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Decade of walks: Wife wears cape inspired by husband who had younger-onset Alzheimer’s

Oct. 4, 2022 Updated Tue., Oct. 4, 2022 at 8:19 a.m.

Claudia Bjorklund will keep her stride Saturday – walking again as she has done for a decade to support a Spokane Alzheimer’s Association fundraiser. She’ll also wear a cape that tells a story, in step with the memory of her husband, who had what is now called younger-onset Alzheimer’s disease.

Diagnosed at age 55 in 2009, Randy Bjorklund with his wife ran a cabinet shop. He died in January 2019 at 64, and although Alzheimer’s had progressed, his death was caused by a late-occurring, aggressive brain tumor, said Claudia Bjorklund. For most years, he walked with her in the Walk to End Alzheimer’s, along with family and friends. Mostly, the team went by the name, Bjorkolution.

It was Randy’s idea eventually to create a cape from all the annual walk T-shirts, and for him to wear it at the events. It suited him. Caudia Bjorklund described Randy as a jovial, “kind of goofy” guy who never lost his amiable personality. Her sister quilted up the shirts into his cape, which he last wore in 2018. She has worn it the past three years.

Since 2012, the Bjorklund team has raised more than $86,500. Her goal is to reach $100,000. The average number of years that people do the fundraiser walk is four, but Bjorklund said her reason to continue is clear.

“It’s important because the walk keeps bringing to the forefront that research really needs to get it together and make some progress on, No. 1 preventing the disease, No. 2 earlier diagnosis, and No. 3 slowing the progression of the disease,” she said.

Soon after her husband’s diagnosis, the couple began attending local Alzheimer’s support groups, which helped both of them. Randy started early as a volunteer at the Providence Adult Day Health program, now called ElderPlace.

The site offers care for elderly and impaired adults to receive rehabilitation services, nursing care, health monitoring and a chance to socialize. Randy, a military veteran, clicked with many of the center’s clients who enjoyed his fun-loving personality, Claudia Bjorklund said.

“Everybody loved Randy,” she said, while attributing a bulk of the donations over the years as coming from people who remember him fondly.

“Randy was the poster child for Alzheimer’s. We were on TV. He was on a magazine cover. We had other interviews on the internet. He was very handsome, very cordial and he put a face on Alzheimer’s that most people would not have expected.

“He was the face of our business; we had a custom cabinet shop, and everybody loved dealing with Randy. He was so talented, pleasant and goofy – and people were just devastated when he was diagnosed the week he turned 55.” Alzheimer’s disease is considered to be younger-onset if it affects a person under 65.

More than 6 million Americans have Alzheimer’s disease, a leading cause of death in the U.S., according to the Alzheimer’s Association. In Washington, more than 120,000 people have the disease and it affects about 297,000 caregivers.

On Sept. 26, news broke about a new experimental Alzheimer’s drug indicating it slowed cognitive and functional decline by 27% in a closely watched clinical trial, increasing the therapy’s chance for approval as soon as early next year.

Japanese drugmaker Eisai and its American partner, Biogen, in a news release said the slowing of deterioration, compared with a placebo, was “highly statistically significant.” They said the drug, called lecanemab, had met the primary and secondary goals of the 18-month late-stage study. The trial results have not undergone peer review.

The news contrasted that of a rollout last year of another drug, marketed as Aduhelm, sponsored by the two companies. Aduhelm, for which the data was conflicting, was approved by the Food and Drug Administration, but Medicare refused to cover it broadly, and the drug collapsed in the marketplace.

Bjorklund said Randy participated in earlier research and trials that also seemed promising. There are sometimes frustrations regarding the stops and starts of trials for patients and families affected by Alzheimer’s, she said.

“One thing that’s been really frustrating for me is not long after Randy was diagnosed, there was a trial going on called SNIFF,” she said. They traveled to Tacoma, the site of the trial. “It was insulin that was reformulated to be a nasal sniff. It made so much of a difference for Randy; there was no question that he didn’t have the placebo.”

But in trying to get her husband into the next phase, she said some federal actions delayed the trial’s progress for about 18 months. That’s too long if you have the disease, she said. Bjorklund then discovered she could get a pharmacy formulation to match the trial product.

Her husband continued to use the nasal formulation, and that helped him until 2018, she said.

She’s not so sure about a new drug slowing cognitive and functional decline by only 27%.

“I find it very frustrating, because nothing is going to work for everybody, but if you can improve the quality of life for a person with Alzheimer’s and their family, don’t quit it.”

The Mayo Clinic said one large study investigated the effect of nasal insulin on people with mild cognitive impairment or mild Alzheimer’s and found no benefits from the drug. But other studies did find that nasal insulin might improve some aspects of memory and daily activity. Researchers are still trying to understand if and how insulin might be used to manage Alzheimer’s disease and other dementias, the clinic said.

Overall, Bjorklund said the Alzheimer’s Association – in using fundraised donations – contributes significantly to research to find solutions. She stays involved because the walk helps toward such research.

Bjorklund said in recent years, she expected a bit of a dip in the team’s fundraising, but the support continues.

She and her husband celebrated 40 years of marriage, with three adult children. Randy got to meet all of his seven grandchildren, including two sets of twins. Claudia Bjorklund watches the contributions come in as people remember her husband and his easy-going nature.

“A Providence magazine quoted him, ‘You have to give up a lot of things that you’re used to doing. The more you fight it, the tougher it is. I’m going to make the best of it.’ And that’s what he did. He just went with the flow.”

When she told him that he had to become a client at the same Providence center where he’d volunteered, he also took that in stride. “His comment was, ‘Well, I want to make it as easy on you as possible and easy on me too.’ That was him. He was just incredible.”

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