Parkinson’s patients may have a new choice
Glenwood Springs, CO Colorado
Mary Noone, 55, remembers when something as simple as walking through the park, or having a conversation, was an impossible feat.
Not anymore, after the Glenwood Springs woman underwent a relatively new procedure called deep brain stimulation (DBS) surgery. Now Noone, who was diagnosed with Parkinson’s disease nearly 20 years go, and others who suffer from similar movement disorders, can see dramatic benefits from the treatment.
For Noone, the decision was between taking nearly 20 pills a day, or undergoing brain surgery to have tiny electrodes embedded in her brain.
The electrodes connect to thin wires that would run out of her head and into a small generator pack. The electrodes send electrical signals into the brain, helping lessen or eliminate tremors associated with disorders such as Parkinson’s.
As with all candidates for the surgery, Noone had stopped responding to medicine.
“I was shaking constantly, which made me nothing but skin and bones,” she said. “I remember my daughter and I were sitting on a bench watching people go by, and I thought, ‘Just being able to walk – I’ll never be able to do that.’ And now I can.”
In 2008, at the suggestion of doctors, Noone decided to do the surgery. The surgery took three procedures, and she said the results were dramatic.
“It was really amazing – words can’t describe it,” she said. “It’s still a learning process, but some people now don’t even know I have Parkinson’s.”
Noone, who was a painter before the disease progressed, has been able to paint again. While her speech is slightly slow, she’s now able to speak normally.
“Now I can have conversation – before I would avoid social situations because it was so uncomfortable, and it took too much effort to make myself understood,” she said.
“After the surgery, it was great. Once I was in the grocery store with my daughter. She walked right by me and didn’t even recognize me because she’s so used to me jumping around with my knees knocking and everything.”
How deep brain stimulation works
Many patients have success like Noone’s, said Vail-based neurologist Gary Weiss. He has half a dozen patients in the area who have undergone the surgery, he said.
“We’ve had patients be able to go back to golfing and skiing and be able to live their life again,” he said. “We’ve had others who couldn’t even feed themselves before and are 90 percent of normal now after the surgery.”
The procedure has been around for 10 to 15 years, but only in the past few years has the technique been improved enough that it has become more common. Weiss said now the surgery time has been cut down to one to two hours, and MRI guidance allows surgeons to be more precise. The result, he said, is a much higher success rate and much lower risk.
DBS surgery can also treat dystonia, which causes muscles to involuntarily contract, and central tremors, a disorder in which shaking increases with activity. It has also been used to treat depression and other psychiatric disorders, but those treatments are still more experimental, Weiss said.
After surgery, patients usually need to follow up with a doctor to adjust the settings of the electrodes – each person’s settings are individualized, and someone may require anywhere from a couple to monthly adjustments.
And while many people are greatly helped by the procedure, the surgery by no means eliminates the symptoms of the disease.
“Parkinson’s is a progressive disease. DBS just helps the tremors, but the other problems keep getting worse,” Weiss said, also pointing out that there are always inherent risks.
“DBS hasn’t been out that long, so we’ve yet to see how long it would work. And brain surgery is always a risk. Even though techniques are getting better and resulting in high success rates and lower risks, it’s always a chance we don’t take unless we absolutely need to.”
Not a cure, just a treatment
Vail resident Dick Gustafson, 76, can testify to both the negative and positive effects of the surgery. He was diagnosed with Parkinson’s two and a half years ago after a tremor in his left hand got so severe that he could no longer write.
He had DBS surgery nearly a year ago, and while the surgery helped his hand, he experienced other effects. His speech became more slurred, and he had some trouble with his balance. In March, he fell twice, from what doctors later said were seizures, possibly as a result of the surgery.
The adjustments have been hard on someone self-described as fiercely independent.
Gustafson said that how well he’s able to move and get around depends on the day. He’s glad that he can now sign a check, instead of producing what once were illegible scribbles.
However, the difficulty in speech has been hard – Gustafson was once a speaker, radio personality and local politician. He still hosts a radio show for Radio Free Minturn.
“I’m critical of my speech because I used to make a living with my voice. I did radio shows, and I did seminars. Now, what I hear is not the same as what is inside my head,” he said.
These days, doctors are still treating his symptoms with a combination of adjustments to his generator pack and medication, and he said that since his seizures he’s had to rely heavily on the support of friends and family.
“I can’t say how much I appreciate the help of all the people who have helped me. You can’t understand how significant that is til it happens to you – to be dependent on someone else,” he said.
As far as his surgery, he said he’s still not sure if he’d call it a success.
“Everyone needs to do their own research and decide what’s right for them,” he said. “I can’t emphasize enough that this is a personal disease, and it affects different people in different ways. Everyone should take their own risks.”
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