Parkinson's Disease Through a... Video Transcript

Participants

Abraham Leiberman M.D., Guisla Schafstell , Helmut Schafstell , Matthew B. Stern MD

Summary

People living with Parkinson's disease face many hurdles, but they don't do it alone. Listen to how one couple is coping with the ups and downs of everyday life with Parkinson's disease.

Webcast Transcript

HELMUT SCHAFSTELLAR: Nobody recognized it. The motion was not quite the way it normally would be.

GUISLA SCHAFSTELLAR: So we went to our local hospital and saw the neurologist and he said that it might be Parkinson's.

MATTHEW B. STERN, MD: In the very early stages of Parkinson's disease, it actually can be difficult to diagnose. It's not until the more classic symptoms emerge that most doctors recognize things like the resting tremor, the slowness of movement, the stooped posture, the shuffling gait.

ANNOUNCER: Thirteen years ago Helmut Schafstellar and his wife Guisla learned Helmut had Parkinson disease.

GUISLA SCHAFSTELLAR: To me, it was just something that people get just like any other disease and the object was just to cope with it.

ANNOUNCER: The Schafstellars found an expert in Dr. Matthew Stern.

MATTHEW B. STERN, MD: When we see a patient today, I often paint a fairly optimistic picture, because many patients who are on the right combination of medications can function at a very high level. That means they're working, they're active, they're engaging in athletics for many, many, many years.

ANNOUNCER: Today medications containing l-dopa help control Parkinson's symptoms

GUISLA SCHAFSTELLAR: The medications have very much kept his self-esteem up and going. Without it, I don't think he would be in the mental frame of mind that he is still in. Being upbeat, having a good sense of humor and tackling things that he enjoys doing.

ANNOUNCER: While the medications have been effective, there are possible side effects.

MATTHEW B. STERN, MD: These are troubling involuntary movements, where patients will develop hyperactive movements in response to l-dopa or another phenomenon we refer to as the wearing-off effect. Patients will feel a good response for a period of time, the response will run out and the patient will turn off and develop their symptoms again.

One of the strategies in dealing with patients who have wearing-off effects or these motor fluctuations has been to try and develop ways of smoothing out the delivery of l-dopa. And one way of accomplishing that is to try and interfere with its metabolism in the body and we know, for example, that there are several enzymes that break down levodopa in the body and we've developed compounds that can actually interfere with that process.

ANNOUNCER: Helmut, a retired engineer, leads an active life with his wife Guisla.

HELMUT SCHAFSTELLAR: I try to ignore the damn thing. I still play tennis three times a week. We do some bicycle, weather permitting, once a week. I can do just about anything I need to do, except it takes ten times as long.

ANNOUNCER: Sometimes Helmut needs help, so Guisla has had to adapt too. As caregiver she assists with a button, a meal, whatever needs to be done.

GUISLA SCHAFSTELLAR: If we, for instance, choose the buffet, then I carry whatever food he would like to have.

HELMUT SCHAFSTELLAR: It's very amazing. Some of the unexpected things, all of a sudden, hey, man, that is hard. My wife is a terrific support. She doesn't let me fail. She is even catering to my impatience.

ANNOUNCER: Being a caregiver can be difficult.

MATTHEW B. STERN, MD: They're dealing with their spouse or partner who is becoming progressively more impaired in terms of dealing with routine activities of daily living. So just the physical demands on a caregiver can really sometimes be a terrific burden.

ANNOUNCER: Assessing how much help to provide and how much help to accept is an evolving process.

HELMUT SCHAFSTELLAR: She is very, very, helpful. Helpful sometimes, I say, helpful to a fault.