PHOENIX (3TV/CBS 5) -- In the new documentary Robin's Wish, the widow of the late actor Robin Williams talks about the disease found in his brain, she says, stole him from her.
That was really the first time a lot of people ever heard about Lewy Body Dementia. While it's very misunderstood and often misdiagnosed, it's actually the second leading cause of dementia.
A local doctor is working on a couple of groundbreaking Alzheimer's studies that could someday give all of us the option of unlocking an early diagnosis.
Debbie Seplow lost her husband, Andy, 16 months ago.
"My husband was a great man," Seplow said.
She says the long goodbye was really more like 16 years when the first symptoms of Lewy Body Dementia started showing up.
"We were going to retire, live life, travel, visit grandchildren, and all that was robbed of us by a disease we didn't bring into our lives. It just attacked us unknowingly, and there was absolutely nothing we could do to stop it," Seplow said.
Odd behavior, depression, then outright hallucinations.
"He had a hallucination for a long time that there was an ape living in our backyard," Seplow said. "He said, 'I'm not going outside with an ape!' And I said, 'Well, I don't know how he got there, so you know how he got there?' He'd say, 'I think he must have climbed over the wall," Seplow said.
Dr. Pierre Tariot has been working to find a cure and treatment for the last 40 years.
"It's a progressive degenerative brain disease that's kind of partway between Alzheimer's and Parkinson's disease," Tariot said.
He says BAI's new Lewy Body Dementia Center in Tucson will be a game-changer, connecting families and caregivers, so they know they're not alone.
"Sometimes talking turkey to other families about what you are living with like, 'Oh my gosh, so that worked or didn't work for us, but try this,' that kind of coaching and support is actually as much a part of the disease management as the medication part," Tariot said.
He went through the same thing when he lost his mother after 30 years with Parkinson's.
"We needed a team. We couldn't do it by ourselves. We could not," Tariot said.
He says diseases that attack your brain are so much more than physical, making caregiving extremely difficult and emotional for loved ones.
"You are living in the moment, watching your husband disappear, the man you love, the man that took care of you to carry your children who was your rock and best friend - would physically be across the dining table from me, but I didn't know this person," Seplow said.
Debbie says support groups through BAI taught her how to give herself some grace and release the guilt in asking for help so she could embrace the good days when they came.
"You have to take care of yourself, and remember, your loved one would want that for you!" Seplow said.
That $10,000,000 charitable investment comes from the family of the late J. Orin Edson, who built the iconic Bayliner boating company, will also help BAI improve their 24/7 telephone support system. It will also set up a telementoring program to help primary care doctors with dementia and Alzheimer's diagnosis and train healthcare coaches for families in our community.
To learn more, click here.
Nicole Crites & Arizona's Family have helped host the annual Walk to end Alzheimer's for the last several years raising money & awareness for the Alzheimer's Association Desert Southwest Chapter.
Because of the pandemic, it's a virtual event this year; you can click here to join our virtual team or make a donation.