Parkinson's Disease Through a Caregiver's Eyes

Medically Reviewed On: June 13, 2008

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.

GUISLA SCHAFSTELLAR: Sometimes I get into the act a little bit too soon. When he's not at that point yet where he would like to have help and then I get a curt response from him and I know to back off. And so I automatically ask, "Would you like for me to do this or that?" And then, yeah, he says, "Okay," and then I do it.

HELMUT SCHAFSTELLAR: I'm not this old, ancient guy getting dependent. I can still hold my own. I don't reject her help. But I also try to make this as easy as possible, because she is not getting younger, either.

ANNOUNCER: The physical challenges are not the only problems that the caregiver must be prepared to deal with. Depression can accompany the disease.

HELMUT SCHAFSTELLAR: I can see myself easily getting depressed. My wife is a very happy soul. She doesn't let me linger on that too long.

GUISLA SCHAFSTELLAR: Helmut is not an ebullient, outgoing kind of a person; he internalizes things more and is very quiet. And so there were concerns there that I had; how he would deal with it, but he deal with it pretty well and still does.

ANNOUNCER: While the patient's needs can seem paramount, the needs of the caregiver are equally important.

MATTHEW B. STERN, MD: They're every bit as much the patient as their spouse or partner is. And that they have to recognize the needs that they have. We, for example, have a social worker in house who deals with caregivers as much as she deals with patients.

There's a network of support groups throughout the country that caregivers can get involved with. So there are resources out there

ANNOUNCER: So far Guisla has taken her new role in stride.

GUISLA SCHAFSTELLAR: I'm a person who is automatically doing things that I see need to be done. So it all is in a day's - day's work, you know?

MATTHEW B. STERN, MD: There can't help but be strains on her, but I think she's coped magnificently. And, in fact, is in, to no small extent, responsible for Helmut's sense of well-being.

ANNOUNCER: Still it's a delicate balance that the Schafstellars must maintain.

GUISLA SCHAFSTELLAR: My role as a caregiver will probably increase. And since we don't have a crystal ball and we can't look into the future, we just take it day by day.

Keep a sense of humor. With a sense of humor, you can deal with almost anything.