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Monday, December 31, 2018

Parkinson's: With work, there is hope after the diagnosis

James Neal | Enid News & Eagle  Dec 30, 2018  


Ronald Taylor


ENID, Okla. — When Ronald Taylor, 83, first started having trouble moving, he thought maybe he’d had a stroke. It turned out, he was suffering symptoms related to Parkinson’s disease, starting a long road in rehabilitation that’s led him back to mobility and self-sufficiency.
According to the Parkinson’s Foundation, about 60,000 Americans are diagnosed with Parkinson’s each year, and by 2020 almost one million Americans will be living with the disease.
Parkinson’s disease is a slowly-progressing neurodegenerative disease that causes tremors, limb rigidity, balance, gait and speech problems.
Ronald, who’s lived with his wife of 63 years, Shirley, in Enid since the couple came here with the Air Force in 1978, said he didn’t think something like Parkinson’s was possible for him.
But, gradually worsening problems getting in and out of his chair and walking came to a head in September when Shirley traveled to Dallas to visit their daughter.
Somehow, Shirley knew something was wrong with Ronald in her absence.
“The Lord woke me up that Saturday morning and said, ‘You need to go back to Enid,’” Shirley said.
She came back to Enid at about 6 p.m. the following day and found Ronald was nearly immobile in his chair.
Ronald had suffered a stroke two years earlier, and Shirley said she feared the outcome this time was going to be worse.
“I thought we were going to be making funeral arrangements,” Shirley said. “It was horrible.”
Ronald was rushed to the emergency room, where a stroke was ruled out. But, no other immediate causes were found for his trouble moving and his speech, which had dropped to a soft whisper.
“They couldn’t figure out anything that was wrong with him,” Shirley said.
After a neurologist was called in to consult on the case, it was determined Ronald was suffering from Parkinson’s symptoms.
“It was a shock, at first,” Ronald said. “As far as I was concerned I didn’t have anything like that. It was just old age taking its toll.”
Dr. Joseph Knapik, staff neurologist and director of inpatient rehabilitation at St. Mary’s Regional Medical Center, said Parkinson’s disease is caused by a deficiency in the brain of L-DOPA.
L-DOPA is an amino acid that plays a crucial role in the neurotransmitters dopamine, norepinephrine and epinephrine.
When not enough L-DOPA is present, disruptions in neurotransmissions cause resting tremors, lack of movement in parts of the body, a shuffling gait, balance problems, falls, slowing thought processes and speech disorders — particularly whispering speech.
In general, what causes Park­inson’s to develop remains somewhat of a mystery, Knapik said.
“We don’t fully understand all the genetics of this,” he said. “In general this is a sporadic disease. It tends to be seen in the older age population, but there is no specific reason we see they get this.”
He said it’s been hypothesized the brain loses the ability to develop L-DOPA as it ages, but that hasn’t been proven, nor is it understood why it presents in some older people and not others.
Parkinson’s typically shows up in patients in their 60s to 80s, Knapik said.
He said there is no blood test or imaging to detect Parkinson’s, and there are no known risk factors or preventive measures.
“There’s not a test to detect Parkinson’s,” Knapik said, “so usually neurologists are the ones involved in this and in taking care of these patients.”
In its earliest stages, Knapik said treatment involves adjusting the patient mentally and physically to life with Parkinson’s.
“Early on in the course it’s about educating the patient,” Knapik said, “and getting them to know what this really is.”
As the disorder progresses, Knapik said medications may be used to stimulate or supplement L-DOPA production in the brain. And finally, as physical symptoms worsen, intensive physical therapy is used to retrain the brain and body for movement and speech.
Ronald started that physical therapy while under inpatient care at St. Mary’s, after his initial diagnosis in September.
When he started out, he had to move with a walker, needed assistance getting out of a chair and had lost much of the dexterity in his hands. When he spoke at what he thought was a normal tone, others could barely hear him. If he spoke loud enough for others to hear him, he said it felt like he was shouting.
The physical therapy team got to work with him right away, in long courses of speech and motor exercises over two weeks. Walking, turning, getting out of a chair, getting dressed — it all had to be retrained.
