Hopeful -- but "Jumping the Gun"??? -- Sept. 7, 20

The headline of this article seems to jump the gun a bit, don't you think?

Parkinson's surgery slows disease's effects

I mean, that's the purpose of this clinical trial we're in -- to determine, first of all, the safety and tolerability of DBS in early PD, THEN to see whether or not having DBS earlier rather than later slows down the progression of the disease.

We hope that's the case, but that's why we're in this study.

Personally, I don't think medical reporters do a very good job writing about this disease.

http://www.kansas.com/news/state/story/164065.html

Quote :

LAWRENCE - A flip through Linda Davis' checkbook gives a glimpse of her recent ups and downs with Parkinson's disease.

Starting in May, Davis underwent a series of four surgeries -- two of them in her brain -- in hopes of delaying the progression of Parkinson's.

Judging from the handwriting in her checkbook -- which has transformed in the past three months from a messy scrawl to a neat cursive -- the surgery worked.

Though the handwriting is not quite as clear as it was 11 years ago before Davis was diagnosed with Parkinson's -- a disease that affects a person's control of movement -- it's at least legible.

Davis, 59, now is also able to spend nights alone and can resume painting, one of her favorite crafts.

"She's got her life back," her sister Pat Michaelis said.

The surgical procedures, known as deep brain stimulation, implanted electrodes into Davis' brain that emit electrical pulses to interfere with abnormal neural activity. The device, similar to a pacemaker, runs off battery packs that were placed in Davis' chest.

The procedure received Food and Drug Administration approval in 2002 as a treatment for Parkinson's. The brain surgery also can be used to treat people with other diseases that cause uncontrolled movements, such as tremors.

For the past few years, as her Parkinson's disease worsened, Davis teetered between being unable to stop moving when her medicine was working and not being able to move at all when the medicine wore off.

The surgery offers the hope of reducing the amount of medicine Davis needs.

Davis was diagnosed in 1996 after she and her husband, Bob, had returned from a trip to New York to celebrate their 25th wedding anniversary.

She was tired, had a tremor in her left hand and didn't swing both her arms as she walked. She went to a local neurologist, who told her within 10 minutes the problem was Parkinson's.

Parkinson's is a disorder of the brain's nervous system and progressively intensifies, resulting in tremors, rigidity in some muscles and difficulty with walking, movement and coordination. The disease is caused by the death of nerve cells in a part of the brain that controls movement.

Parkinson's disease does not have a cure, but medicines can treat the symptoms. However, those medicines have severe side effects.

For Davis -- as her Parkinson's has advanced over 11 years -- more and more medicine was needed.

And with the increased dosage came dyskinesias, meaning Davis was unable to sit still.

"It was really extreme," Michaelis said. "In my mind, I equated it almost to a fish out of water, flopping around. She couldn't control movements."

Also, there was an increase in the times when -- suddenly -- the medicine would stop working. In an instant, Davis would be unable to move.

The disease and the medication also made it difficult to do household chores, such as cooking dinner, and enjoy some of her favorite crafts.

"Daily life got to be a struggle," Michaelis said.

Dr. Jules Nazzaro, the neurosurgeon at Kansas University Medical Center who performed Davis' surgery, said deep brain stimulation won't cure Davis' Parkinson's disease. But it will set it back at least five years.

"In all honesty, people don't know the mechanism for why this works," he said.

Deep brain stimulation surgery comes with risks -- bleeding in the brain, infection, stroke and even death. Also, patients could see an onset or worsening of existing depression.

But once Davis decided to have the surgery, she didn't worry about the risks. "My off-time increased enough that I decided to go ahead and do it," she said.

So far, Davis has reduced the medicine she uses by 70 percent. She can remain still, and the wigglelike movements have nearly disappeared. They come back when she is stressed, tired or excited but aren't as extreme as before.

And since the surgery, she hasn't once had a moment where the medicine unexpectedly stopped working and she couldn't move.

Quoting from a long list of "turtle wisdom" she has collected over the years, Davis said she has learned how to be "comfortable in your own shell," especially while her hair is still growing out from surgery.

She couples that with "you only make progress if you stick out your neck."