Counting their blessings
December 24, 2011
GLENWOOD SPRINGS – Mary Noone is about as tough as they come after living through an experience that would break the spirits of most people and sour their outlook on life.
Noone was stricken with Parkinson’s disease 20 years ago at age 35. She and her husband, Bob, were in the prime of their lives and deeply woven into the fabric that makes Glenwood Springs a great community. They founded and organized the summer jazz series. Mary volunteered at the public schools and helped teach soccer.
The first symptoms of Parkinson’s was a consistent tremor in her right hand and arm. It hit when their youngest child, a daughter, was still in diapers. The Noones visited the acclaimed Mayo Clinic in Rochester, Minn., early in the disease’s progression and didn’t like what they heard.
The worst-case scenario, doctors told them, was that Mary would be bedridden within two years and in need of round-the-clock care.
“We said, ‘We have a lot to do in the next two years,'” Bob said. One of their first acts was to take their oldest children out of school for a family drive down to Baja.
“We continued for the next 20 years to act irresponsibly,” Bob said with a laugh.
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Mary is tough because she was determined not to let the disease prevent her from doing what she wanted, even though it was sometimes easier said than done. Parkinson’s is unrelenting, she said, and threatens to rob you of hope that you can get better.
For 10 years, she said, she dealt fairly well with the disease, thanks in large part to a “cocktail” of various drugs. She learned to mask some of the symptoms, but her physical condition progressively got worse. Eventually, she couldn’t converse – “I couldn’t make my tongue work,” she said. She sometimes couldn’t walk across their bedroom, let alone a busy city street. Doing the simplest tasks would take the most intense concentration. Walking backward was easier than walking forward. And, as the fun-loving couple learned, walking in a conga line also was good for Mary.
But the thrashing eventually got to the point where Mary couldn’t go to restaurants for fear of knocking plates, glasses and silverware across the room.
“I would be sitting on my hands in the old days, writhing,” Noone said. “It’s like the Monty Python disease.”
Bob said he would have to put Mary into a full nelson during the worst of her thrashing to prevent her from injuring herself or anyone else.
Mary, 55, stayed tough for the sake of her kids and because she is a lover of life. Her patience and faith paid off. She and Bob first learned of a procedure called deep brain stimulation (DBS) on a television news show. A short time later, their friend Dwayne Romero told them that Davis Phinney, a former elite professional bicycle racer from Boulder, has undergone the surgery. He went from using a wheelchair to getting on the bike for century rides, Bob said.
Romero gave Mary a telephone number for Phinney. They spoke, and she became determined to explore the possibility of DBS.
She made the call in 2008. After extensive testing, doctors determined that she was a candidate for the procedure. Doctors warned her and Bob that brain surgery always presents a risk and that Mary could emerge in worse shape, not better.
They forged ahead Feb. 2, 2009. Bob said in layman’s terms, the medical team essentially maps what a person’s brain does to carry out various motor functions, then hot-wire a mechanical system to mimic the processes. A battery pack with data was implanted just below Mary’s collarbone. Wires send information to her brain.
A company called Medtronic, along with clinicians and researchers, developed DBS. Medtronic’s information says a surgically implanted medical device, similar to a cardiac pacemaker, delivers mild electrical pulses to precisely targeted areas of the brain involved in motor control and muscle function.
“Electrical stimulation of these areas normalizes the brain circuits that control movements,” the company’s material states.
Mary’s biggest fear going into surgery was losing the creativity that made her such a talented painter. She showed one of her paintings to the medical team at the Anschutz Medical Campus in Aurora and challenged them to allow her to maintain that standard. (She has.)
The surgery itself restored many of Mary’s motor skills, temporarily, as doctors explained that it would. Then the Parkinson’s symptoms return, again as expected. About one month after the surgery, doctors tested out Mary, the bionic woman. They activated one side of her brain and saw the twitching immediately stop. Then they activated the other side.
DBS isn’t a cure, but it mitigates the symptoms.
Bob, who was in the room when the system was activated, said it was like the flicking of a light switch: “That moment that the light switch went on, it was jaw to the floor,” he said.
Mary is tough, and she recounts her ordeal with ease, but describing her thoughts when the system was activated understandably brings her to tears.
“It was a resurrection. It was really, really amazing,” she said.
Symptoms of Parkinson’s disease no longer are detectable. Mary is hiking again, and she loves being able to converse. She is painting and being a different kind of mom than her kids knew for a major share of their lives. She and Bob plan to ski soon for the first time in years.
She isn’t invited to Parkinson’s support groups anymore, but Noone is reaching out to people who suffer from the disease to urge them to look into DBS. She said she learned during her ordeal that only a small percentage of people with Parkinson’s qualify for the surgery. As the techniques advance, she is hopeful more people will be eligible.
About 1.5 million people in the U.S. and 10 million worldwide have Parkinson’s Disease, according to the Davis Phinney Foundation. Noone said that a surprising number of people in the Roaring Fork Valley have the disease. One neurologist alone works with 45 patients, Noone said.
Price is another barrier to DBS treatment. The procedure cost about $500,000. Replacing the battery pack was $99,000.
Despite the hurdles, it’s worth looking into, because it can be a life-changer, according to Noone.
“It’s an amazing new lease on life,” she said.
Bob added: “We just embrace life so much more knowing it can be taken away tomorrow.”