Scott and Lisa Norton always felt very fortunate. Three years ago, just days before celebrating their 25th wedding anniversary, the Scarborough couple were first faced with their biggest hurdle. After being referred to a specialist for what Scott thought to be a pinched nerve in his left shoulder, he came home with a diagnosis that would change his life. At only 48 years old, he had Parkinson’s disease.

“He told me right then and there. It was quite a blow,” Scott Norton said about receiving the diagnosis on his first visit to a specialist.

According to Lillian Scenna, of the Parkinson’s Information and Referral Center in Falmouth, Norton is one of 1.5 million Americans and an estimated 7,000 Mainers with the illness, which kills nerve cells in the brain, causing impaired muscle function. Though the majority of patients are diagnosed after the age of 65, 15 percent are diagnosed before they turn 50 and some as early as 30. Like many neurological disorders, there is no blood test to prove someone has Parkinson’s. Specialists must determine visually whether a patient has the disease.

When symptoms progress significantly, patients may be in need of a constant caregiver. On Nov. 2, the Maine Parkinson Society is holding a silent and live auction to raise money to help patients pay for respite care, which is outside assistance that provides temporary relief for caregivers.

This year’s auction chairwoman, Jamie Crain of South Portland, became involved with the auction when her father, Rick Dobson, also of South Portland, was diagnosed with Parkinson’s three years ago at the age of 58.

“We didn’t know anything about Parkinson’s until he was diagnosed,” said Crain, 30. “All of a sudden, it changes your whole future.”

Though Crain said she didn’t know what to expect, by talking with other families who were dealing with the same experience, she learned a lot. She said her father, who is the president of Consumer Credit Counseling Services of Maine, still works full-time and isn’t even taking medication.

According to Scenna, the most difficult part for most patients is an inability to communicate their needs.

“There’s a very intelligent person in there,” Scenna said. Due to symptoms like tremors, slow movement and stiffness of the muscles, patients have a hard time communicating both with speech and facial expressions.

Though Norton was shocked to receive his initial diagnosis, his wife said, after they knew what was wrong, things started to add up. Soon, they noticed he was moving slower and talking softer. Scott Norton said he felt a very soft tremor in his left hand. He had developed a “Parkinson’s mask,” meaning his face was stiff and expressionless. Now, with medication, he can smile again.

“After he was diagnosed, it was, ‘Oh, that makes sense,'” Lisa Norton said about noticing symptoms.

Still, Scott Norton said it took about two months for the diagnosis to sink in for him.

“As we got comfortable with the diagnosis – just being able to say it – we started telling friends,” Lisa Norton said. Though she knows some Parkinson’s patients who prefer to keep their condition under wraps, Norton said everyone her husband knows is aware of his illness, and the support has been incredible. As Lisa Norton prepares to travel, she knows friends will be by their Scarborough home constantly checking up on him and seeing whether there is anything they can do to help.

But Scott Norton is far from dependent. The truck-part salesman, now 51, continues to work. Though he stays at home more, he has become a great househusband, according to his wife, who boasts about his laundry skills.

Lisa Norton has taken on a new task, as well. For the past year and a half, Norton, who works in advertising and sales for the Portland Radio Group, has served on the board of the Maine Parkinson Society.

Though Norton said she was initially obsessive about reading up on and keeping track of Parkinson’s research, she has learned to sit back and enjoy life as it comes. Now, she is hoping to help educate others about the illness, which, she believes, with the baby boomer generation getting into their 50s and 60s, will be a lot more prevalent in the country in the coming years.

Scenna said that though the illness is most common in older people, one of the least known facts about the disease is that people can be diagnosed as early as 30.

“When people think of Parkinson’s, they think of grandparents, Muhammed Ali and Michael J. Fox,” Lisa Norton said.

Scenna said having someone in the public eye who developed Parkinson’s at a young age, like Fox, has been instrumental in getting the word out.

The rate of progression of the disease varies from person to person, but can advance to the point where a patient is bound to a wheelchair. According to Scenna, patients don’t die from Parkinson’s disease, they die with Parkinson’s disease. However, complications from the symptoms can lead to death.

“When you hear somebody has this condition, you fast forward,” Norton said.

Norton worries about her 18-year-old son, Nicholas, too. Though it is unknown exactly how people develop Parkinson’s, there is sometimes, but rarely, a family history of the illness, as well as a loose association with drinking well water. Norton said her family has stopped drinking the tap water at their home as a precaution. However, she said, even if there is a hereditary component, she knows in 20 years, when her son might be at risk, treatment will have advanced significantly.

“I see hope on the horizon,” Scenna said. “Just in the past 10 years, we’ve learned so much about Parkinson’s.”

Scenna remembers when her grandfather was diagnosed with the disease, there was only one medication he could take.

“If he were alive today, he wold have had a host of options,” she said.

For Scott Norton, the most difficult part of the disease is the constant reminder that he has it.

“It’s always on your mind, everything you do,” he said. His wife said she has worked hard not to let it consume her life, though it has certainly changed it significantly.

“It really puts into perspective, without sounding cliche, to live for now,” she said. “Live each day.”

A Closer Look

An Evening of Hope, a benefit auction for the Maine Parkinson Society, will be held Friday, Nov. 2, 5:30-9 p.m. at The Woodlands Club, Falmouth. For tickets, go to www.maineparkinsonsociety.org or call 1-800-832-4116.

Scott and Lisa Norton of Scarborough discuss coping with Scott’s Parkinson’s Disease. Scott was diagnosed three years ago at the age of 48. Only 15 percent of Parkinson’s patients are diagnosed before they turn 50.


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