MARYSVILLE For several years after her symptoms appeared, various doctors had a hard time putting together a diagnosis for Marysville resident Jenny Picaso Webster.
One or two suggested fibromyalgia, while another, according to Webster, strongly insisted her problem was all in her head. With a touch of anger in her voice, she describes fibromyalgia most basically, a neuropsychiatric illness as a basket where doctors throw patients when they dont know whats going on.
When finally Webster received a diagnosis she could accept, she said that moment was bittersweet at best. How could anyone possibly feel grateful upon learning they have a debilitating illness such as Parkinsons disease?
Still, being told it was all in my head made me think I was crazy, Webster said. At the very least, she added the diagnosis provided a label and some explanation of what was happing to her. A search for more of an explanation led to plenty of Internet research and eventually to a support group known as People Living with Parkinsons.
Webster is now the secretary and director of fundraising for the international, certified non-profit organization which boasts about 1,500 members worldwide. Slated for March 30, Pancakes for Parkinsons will be the first local fundraiser for the group.
Webster said social interaction among Parkinsons patients, even if its on-line or over the phone, is a key to surviving the illness.
You have to be able to share your experiences, it means so much, she said.
Webster said a Parkinsons patient founded People Living with Parkinsons in 2004. Organization administrators receive no salaries, so all donations go directly into supporting the group or into research.
Basically, Parkinsons attacks the central nervous system, damaging motor skills and possibly a patients ability to speak. The most common symptoms almost seem slightly schizophrenic: muscle rigidity that leads to uncontrollable tremors or shaking.
You loose a lot of strength, youre not as able to multitask as well, Webster said.
Of course, what causes Parkinsons isnt fully understood, but Webster said doctors generally point to a deficiency in dopamine production. Dopamine is a hormone produced in the brain that helps control muscle function. While generally not fatal in and of itself, Parkinsons can be extremely debilitating and generally grows worse as time passes.
For her part, Webster was forced to quit her manufacturing job seven years ago. Among other tasks, she operated a forklift and felt she was becoming a safety threat to herself and others. Further, she often felt too fatigued to put in a full days work.
Nowadays, Webster seems to get around fairly well, though it takes her a few minutes to rise off the couch in her living room, her legs having stiffened up on her. At the same time, Webster notes she suffers, as do many with Parkinsons disease, from an extreme case of restless leg syndrome. For that reason and others, for those with Parkinsons, a good nights sleep is often hard to come by.
While there is no cure for Parkinsons, there are treatments, most commonly the drug levodopa, or L-dopa, which is transformed by the body into dopamine. Still, Webster said the drug is more often than not a tricky one. The right dosage is tough to find and constantly needs adjustment.
They call Parkinsons a designer disease for a reason, Webster said, meaning every patient reacts differently and often requires specialized treatments. Youre on a constant roller coaster of drugs.
Now 49, Webster is among the roughly 5 percent of Parkinsons patients who suffer from early onset of the disease, which generally strikes persons age 60 or older. Webster hasnt worked for seven years, even though doctors didnt diagnose her with Parkinsons until 2004. She now spends most of her time looking after son Christopher, who suffers from Downs syndrome.
I want to live to be here for him for the rest of his life, Webster said.
Webster and her husband Dan have another grown son and have lived in Marysville for 24 years.