LIHU‘E — There is only one day left in the National Parkinson’s Awareness month, so proclaimed by the U.S. Congress for the first time this year.
And as new as the national designation is, local disease-awareness activists acknowledged that not much data is available on the number of people who suffer from the second-most-common and progressive neurodegenerative disease in the country.
Awareness has come in part by some high-profile sufferers, including former world heavyweight boxing champion Muhammad Ali and actor Michael J. Fox.
Kaua‘i Mayor Bernard Carvalho Jr. presented a county proclamation celebrating the island’s Parkinson’s Action Network to Susan Storm of the Kaua‘i Parkinson’s Support Group Thursday, joining the U.S. Congress in designating April as National Parkinson’s Awareness Month and acknowledging the work of the Kaua‘i group and other volunteers and supporters who work toward improving the quality of life of persons living with Parkinson’s disease.
Parkinson’s disease is the second most common and progressive neurodegenerative disease in the United States and affects the transmission of messages from the brain to the muscles, states the proclamation.
“We don’t have too much data on how many people suffer from the disease yet,” said Storm in a telephone interview.
“But we do know that about 1 percent of the people over 65 suffer from Parkinson’s,” said Storm, who is also the congressional coordinator of the Parkinson’s Action Network.
Symptoms of Parkinson’s disease vary from person to person, and include tremor or involuntary movements, rigidity of muscles, shuffling gait, loss of facial mobility, speech difficulties, impaired balance and deteriorating handwriting.
As these symptoms become more pronounced, patients may have difficulty walking, talking or completing other simple tasks, states the National Institute of Neurological Disorders and Stroke website (www.ninds.nih.gov/).
At present there is no cure for Parkinson’s, but a variety of medications provide dramatic relief from the symptoms, states the website. These drugs combined with therapy can slow or halt the progression of Parkinson’s disease.
“There has been a lot of work done in research and, recently, the (U.S.) Veterans Administration approved funds for veterans who suffer from Parkinson’s,” Storm said. “There is a lot of work being done with Parkinson’s starting from when Michael J. Fox was diagnosed with the disease.”
Parkinson’s disease is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time.
No one can predict which symptoms will affect an individual patient, and the intensity of the symptoms vary from person to person.
Storm said currently scientists are looking for the cause of Parkinson’s, linking the cause to possible exposure to toxic materials that may trigger the disorder.
During National Parkinson’s Awareness Month as approved by the U.S. Senate last month, Storm said the Parkinson’s Action Network commends the support groups and applauds the counseling that are available to help people and family members coping with the impact of Parkinson’s disease.
Storm said the Kaua‘i Parkinson’s Support Group which includes both patients and caregivers meet on the last Tuesday of each month at the Regency at Puakea starting at 5 p.m.
For more information, call Storm at 212-1250, or visit www.ninds.nih.gov/disorders/parkinsons_disease.htm for more information on Parkinson’s disease.
