Fighting Parkinson’s: Keep active; be positive; don’t fall in Walmart

Karen Avery doesn’t remember much from the end of 2020 or the beginning of 2021. Christmas and New Year’s Day vanished.

Some moments during that time, however, are burned into her memory. Like feeling desperately sick and going to the emergency room. Or being diagnosed with COVID-19 and told it was uncertain how the virus would affect Parkinson’s disease patients like her.

Then there was the day after the COVID-19 diagnosis, when Karen spent six hours sprawled on her bathroom linoleum, unable to stand, get on her hands and knees or reach her ringing phone until her worried son arrived and called 911. She’ll never forget that helpless feeling.

“They thought I was dying,” Karen said. “I felt like I was dying, too.”

The potentially lethal combination of the virus, side effects from its vaccine and her Parkinson’s disease literally floored the then-77-year-old retiree from small-town Warrenton, Missouri. 

She endured a weeks-long hospital stay and then seven months at the outpatient SSM Health Day Institute at Warrenton, where Karen spent several grueling hours daily with physical, occupational and speech therapists.

She couldn’t move without a walker and needed constant supervision when she first stepped into the center. By the time she “graduated,” Karen walked without assistance, drove short distances and once again lived on her own. 

Four years later, Karen is still plugging along, living life with Parkinson’s and living it fully, with a cheerful attitude and an armful of wisdom pearls at the ready.

“I’m 81. I know I’m not going to live a whole lot longer,” she said. “But that’s all right. I just don’t want to be a burden until then.”

Learning about – and living with – Parkinson’s disease

The first signs were subtle – so subtle Karen didn’t realize her hands trembled until friends mentioned it.

A dozen years ago, she was diagnosed with Parkinson’s disease, a progressive, degenerative brain condition which disrupts signals between the brain and body, causing tremors, stiffness, walking and balance issues. Approximately six million people worldwide and one million Americans are living with the disease, which can be slowed through exercise but currently has no cure.

With medicine and movement, Karen has kept her symptoms subdued. It was a different story in 2020, however, when a new neurologist eliminated her medication, assuming incorrectly it made her sick. That decision, and contracting COVID-19, delivered a mighty punch.

“There are a lot of things that can trigger Parkinson’s symptoms. Illness can. Anxiety can as well,” said Physical Therapist Rose Babcock, who assists in leading Select Medical’s nationwide Parkinson’s educational programs. “Emotional and environmental factors can be triggering and make symptoms worse.”

Frequent movement and a positive attitude, two concepts Karen embraces, can help slow the progression of symptoms and make living with Parkinson’s better. 

“If you sit back and let it take over, it will take over,” Karen said. “It’s gonna take over eventually, but you can prolong it. It doesn’t have to be so fast.”

For most of those seven months at the Day Institute in 2021, Karen worked with Physical Therapist Kelsey Montgomery, who joined the center in March 2021 and hadn’t consistently treated someone with Parkinson’s before. They concentrated on Karen’s gait, movement quality, feet shuffling. And they bonded. 

“Honestly, she cares about me. I care about her,” Kelsey said. “We have really connected over these last four years.”

A greater awareness of Parkinson’s disease

It’s the second-most-common neurodegenerative disorder in the United States, trailing only Alzheimer’s. Direct costs to treat Parkinson’s annually is $14 billion, according to the National Institute of Neurological Disorders and Stroke. 

That figure is expected to skyrocket in the next 15 years as the number of Parkinson’s patients is projected to double to roughly two million Americans by 2040 due to an aging population, improved testing and a clearer understanding of the disease.

April is Parkinson’s Disease Awareness Month, and public comprehension of the illness also continues to grow. Two faces of the disease emerged in the late-1900s: Champion boxer Muhammad Ali, who was first diagnosed in 1984 and lived with Parkinson’s until his death in 2016; and actor Michael J. Fox, now 63, who publicly disclosed his diagnosis at age 29. In 2000, he created the Michael J. Fox Foundation for Parkinson’s Research, which has raised more than $2 billion since its inception. 

“I think people listen to these famous people and it does help to propel awareness forward,” Rose said. “All of that money is going to research, and now there are better medications, better tests and better treatments for people living with Parkinson’s. That has been invaluable.”

Parkinson’s awareness has received a recent boost with the emergence of the Apple TV+ hit “Shrinking,” which features Hollywood megastar Harrison Ford, 82, portraying Paul Rhoades, a psychologist who has the disease.

The revelation of Rhoades’ illness – and the depth to which Ford portrays the still-working, still-dating, still-wisecracking character – offers another glimpse into the lives of patients. 

“That show has definitely helped propel Parkinson’s into the mainstream. I love that show,” Rose said. “My dad had Parkinson’s, and every time I watch that show, and I see Harrison Ford, it reminds me so much of my dad. (Ford) is very good with some of the features of Parkinson’s.”

The driving force: Independence

Karen lives four miles from town in a house built by her late husband 52 years ago. She doesn’t want to leave it, though she understands one day she might have to. 

She has a small SUV with a backup camera that she drives to church, the grocery store, therapy appointments and houses of friends who live in town. Her son handles the longer drives.