Shirley said she had no doubt from the beginning Ronald would pull through it — with some divine help.
“God is bigger than any mountain we encounter,” Shirley said. “I know where my help comes from, and it comes from the Lord.”
Ronald drew on his old military discipline, and dug into the physical therapy with determination.
“I enjoyed it, I really did,” Ronald said. “I tried to make the best of it.”
After two weeks of rehabilitation at the hospital, Ronald was released for four weeks of outpatient rehab at St. Mary’s Center for Rehabilitation, 2123 W. Willow.
Nikki Haws, physical therapist assistant at St. Mary’s Center for Rehabilitation, said she was eager to work with Ronald after recently being certified in Lee Silverman Voice Treatment (LSVT) BIG, a program designed to improve gait, balance and motor skills in Parkinson’s patients.
“The treatment improves walking, self-care and other tasks by helping people ‘recalibrate’ how they perceive their movements with what others actually see,” according to the LSVT website. “It also teaches them how and when to apply extra effort to produce bigger motions – more like the movements of everyone around them.”
Haws said repetitive exercises help Parkinson’s patients break out of the narrowing confines of their disease.
“Their world has gotten small,” Haws said. “They have small movements and reduced speed, but they feel like they’re doing what they did 20 years ago.”
Through repetition, Haws said the exercises improve the brain’s neuroplasticity — the brain’s ability to “rewire” itself — and help patients “get comfortable outside that small world.”
Over four weeks, Haws worked Ronald through exercises focused on getting dressed, tying his own shoes and being able to get up from a chair or bed, then walking, turning and progressive exercises to improve gait and balance.
Haws said the LSVT program covers the spectrum of Parkinson’s patients from those who are just starting to have tremors to those already confined to a wheelchair. But, the earlier a patient starts, she said, the better.
“Early intervention with Parkinson’s is the best,” Haws said. “Let’s not wait until they’re having falls to get them help.”
Once physical therapy starts, there is no end point. Haws said, to be successful, a Parkinson’s patient will have to make a routine of exercises, twice a day every day, for the rest of their life.
Ronald said he’s committed to continuing that process, which already has brought from a walker and needing help dressing back to self-sufficiency.
“I really feel much better,” Ronald said, “and I’m really appreciative of everyone who was involved in it.”
In addition to their ongoing physical therapy, support also is available for Parkinson’s patients through the Parkinson Foundation of Oklahoma, which offers about 30 support groups around the state, including one which meets monthly in Enid.
Bruce McIntyre, Parkinson Foundation of Oklahoma executive director, said it’s important for Parkinson’s patients and their families to stay connected, educated and social.
“It’s very common when people are diagnosed, both as patients and as caregivers, they tend to withdraw and isolate themselves,” McIntyre said. “But, the connection with other people is very crucial, and can take them from a downward spiral to an upward spiral.”
Support groups offer a social network of friends, and also keep Parkinson’s patients and caregivers up-to-date on therapy options.
“The people who continue to learn with the disease tend to do better,” McIntyre said. “Learning about new options helps alleviate unnecessary fears.”
Parkinson Foundation of Oklahoma hosts a support group at 2 p.m. the first Friday of each month at Enid Senior Center, 202 W. Walnut.
For anyone who is experiencing symptoms they suspect may be related to Parkinson’s, Dr. Knapik advised they start by seeing their primary care physician.
And, for those who are diagnosed with Parkinson’s, Knapik said there is life and hope after the diagnosis.
“This a disease of decades,” Knapik said. “There are people who have been in my clinic for upwards of 20 years with this disease and they’re still up and going well.
“These are treatable diseases,” Knapik concluded. “There is management for this, both medicines and therapy, and we can help these people.”
Ronald Taylor does exercise with Kikki Haw, physical therapist assistant
https://www.enidnews.com/news/lifestyles/parkinson-s-with-work-there-is-hope-after-the-diagnosis/article_7b785a3e-140a-54b6-9ee0-d929ca3c5c75.html

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