Woman credits early diagnosis, specialized care for successful life with Parkinson’s disease

Dianne Steinert’s symptoms started in 2020. She was introduced to Jason L. Crowell, M.D., who diagnosed her with Parkinson’s disease in 2022 and set a specialized care plan in motion.

Is there anything quite like an afternoon walk with your dog?

In Dianne Steinert’s case, it’s a walk with her daughter’s dog, Emmy, a black-and-white border collie, who’s bustling with energy as the two strut around their New Albany, Indiana, neighborhood.

Dianne’s walking well, easily placing one foot in front of the other as she lengthens and tightens Emmy’s leash. At first glance, you’d never guess she was living with Parkinson’s disease, a condition that, at one point, jeopardized Dianne’s ability to walk altogether.

Her symptoms started in 2020, when she experienced what she calls a frozen left shoulder, a condition that happens when the shoulder capsule thickens and tightens around the joint, restricting its movement. For Dianne, it meant she couldn’t swing her arm when she walked, throwing off her balance.

Then she began to experience tremors.

“As time went on, other people started to notice the twitching in my hand,” Dianne said. “And they would say something about, ‘Hey, are you okay, your hand?’ So then I thought there’s something more going on.”

She saw her doctor, consulted with family and friends and eventually was referred to Norton Neuroscience Institute, where she was introduced to Jason L. Crowell, M.D., MPA, a neurologist and movement disorders specialist.

In February 2022, Dr. Crowell diagnosed Dianne with Parkinson’s disease.

“It was not the diagnosis I wanted to hear, but it was an answer,” Dianne said. “[It was] a lot of emotions, because of the fear of the unknown. You don’t know how it’s going to be, how you’re going to progress. I’ve got kids that are in their 20s. One day, I hope to have grandchildren. I want to be the cool grandmother.

“I’m to that age where I still want to live a full life. Then, you have the fear of, ‘Wow, is this something that I’m going to pass on to my children and grandchildren?’ Somebody saying the words, ‘You have Parkinson’s disease,’ is just a feeling that’s hard to explain.”

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Parkinson’s disease is a neurological condition that causes symptoms related to movement, including slowness, shaking, stiffness, and difficulty with balance.

Symptoms usually begin gradually and worsen over time. As the disease progresses, people may have difficulty walking and talking. They also may have cognitive and behavioral changes, sleep issues, depression, and fatigue. As a result, seeing a doctor who specializes in Parkinson’s can help patients better understand and address their symptoms.

“Some people have already kind of been tipped off as to a possible diagnosis of Parkinson’s,” Dr. Crowell said. “But pretty routinely, I’ll see folks who have this constellation of symptoms, and I think it can be helpful in those situations to explain that, ‘You’ve got all these different symptoms, but I believe they may be explained by a single, unifying diagnosis.’ This can often help patients understand why they have been experiencing a variety of symptoms, many of which may seem to be unrelated.”

Dianne began treatment that included a combination of medication and exercise to manage her symptoms. Dr. Crowell sent her to physical therapy at Cressman Neurological Rehabilitation, where the specially trained team offered Dianne physical, occupational and speech therapies.

“I tell people sometimes Parkinson’s is like trying to run the car with no gas in the tank,” Dr. Crowell said. “They want to go, but it is difficult to move. And so, if you can find that combination of medicine and therapy, a real team of professionals who can address it, people can really respond and flourish in terms of their mobility.”

“I feel like the early diagnosis, not letting this go on and going to a specialist who specializes in Parkinson’s made a big difference in my diagnosis,” Dianne said.

Her treatment and therapy helped with balance issues that made it difficult to walk

“I would kind of stumble and catch myself. And I couldn’t keep up,” Dianne said. “Therapy changed that.”

Dianne’s care, while sounding routine, is actually quite unlike what many Americans receive. A new study, published in the journal npj Parkinson’s Disease, found that in 2019, 40% of Medicare beneficiaries living with Parkinson’s — nearly 250,000 Americans — didn’t see a neurologist for management of Parkinson’s disease. The study also found that 80% to 90% of these patients didn’t meet with a physical, occupational or speech therapist.

The study also showed gaps in care were worse for Asian, Black, Hispanic and Native American patients, as well as women and rural Americans. It showed only 5% of Black, Hispanic and Native American patients saw a movement disorders neurologist, compared with about 10% of white patients.

“We do know there is an access problem,” Dr. Crowell said. “We know there’s a shortage of neurologists throughout the country. But I also think there’s a lack of recognition of the symptoms, because Parkinson’s can affect people in such a variety of ways. And so, unless you’re really thinking about it, it can be difficult to see that all of these symptoms might be related to one another.”

As for Dianne, she’s no longer in outpatient physical therapy, but continues to play an active role in her own recovery. She’s continued to perform the exercises she learned at therapy while also going to the gym consistently with her daughter. She’s even started to play golf again.

She credits her progress to an early diagnosis and the tailored care she received at Norton Neuroscience Institute. “Life-changing” is how she described being under the care of a specialist.

“To realize the stiffness, and what exercise can do, it makes you much more self-aware,” Dianne said. “It definitely changed my life for the better. I couldn’t thank Dr. Crowell and the team enough.”

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