“I first got diagnosed with anxiety, second depression, third severe sleep apnea. Finally, doctors thought I had delirium tremens, which is what alcoholics get when they go through severe withdrawal,” Carey said.
Carey was put on medication after medication, and nothing worked. After nearly two years, he saw a neurologist in June.
“The neurologist told me to walk down the hallway looked me square in the eye and said, ‘you have Parkinson’s,’” he said. “It was hard. I went to the doctor by myself.”
The brain specialist diagnosed Carey based on the way he walked. His right arm didn’t swing back and forth like normal and he shuffled his feet, two tell-tale signs of the disorder. The only way to really confirm someone has Parkinson’s is to give them the drug Carbidopa-Levodopa.
“I took the medicine and within 30 minutes, my shaking went away. I felt like a whole new person,” Carey said.
Since then, Carey has been exercising and getting involved with the Parkinson’s Association.
Alzheimer’s is the number one disease that affects the brain, but very few people name Parkinson’s as the second most devastating neurological disorder.
The Parkinson’s Association of Southern California, which is based in San Diego, estimates 15,000 to 18,000 San Diegans are diagnosed with the disease, and several thousand are likely living with it and don’t know it.
“It can be definitely more devastating for people who are younger,” said Jerry Henberger, executive director for the Association.
Parkinson’s affects the part of the brain called the “basal ganglia” which releases dopamine and help control movement. As that deteriorates, people loose muscle control, movement and vocal cords.
Exercise, according to doctors, is one of the best tools to fight Parkinson’s because it releases dopamine, which then helps rebuild those circuits in the brain.
Carey hasn’t missed a workout since his diagnosis and said working out has literally saved his life.
Henberger, along with his colleagues at the Association and scientists at places like Scripps Health, are working on the 60,000 square foot, first-of-its-kind center in the country. The center will combine physical therapy, mental health counseling, support groups and education for movement disorder patients. The center will be called “Minds in Motion” and is set to open in five years.
The capital campaign will kick off April 12 at the Parkinson’s Association’s annual 5k Walk/Run.
“There are medical groups that have all of those components available, but that’s seeing your doctor, this is living your life,” Henberger said.
A million Americans are living with Parkinson’s and more than four million have it across the globe. The government predicts that number will double in 25 years and more young people will also have YOPD. It’s the same disease actor Michael J. Fox was diagnosed with 20 years ago.
Henberger said while there is no cure for the disease, it does seem to be caused by genetics and/or environmental toxins.
“There is a huge constituent of patients who served in Vietnam and were exposed to Agent Orange,” Henberger said. “They are now being diagnosed with Parkinson’s.”
Carey is one of the 5 percent of people younger than 40 with the disease and he knows a tough future lies ahead.
“I went to a YOPD meeting recently and cried all the way home. To see a woman in her 40s who needs walker to walk, or a guy who has a pump on his waist that sends dopamine into his system or to have another guy who has trouble speaking, it’s a reality,” he said.
That reality is not discouraging him. He is trying to raise $15,000 for the Parkinson’s 5k Walk/Run April 12 with the hopes one day, there will be a cure.