Five years with Parkinson’s

Jim White of Puhi thought he was going crazy.

“I was in my 40s, had good health, but had lost my sense of taste,” White said. “During early stages, I lost my sense of smell, had insomnia, constipation, tremor under stress and anxiety attacks which I thought were heart issues. For more than a year, doctors ruled out causes for the symptoms I had, looking for a brain tumors, Lyme disease, stroke, thyroid and more.”

One day at work, he asked to be sent home, disputing a suggestion that he take a nap because he looked pretty bad.

“As it turned out, I had an appointment with a neurologist,” White said. “And after more than a year of testing and visiting doctors, I was finally diagnosed with Parkinson’s disease. This diagnosis gave me relief after all this time of fighting. How can you fight when you don’t know the enemy?”

April is Parkinson’s Disease Awareness Month.

Parkinson’s disease is a chronic and progressive movement disorder, which means symptoms worsen over time. There are nearly 1 million people in the United States living with Parkinson’s. The cause is unknown and there is no cure. However, there are treatment options such as medication and surgery to manage symptoms.

“I’m five years into my trek with PD,” White said. “I have been recently tasked with managing our Kauai Parkinson’s support group and I have a lot to learn about helping those in our group. For Parkinson’s Disease Month, there are two issues which are on the top of my list.”

The first is awareness because one out of 300 will be diagnosed with Parkinson’s. The second is the need for a visiting movement disorder specialist, who can help not only Parkinson’s sufferers, but also those with strokes, multiple sclerosis and Lou Gehrig’s disease.

“It moves me when I observe a caregiver’s effort just getting a loved one to one of our meetings,” White said. “The effort to get them to a specialist in Honolulu is a hundred-fold without the expense of airline tickets, hotels and rental cars.”

White said Susan Storm, who recently lost her husband, is committed to making life for the next generation of caregivers on Kauai less stressful.

“Jerry, Susan’s husband, had deep brain surgery, one of the treatments for Parkinson’s,” White said. “This is a very invasive procedure where you are awake throughout the procedure. Susan stayed with him during the procedure. His DBS controller went haywire and she had to rush him to Honolulu for an adjustment by a movement disorder specialist. Do you realize there is only one in the entire state?”

White said as far as new treatments, there is nothing truly new that will be available soon.

“The drug companies keep re-inventing the same drug that has been used for 45 years,” White said.

Sinemet (carbidopa-levodopa) is, after all these years, still the gold standard drug for treating Parkinson’s disease, he said. Long-term use of Sinemet leads to side effects, one of which is a condition called dyskinesia, a Greek term for “bad movements.”

“Michael J. Fox displays this condition,” White said. “It is not from Parkinson’s, but from the meds. As doses are increased, sudden wearing off can leave the PD sufferer frozen until a dose of Sinemet is taken.”

White said Parkinson’s changed his life.

“My mother, 5,000 miles away, still worries about her 56-year-old son with Parkinson’s,” White said. “Parkinson’s has taken a lot from me — my profession was a corporate pilot for the rich and famous, and soaring for hours in sailplanes. I’m also a commercially-rated glider pilot.”

The Parkinson’s disease support group usually meets on the last Tuesday of the month from 5 to 6:30 p.m. at the Regency at Puakea activity room.

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