alzheimer’s is very heavily funded. Alzheimer’s is a very tough nut to crack.

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    • Steve, I guess I didn’t do a good job of explaining what I meant. I was using the examples given on the PBS special as well as statistics I found on AARP. In comparison to say cancer, which receives around $5 BILLION in federal funding, Alzheimer’s receives about $550 MILLION. Considering the coming financial toll, not to mention the human toll, research funding of brain diseases is a drop in the bucket compared to other diseases. K

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      • Federal funding is only the tip of the iceberg, and Alzheimer’s is not a solo U.S. issue.

        The Alzheimer’s clinical drug trials on which I worked were backed financially by a consortium of every major drug company in the U.S., Europe and Japan. So, those U.S. federal figures are highly misleading. The issue of how to deal financially with the huge incoming population of dementia patients is a global problem.

        No time right now to sort out and find that data. I’m retired now and mostly a Mr. Mom Grandpa, but at the time of my retirement, the number one and two drug trial issues were AIDS and Alzheimer’s.

        And, as I said, money was not really the issue. Just about everybody has settled on the amyloid plaque theory as the cause of the disease. In the last trial I worked on, the drug succeeded in dissolving the amyloid plaque in trial patients, but it provided no benefit. This was a very disheartening setback at a time when we thought we were on the verge of developing effective treatment. We think we know the cause, but treatment has proven to be a very elusive issue.

        Cancer is a different issue than Alzheimer’s, and it makes sense that it receives such massive funding. It might be a 1,000 different diseases, not one single disease.

        At least this was the state of the R&D at the time I retired, which was 5 years ago. I’m not going to suggest that I’ve been keeping up closely with the issues since then.

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      • Steve, I appreciate the insight. I do realize this is a global issue. I also realize it is not just about Alzheimer’s. My husband has one of the Aphasias. Alzheimer’s drugs, according to his two doctors, do not work on Aphasia. This is a complicated issue and the more people like yourself help to educate about brain diseases, the more progress we will make. Thank you for your comments. K

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  5. Kathy, Don’t know why this never seems to be mentioned in regards to dementia and other mental impairments in us older adults, but back when my mom was diagnosed in 2004 (she died in 2007), she was given so many “head meds” for her Jekyl/Hyde mood swings along with an experiment drug to keep her alive. Some docs said even too much valium can cause dementia, which I tend to believe is true. There was never any Alzheimers or dementia in our family tree until this happened. Not for nothing, but I do limit the intake of “head” drugs as we don’t know what nasty effects they may have on us.

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    • Mary, I have recently read a couple of articles about not only “head meds”, but sleeping aids as well, being a possible link to dementia, most notably memory loss. There is a lot we don’t know about the brain. K

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  6. Hi Kathy. Thanks for an enlightening post. My husband, who has Alzheimer’s, is at the point where his comprehension and language production is seriously compromised. And I know it will only get worse. Aphasia is devastating for the individual suffering, as well as those who love/care for the person.

    There is research that shows that even though someone may not understand your words, or may not remember your words, they will remember how you make them feel. This gives the caregiver some hope and encouragement that we can bring on the love and understanding, and it will make a difference.

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  7. Thank you Kathy for publishing yet another remarkable article of relevance to all of us retirees.

    I look forward to all of your Retirement Blogs.

    Thanks again,

    Graham

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