NeuroTalk Support Groups - Boston Globe article

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A 'Life' of song and struggle
November 4, 2006

Singer Grace Griffith (below) has been known for years on the folk music circuit in the Washington, D.C., area . She also brought Eva Cassidy to the attention of Blix Street Records shortly before Cassidy died of cancer in 1996 at 33. While Cassidy surged to posthumous fame, Griffith's career was short-circuited by her own health crisis. In 1998, Griffth, now 50, was diagnosed with Parkinson's disease, the same illness afflicting actor Michael J. Fox. Tomorrow, seven months after having electrodes implanted in her brain to ease her symptoms, Griffith heads to an American Parkinson Disease Association symposium in Sturbridge. She'll sing from "My Life," her latest CD. We spoke with Griffith by telephone from her home in Accokeek, Md.

IRENE SEGE

Q You recorded "My Life" shortly before your surgery. Why was that important to you?

A It might have been that I didn't come out of the procedure with the same singing ability. I don't know how much longer I'll be able to perform.

Q How's your health now?

A The "off" times are less uncomfortable and less severe. I've been able to cut back on the medications. I have less fatigue. Don't get me wrong. About half the time I'm evidently involved in Parkinson's disease.

Q If we were having this conversation in person instead of over the phone, what would I be seeing?

A I'm sitting here in my chair, looking out the window, and I'm not shaking or bobbing. It's been a long time since I had a period when I was normal. I had begun to forget what it felt like.

Q What do you make of the recent dust-up with Rush Limbaugh and Michael J. Fox?

A It's an example of blatant cruelty on the part of Rush Limbaugh. Insensitivity would be a less harsh word. . . . It was a great inaccuracy, and misunderstanding. Michael J. Fox's movements are more likely a result of his drugs and being able to move at all and not of being off meds. That's the price you pay for being able to move.

Q What's your stand on stem-cell research?

A I believe there are alternatives to fetal tissues. I'm sensitive to the ethical aspects of it, but I think it's too bad there's this fetal tissue available and it's restricted in the US. . . . People are very frightened about cloning, but it has the potential to relieve suffering. It's a shame to not open these doors.

Q What would you like the public to understand about Parkinson's disease?

A I would like them to understand the mask face. Michael J. Fox often has a blank expression with staring eyes. Or people will look angry. That's completely involuntary. When you're encountering somebody with Parkinson's disease they might not look friendly, but underneath that mask is a person wishing they could smile for you.

Q How has your illness affected your music? How has music affected how you cope with your illness?

A Music has been a lifesaver for me emotionally. It gives me something to focus on besides my own suffering. . . . I've pretty much lost the ability to accompany myself with instruments. I played mainly guitar but also the lap dulcimer and the penny whistle.

Q Will you sing in Sturbridge?

A I will sing "My Life," and I'll probably sing "If I Can't Dance." For me, it speaks to being ashamed of the way we move and letting that shame crimp your style. It's a song to me about being free to go out in the world and be yourself and not be ashamed.