At least I don’t have Alzheimer’s…

I may be living in the desert southwest now, but an unusually rainy October day transports me back to thoughts of caregiving in the northeast with my mom. Those cold autumn days when although the changing leaves were breathtaking and brilliant, the falling rain foretold of coming cold and a winter despair that seems to accompany dementia caregiving.

In this reminiscing-state-of-mind I can’t stop thinking about this week’s announcement from Ted Turner that he’s suffering from Lewy Body dementia or LBD as is often shorthanded. I applaud the courage it must take for anyone to be public about a dementia diagnosis. It is first and foremost an emotionally crippling diagnosis for those hearing it and for those supporting as family and friends. It takes a special courage to speak out given today’s stigma around brain disease. Especially ultimately debilitating brain diseases that has no sustained treatment or cure, like Alzheimer’s and related dementias.

You may remember Lewy Body dementia from Susan Schneider; she’s Robin William’s widow who referred to LBD as “the terrorist inside my husband’s brain” and what she believes may have driven her husband to commit suicide when combined with his life long bouts of depression and a misdiagnosis of Parkinson’s Disease.

But, back to Ted. The coverage by media news outlets of the Turner announcement may be fanning the flames of misunderstanding around LBD and other brain disease. The quote they featured most often this week was:

” It’s a mild case of what people have as Alzheimer’s. It’s similar to that. But not nearly as bad. Alzheimer’s is fatal. Thank goodness I don’t have that……”
Ted Turner

 

Many in the dementia and Alzheimer’s community are speaking out since the Turner announcement to share facts about this disease. I think the article posted by Pines of Sarasota, Education and Training Institute is most compelling.

 

Here’s a link to their entire blog post “9 Facts the Media Failed to Report on Ted Turner’s Lewy Body Dementia Diagnosis” and some highlights from the article:

“We cannot know whether Mr. Turner wasn’t given an honest explanation about Lewy Body by his physicians or whether he had a different reason to severely diminish the severity of this condition. So we wanted to take this opportunity to help set this right and give the public some critical information about Lewy Body Dementia that the media failed to add:

  1. At the time of this writing, all dementias are fatal. (And yes, that includes Lewy Body.)
  2. Unlike Alzheimer’s disease, people living with Lewy Body dementia often experience vivid hallucinations.
  3. Other LBD symptoms include movement difficulties, depression, insomnia, acting out dreams, and memory loss. Symptoms are episodic, for example, a person can be completely fine while at the doctor’s and then act entirely different at home.
  4. LBD is commonly misdiagnosed as Parkinson’s, as both conditions include tremors as a common symptom.
  5. This Parkinson’s/LBD misdiagnosis is dangerous, as 1 out of 4 people with Lewy Body Dementia will die if they’re given Parkinson’s Diseasemedications by mistake.
  6. Lewy Bodies are abnormal protein deposits that develop in nerve cells and affect parts of the brain that control thinking, memory and motor control (movement).
  7. Attention span and alertness gradually decline.
  8. The only way to definitively diagnose someone with Lewy Body is during an autopsy.
  9. Men are twice as likely as women to get Lewy Body Dementia.”

Thank you JoAnn and Valerie for sharing your thoughts and expertise.

Many diagnosed across the broad spectrum of dementia (yes that includes Alzheimer’s and Lewy Body among many others) spend months and years trying to come to grips with their diagnosis before they’re able to tell others. Many “living with” and “partnering alongside someone” with these diseases search for role models to follow and unfortunately find few.

I always search for role models, the super-heroes among those diagnosed with Alzheimer’s and dementia. Those who can educate and lead the rest of us through an understanding of these diseases from the inside-out. I don’t have to look far to find my friends Mike & Cheryl Belleville. See Mike’s story from Dementia Alliance International, 

called Hello, My Name is

 

Thank you Mike for speaking clearly and out loud about your diagnosis, your experiences, your hopes and your fears. As a mentor to others, coming fresh out of a diagnosis and with Cheryl by your side you have given back in ways that are too significant to measure. Thank you Cheryl for being open and willing to have you stories told out loud, it always take two. So thank you both.

We all need to remember the treasure that Robin Williams left in this world. He told us:

“You’re only given a little spark of madness. You must not lose it.”

 

#dementia, #Alzheimer’s, #LewyBody, #family, #caregiver, #aging, #age, #caregiving