Ohioan’s online Alzheimer’s support group spreads hope

In the WEST LAFAYETTE — early morning hours before dawn, Rick Phelps sat at his kitchen table in front of his laptop, bleary-eyed and fed up.

It was 4 a.m. on Thanksgiving 2010. Phelps had been diagnosed with early onset Alzheimer’s fivemonths earlier. He was taking his medication (seven pills in the morning, five at night), scouring internet chat rooms and discussion boards for more information about the disease.

His wife, Phyllis, wasworried.

The Alzheimer’s Association, other support networks and neurologists had provided pamphlets with information, but no one had ever asked: What are you going through? How are you?

So that November morning, nearly a decade ago, Phelps clicked open a tab to Facebook.

The rural Ohiomandidn’t want to talk about cures, the latest drug down the road or some conspiracy theory about cognition. Hewanted support for caregivers, advocates, and most importantly, for patients like himself. Memory People was born. The private Facebook group — although nearly everyonewhorequestsmembership is accepted— is dedicatedto“Alzheimer’s/dementia andmemory impairment support and awareness.”

It began with a couple of hundred members.

Almost 10 years later, Phelps said the support network he started at the kitchen table has nearly 23,000 members spanning every continent except Antarctica.

“I’m just a guy ... with dementia,” he said. “I have a lot of confusing days. ... I’m not a genius. I just knew I needed it and I knew people needed that interaction with others.”

The 67-year-old isn’t as active as he once was six or eight years ago. His mantra “While I Still Can” guided him for many years as a patient determined to advocate for fellow patient support and guidance.

Phelps did a couple of speaking engagements for the Alzheimer’s Association. A friend from childhoodhelped the formerEMS and lawenforcement officer write, perform and record a song, “While I Still Can.”

Phelps also has written two self-published books about his experiences with dementia.

“If somebody would’ve toldme15 years ago, ‘You’re gonna write a song and two books,’ Iwould’ve told them theywere out of their head,” he said.

Sitting outside his house in West Lafayette, a village in Coshocton County about 85 miles northeast ofColumbus, Phelps acknowledges that he nowfinds it difficult to read through a few paragraphs without stumbling.

He has good days and bad ones but places his faith in the hands ofMemory People — whose logo is on his denim shirt — and the online support organization’s 12 other administrators.

Leeanne Chames, Phelps’ right-hand woman, essentially runs the organization.

Chames, 56, is a caregiver. Her mother-in-lawwas diagnosed with Alzheimer’s in 2010 and Chames found the Facebook group after seeing Phelps advocate for it on an Alzheimer’s Association message board.

Initially overwhelmed by stories of frustration, pain and suffering, she knew all too well from being a caregiver, Chames left Memory People.

But she ultimately rejoined.

“Over the years, even though you’re facing something really, really difficult, even fatal, you do one of two things: Run away from it or throw yourself completely in it,” she said.

So Chames threw herself into Memory People.

It’s been a constant source of support for Chames, even after her mother-inlawpassed away in September 2012 and her mother was diagnosed with vascular dementia, eventually dying in May 2013.

“When we have reached mission accomplished,” she said, “is when somebody posts on the page and says, ‘My loved one has passed away and I was never really involved much, but I can’t tell youhowmuch this group meant to me and to know I wasn’t alone.’”

That’s only become more important since COVID-19 has stoppedtraditional forms of in-person support groups.

“Memory People is 24/7,” Chames said. “If you post at 2 a.m., we have people in Australia or India, and they can’t fix it, but at least you have someone there to talk to.”

One ofChames’ daughters has a seizure disorder and when she took her daughter to the neurologist around six years ago, Memory People came up.

“He told me, ‘I have all kinds of meds I can do to help your daughter, but I don’t have anything for Alzheimer’s. ... You keep doing what you’re doing because that’s the best thing that we’ve got,’” she said.