“My one sister, she said, ‘You know, you’re going to have to make that decision, to stop driving,’” Karen recalled. “And I said, ‘Well, I’m not making it this weekend. So, let’s just forget about that right now.’”

Karen jokes she drives like a “typical, old lady.” Slowly, steadily, cautiously. Her tremors are mild, her instincts are good and, although her legs get tired when she stands for an extended period, she’s fine when she sits. 

In evaluating Karen, Kelsey said there’s nothing to prevent her from driving short distances safely. Cognitively, she is sharp. Physically, she can handle the vehicle. Mentally, it’s a blessing.

“Doing all these social things is helping her,” Kelsey said. “As long as we can keep her physical abilities up, she can continue these social activities and, hopefully, maintain where we are.”

Tuning up to not tire out

Called the “dental model” because it is similar to regularly scheduled teeth cleanings, those diagnosed with Parkinson’s are urged to undergo an evaluation every six months to confirm their symptoms haven’t worsened and their exercise plans are still viable. Oftentimes, they’ll go through a shorter, intense round of therapy after the evaluation.

Karen needs her “tune-up,” as she calls it, twice a year. Otherwise, her tremors intensify, her body stiffens and her legs feel like lead.

“My kids can tell when I need to go back for my tune-up, too,” she said. “I’ll do that for a couple months and I’ll come home and I’ll be doing good again.”

She spends more than five hours per day, three days a week, at the center during her tune-up. Three hours are for therapy: Walking around an oval, going up and down steps, picking up small items with her hands. The rest is spent in the Day Institute’s dayroom with staff-selected activities, like playing card games, interacting with other patients or riding an exercise bike.

“I am one tired puppy when I get home,” Karen said. “But it’s worth it, because I see results.”

When she’s not tuning up, Karen visits the center twice per month to attend an exercise class Kelsey created a year ago for patients with movement disorders.

That interaction is critical, Kelsey said. Not just for Karen, but for others rehabilitating at the center. Some have Parkinson’s. Some have had strokes. Some suffer from chronic ailments. They all become part of Karen’s world.

“She is always a bright light to the other patients, cheering on other patients, motivating them,” Kelsey said. “When she’s here for therapy, sometimes at the end of exercise class, I leave a little bit of time and do a little support group. And she tends to almost lead it for me, which is outstanding. I’ll ask one question and I won’t have to talk for the next 30 minutes.”

Heavy hearts and lifting up

Parkinson’s doesn’t affect only the brain and body; it can burden the spirit, too. Being limited physically can cause a major strain mentally and emotionally. Parkinson’s patients can become withdrawn – due to fatigue, lack of mobility or embarrassment.

“Addressing that mental-health component can be super helpful for a patient,” Rose said. “It can help improve their participation, their access to care, their willingness to get that support.”

The reverse is also true. Difficult mental health situations can heighten Parkinson’s symptoms. When she is nervous or worried, Karen’s hand tremors are more noticeable.

And when she is grief-stricken – like she was in May 2023, when her 15-year-old grandson was killed in a car accident – the symptoms can be particularly pronounced and obliterate her motivation. The death of Evan, a high school quarterback, rocked a tight-knit community.

“It has been so devastating, and that, emotionally, has really stymied me in doing stuff,” Karen said. “That was an additional thing to having Parkinson’s. That, emotionally, absolutely wiped me out.”

Karen was in the process of attending the center for a tune-up when her grandson died. When she returned to the Day Institute a few weeks later, she spoke with Kelsey.

“She was pretty emotional. I got emotional, too,” Kelsey said. “I think she knows it affects her physical ability and so she does come in for a tune-up around that time every year now.”

The emotional support from Kelsey, Occupational Therapist Olivia Halbrook and other staff members is an inspirational bonus.

“I can’t say enough or brag enough on those girls where I take my therapy,” she said.

Simple advice: Keep moving, stay positive, don’t fall in Walmart

Karen is careful when distilling advice to others with Parkinson’s because every case is unique. But she’s a big believer in maintaining activity and a positive outlook.

Admittedly, she has her down days. And her sedentary days, when harsh Missouri winters turn a trip to the mailbox into an adventure. She tries to snap out of those down periods quickly.

Her third piece of advice might be a little too specific, but she’s lived it.

“You definitely don’t want to go down in a Walmart,” she said. “That’s not pleasant.”

Occasionally while walking, Karen’s legs have given out and she’s plopped to the ground. She usually leans on a cart while shopping to provide support, but one time, while in line at Walmart, her legs had had enough. She dropped directly to the floor. She was fine; her pride was bruised.

It became especially embarrassing when a woman behind Karen began yelling for help and Walmart employees came running to her aid. She explained she wasn’t injured or scared. She didn’t slip. There’d be no pending lawsuit. 

Regardless, an unwanted scene was made.

It was a tough moment, but Karen spun it. She wanted to show all those concerned employees and customers that this 81-year-old with a neurodegenerative condition keeps fighting. 

“I told them all, ‘Do not worry,’” Karen said. “And then I drove myself home.”

If you or someone you love has been diagnosed with Parkinson’s disease, request an appointment today and let our experts help you stay active and independent like Karen. 

Our team and SSM Health Day Institute are part of the Select Medical Outpatient Division family of brands.