Lawrence woman learning how to cope with early-onset Alzheimer’s disease

photo by: Kathy Hanks

Steve and Pam Major are pictured in their Lawrence backyard on Sept. 23, 2019. Pam Major has early-onset Alzheimer's disease

At first, Pam Major justified her forgetfulness and the errors made at work as typical symptoms of growing older.

But she was only 61, and she wasn’t the only one aware of her confusion. Her family and colleagues were seeing a change in the woman who had been — as she said — “a smart cookie.”

At the urging of a colleague, she underwent a neuropsychological evaluation, and in February she was diagnosed with early-onset Alzheimer’s disease.

“It’s called early-onset for those diagnosed before 65, and it progresses much faster,” said Major, now 62. “While most are diagnosed when they are older, it can strike those in their early 40s or 50s.”

Alzheimer’s disease, a degenerative neurological disorder that manifests itself as memory loss and other cognitive impairments, is the sixth most common cause of death in America, according to Juliette B. Bradley, communications director for the Alzheimer’s Association of America’s Heart of America chapter. 5.8 million Americans have Alzheimer’s, Bradley said, but only about 200,000 of them are under 65.

But Major says the worrisome diagnosis isn’t slowing her down. She swims every day at the Lawrence Indoor Aquatic Center, keeps a journal and spends plenty of time with her grandkids.

And this weekend, she and her support group in Topeka will be participating in the nationwide Walk to End Alzheimer’s. The annual rallies, which raise funds for the Alzheimer’s Association, will take place in hundreds of communities across the United States. Lawrence’s will be held at 9 a.m. Sunday in South Park, 1141 Massachusetts St.

• • •

Before the diagnosis, Major and her husband Steve moved from Massachusetts to Lawrence in April 2018 to be closer to their grandchildren. She had been the administrator of a surgical center and took a new position in the medical staff office at Topeka’s Stormont Vail Hospital in August 2018. Her husband continued his work from home.

Major thought her new job would be a breeze.

“But I noticed three months into the job I was having problems with spreadsheets,” she said. “It seemed so much harder to do very simple things.”

A department head who had lost a loved one to Alzheimer’s wondered if something cognitive was happening. Pam took her advice and saw her primary care doctor. He reassured her it was probably the stress of the move, and starting a new job.

However, to be certain, he sent her to a neurologist, who ultimately diagnosed her with Alzheimer’s.

• • •

Major was depressed after getting the diagnosis, thinking of all the losses she was facing. After the diagnosis, for instance, she had to leave her job at Stormont Vail.

But now she’s been trying to focus on making good memories instead — such as spending time with her grandchildren.

“I remember doing great things with my grandparents,” she said. “I want my grandkids to remember doing those things with me. Not remembering the grandma I will look like at the end.”

There are some sacrifices Major has had to make even in that part of her life, though. While she is still able to drive, she has had to accept the fact that she can no longer drive alone with the younger grandchildren, she said, because they are too young to help with directions if she loses track of where they’re going.

In the past seven months since the diagnosis, Steve Major said he’s seen a difference in his wife’s acuity and sharpness at different times of the day. Pam is an early riser, he said, and she’s at her best when she wakes up in the morning. By early afternoon, though, she is often waning.

Pam is on several medications to help manage the symptoms of Alzheimer’s. But her neurologist also gave her a toolbox of things that will help her maintain her cognitive skills as best she can. One of those is maintaining a structure in her life, including lots of physical activity. She now swims every day at the Lawrence Indoor Aquatic Center. Another tool that’s helped her with her memory is keeping a journal.

The couple also found a church when they first moved to town, and the congregation has offered support.

“We have a very good social network, and that helps,” Steve said.

He admitted he has had some trouble getting on the same page as his wife.

“She lives with it every minute of every day,” Steve said. “She’ll think it’s at XYZ point and I am back here thinking ‘she’s sharp, she’s clever and everything is fine.’ For me to catch up with her is a challenge.”

• • •

A fearless woman who once skydived, Pam now finds it difficult to be the one needing help.

“Those have been some of the most difficult conversations we have had — when she feels like I’ve got a burden that I need to carry and it’s her fault,” Steve said. “(It’s about) getting her to realize — better or worse, richer or poorer — we signed up for this, and if the shoe was on the other foot she would take care of me really well.”

The couple attends a support group in Topeka for those in the early stages of the disease. There are separate groups for those living with memory loss and for their partners and caregivers.

“The caregivers are crying because they don’t get to cry at other times,” Steve said. “This is a place where people can understand what they are going through and commiserate. It’s a respite for them.”

It has been important to be open about the disease, Pam said, because she wants people to understand why she forgets.

She has been referred to the Mayo Clinic, where she will be seen by specialists in October.

“We’re excited to go there,” she said. If she can be part of a trial that might find a way to slow down the disease, she is on board.

“Try it on me,” she said.

The Walk to End Alzheimer’s in South Park starts at 9 a.m. Sunday, with registration beginning at 8 a.m. Lawrence. To learn more about the walk, go to alzwalklawrence.org.

To learn more about the signs of Alzheimer’s, go to alz.org. A 24/7 helpline is available at 800-272-3900.

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