Barbara White – Queenie to some – was beyond excited to be chosen as this year’s honoree for the Walk for Memories.
With a red-painted smile brightening her face, she listed off as many joyous adjectives she could think of to express just how she felt: Wonderful. Great. Proud. Honoured.
She’d love to keep the memory forever, but sadly realizes there’s a likely chance that it too may fade.
White has Alzheimer’s.
She was diagnosed with the first stage two and a half years ago.
Her symptoms were not uncommon: forgetting people’s names, missing appointments, repeating things, moodiness. But White, 71, who wasn’t educated in Alzheimer’s, and who already had fibromyalgia, a chronic disorder that causes fatigue and muscle pain, thought it was just the “fibromyalgia fog.” Others cracked it up as old age.
But when a fellow Red Hatter abrasively called out her forgetfulness, asking her why she kept repeating things, what was wrong with her brain, White sought the help of her doctor.
“He tested me… asked me a whole bunch of questions,” she said. “He then told me I had the first stage of Alzheimer’s
“I didn’t even know what Alzheimer’s was.”
Alzheimer’s is a type of dementia that causes loss of memory, judgement and reasoning, as well as changes in behaviour and mood. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks like going to the washroom, bathing and feeding.
In B.C., more than 70,000 are affected by dementia.
White was not ready for the disease to take over. Immediately she sought out local support groups, and began researching the disease on the Internet.
Her husband, Wayne, also joined a support group for caregivers.
“When people look at me, they don’t think anything is wrong with me,” said White.
And then she speaks.
It’s not the symptoms of Alzheimer’s that clue them in, it’s her words, her barefaced advocacy for the disease.
Months into having it, White became a spokesperson for the local Alzheimer’s chapter, she regularly speaks at seniors’ homes, and has even spoken to students at the University of the Fraser Valley who are going into caregiving careers.
“It’s something I am working so hard to try and get a cure for, to try and get enough monies for research,” she said. “There’s not enough money to get a cure for this.”
As soon as White was diagnosed, her doctor prescribed the Exelon patch, a fairly new skincare treatment, that releases medication directly through the skin continuously for 24 hours, and that may improve overall function and cognition.
White believes it’s the patch that has stayed her Alzheimer’s to Stage 1.
“My patch has slowed the progression of my Alzheimer’s,” she said.
But still, it’s not enough.
White has endured more stresses and hardships in her life than most, but through it all, her easy smile and quick sense of humour has been a gateway for happiness.
She has four children, two stepchildren, and 10 grandchildren.
She holds her time with them dear, and doesn’t want to lose those precious memories.
“I really just have to take it day by day and keep doing the things I love,” she said.
This Sunday, White will be walking proud in the Investors Group Walk for Memories. Joining her will be friends from the Red Hat Society and friends from the fibromyalgia support group, and friends from the Alzheimer’s support group – and all others she’s helped brighten the lives of along the way.
The Investors Group Walk for Memories is Sunday, Jan. 26 at the Landing Sports Centre from 2 p.m. to 4 p.m. Registration is at 1 p.m.
For more information call 604-702-4603.