LIHUE — Five years ago, James White was in the darkest period of his life.
When he found out he was diagnosed with Parkinson’s disease, White fell into a deep depression and felt the Parkinson’s begin to slowly take over his life.
“Parkinson’s is never going away, it will always get worse,” White said. “Sometimes you have a good day, then a bad day. It’s very stressful not knowing what’s going to come next. Sometimes you have to accept defeat those days. Parkinson’s won today, but you have to have that mindset to go back and beat it again the next day.”
When he lived in Jacksonville, Fla., White was part of a Parkinson’s support group that helped him battle through his depression.
When he moved to Kauai two and a half years ago, he was thankful to find a group he could turn to for help.
“Depression is a big part of having Parkinson’s. When you’re isolated by yourself, you slip deeper into depression. When you come to these support meetings, you’re enlightened. You’re not alone,” White said.
The Hawaii Parkinson’s Association’s Kauai support group was started by Susan Storm and her late husband, Jerry. After her husband’s death a year and a half ago, Storm let White take over responsibility for the group.
Although she is no longer in charge of organizing meetings or special guest speakers, Storm still attends every meeting to support caregivers.
“It’s such a good support group for each other for when someone’s not feeling well. It’s even a good place for for caregivers to come together and just have lunch and just complain to each other and let our hair down,” Storm said. “That’s so valuable — emotionally and psychologically.”
On the last Tuesday of each month, the group meets from 5 to 6:30 p.m. in the activity room in Regency at Puakea Retirement & Assisted Living. In the group’s past meeting, neurologist Dr. Melvin Yee, was guest speaker.
Yee said it is important to help educate those with Parkinson’s on Kauai due because resources for the disease are scarce on the island.
“Parkinson’s is the second-most common neurodegenerative disease after Alzheimer’s, so it’s a very prominent problem, especially here on Kauai,” Yee said.
A major problem among Kauai’s Parkinson’s population is that there is only one neurologist on island and no movement-disorder specialists, a necessity for Parkinson’s patients.
“Anytime that my husband needed care, we had to fly to either San Diego or to Oahu to see a specialist,” Storm said. “And it’s not even just the money. You’re traveling with someone who is very ill. So the whole experience of going through security and being on the airplane and staying at a hotel can be very draining.”
White is able to travel by himself to see a specialist. For now.
“But as the disease progresses, I can’t fly by myself,” he said.
When White moved to Kauai, he made sure there was a neurologist on island, but overlooked the fact that there wasn’t a movement-disorder specialist here. And when he originally contacted the specialist on Honolulu, the doctor wasn’t taking patients.
With nowhere else in the state or nearby to turn to, White returned home.
“I had to go all the way to the East Coast to see a specialist, but my insurance wouldn’t cover it because it was out of state,” White said. “My goal in life now is to get a movement disorder-specialist here, twice a year.”
Info: James White at (904) 321-6928 or email firstname.lastname@example.org.