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When Parkinson's Meds Wear Off: A Personal Look

Posted Aug 24 2008 1:49pm
WILLIAM KOLLER, MD: Parkinson disease is clinical symptoms consisting of slowness, that is slowness of movement, stiffness of the muscles, difficultly walking, tremor, which some people refer to as shakiness, rhythmic movements of the limbs, and sometimes difficulty with balance.

ROGER MAHEY: When I heard the diagnosis of Parkinson's disease, I thought, "That's what they think. I'm going to beat it." I was wrong, but I wasn't completely wrong.

ANNOUNCER: At 88, writer Roger Mahey is meeting that goal despite the fact that he was diagnosed with Parkinson disease five years ago.

DEE EDWARD SILVER, MD: What happens is, the cells deep inside the brain don't make dopamine because they're starting to die or they become dysfunctional.

ROGER MAHEY: The indications were minor reactions, trembling hands, dropping things, dropping money at the supermarket, inability to speak as clearly as I once could

ANNOUNCER: Science has developed ways to combat this disease starting with a medication containing levodopa.

WILLIAM KOLLER, MD: The gold standard for treatment of Parkinson disease is levodopa-containing compounds. And it's an amazingly simple concept. You don't have enough dopamine in the brain. We give the chemical L-dopa that goes into the brain. It's converted to dopamine. We replace the deficiency, and the symptoms get better.

ROGER MAHEY: Normally, when my medication's working, I can almost be a normal human being.

ANNOUNCER: But the length of time the L-dopa works can decrease as the disease progresses.

ROGER MAHEY: At first, the Sinemet took care of me completely. Those days are gone. I'm not all right all day anytime anymore. It's a little frustrating.

WILLIAM KOLLER, MD: When the drug's working, which we call the on state, you could be almost normal, and people would say, "Wow, nothing wrong with that person at all," and then half an hour later when the drug stops working, which we call the off state, the patient may be shaking profoundly, not able to get out of a chair, not able to feed themselves.

DEE EDWARD SILVER, MD: An important consideration that patients are really concerned about is the fact that they have sudden loss of the ability to do their activities of daily living. That sudden change, usually at the end of the dose, before the next dose, is called wearing off.

ANNOUNCER: Recognizing this issue is the first step in dealing with it.

WILLIAM KOLLER, MD: Most commonly, a patient will say, "I take my medicine. It takes 25 minutes to kick in. Then I'm good for two and a half hours. Then the medicine wears off, and my symptoms reemerge." So for many patients, it can be quite predictable.

On the other hand, there are some patients who the changing of state between on and off can be very unpredictable. It can be very rapid, as well.

DEE EDWARD SILVER, MD: They have to be able to recognize that they're getting worse, their tremor is getting worse, they're slowing down, they can't get out of the chair as easily, feed themselves as easily or they can't walk as well.

ANNOUNCER: Today patients like roger use new combination medications which increase L-dopa's effectiveness.

These new combination medications also lessen a side effect associated with L-dopa use known as dyskinesias. Dyskinesias are involuntary muscle spasms.

ROGER MAHEY: At very worst, I will fling an arm out in an uncoordinated, unreasoning way.

DEE EDWARD SILVER, MD: Theoretically, it looks as if that a drug like Stalevo, given early, in a manner in which you give continuous stimulation to the patient and maintain less off time or less wearing off that we should be able to theoretically delay the development of these dyskinesias

ROGER MAHEY: The important difference is that I had more good hours during the day, and they weren't terminated and interrupted by unpleasant side effects.

And I maintain a reasonably normal life and get good exercise at the same time. One thing I try to maintain is my contacts with the theater and the opera and musical events and to go where crowds of people are enjoying themselves and enjoying each other.

I think that there is a mental obstacle to accepting the fact that you're going to be afflicted by something as devastating as Parkinson's. I think it's a worthwhile battle, and I'm going to keep on doing it.

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