April is Parkinson’s disease awareness month. Darolyn O’Donnell, recreation therapy coordinator for the Muhammad Ali Parkinson Center and Dr. Abraham Lieberman, medical director for the Muhammad Ali Parkinson Center talk about the center and the resources available for people with the disease.
JOSE CARDENAS: April is Parkinson's Disease Awareness month. 1.5 million people in the U.S. have the disease. Here to talk about the latest news in Parkinson's disease is Darolyn O'Donnell, recreation therapy coordinator for the Muhammad Ali Parkinson Center. And Dr. Abraham Lieberman, medical director for the Muhammad Ali Parkinson Center. Thank you both for joining us this evening. We've got a couple of pictures that we want to put on the screen just of the facility at the institute. One of them has the fight night name up there and the other, of course, the Muhammad Ali Parkinson Center. Doctor, off-fascinating story to tell about how this all got started and it was because of your relationship with Muhammad Ali and you convinced him to do it.
DR. ABRAHAM LIEBERMAN: That was part of it, but it was also Jimmy walker but I've known him since 1984-85. I tried to get him interested in becoming a spokesperson for Parkinson's Disease. I think if he would lend his name to the disorder, we could create a great deal of awareness and raise money to ultimately get rid of this disorder. And he was very resistant. I said I don't want to be a poster child for Parkinson's.
JOSE CARDENAS: It was diagnosed in --
DR. ABRAHAM LIEBERMAN: 84-85. And he said I don't want to be a poster child for Parkinson's Disease. And I was pretty persistent, finally, he and his wife invited me to their home in Being Springs, Michigan. And I spent the day with him, trying to convince him to become a spokesperson for Parkinson's Disease and I must have worn him down because he said look, why don't you write me a letter? Write me a letter and tell me why I should get involved with Parkinson's Disease.
JOSE CARDENAS: And you ended up writing a letter but actually a poem.
DR. ABRAHAM LIEBERMAN: Well, I thought what am I going to say in a letter to Muhammad Ali? He must gets all sorts of letters and the thought occurred to me that he's a poet.
JOSE CARDENAS: Float like a butterfly, sting like a bee.
DR. ABRAHAM LIEBERMAN: The fact that I'm not a poet and I've never written a poem didn't deter me, which was a great idea that came to me in the middle of the night. I sat down and I wrote a poem and basically, it outlined some of the fears that I thought Muhammad Ali had and one of them was the fear of growing old because Parkinson's is a disease that affects older people and Muhammad Ali stands for everything youthful, vitality, and he got the poem and an hour later and he said I'll do it. He became a spokesperson. Celebrity fight night started, it was an idea from Jimmy Walker, a local philanthropist and Jimmy had put on mock boxing matches to raise money for fighters who were down on their luck and he had been modestly successful. He ran into Muhammad Ali at the meeting at a dinner and the idea struck him that if he could get him to lend his name, the event could really take off. So he spoke to Muhammad and they said we have a friend in Phoenix, Abe Lieberman, and why don't you talk to him? And if he's agreeable, we'll do it. So Jimmy called me. I didn't know Jimmy. I went down and met him and I said some of the money will come to Barrow, I'll do it. And that was the origin of the current celebrity fight night.
JOSE CARDENAS: How did Muhammad Ali come to lend his name to the center?
DR. ABRAHAM LIEBERMAN: Well, I was taking care of Muhammad for a long time. Muhammad, celebrity fight night grew, generated funds and the name Muhammad Ali is almost intricately involved with Parkinson's Disease and I thought if Muhammad would lend his name to the center and Barrow's got an excellent reputation but Muhammad Ali's a unique name for a unique disease, disorder. So I asked Muhammad and Loni. There's only one other Muhammad Ali Center in Louisville that's really a museum of Muhammad Ali.
JOSE CARDENAS: That's where he's from.
DR. ABRAHAM LIEBERMAN: That's where he's from. And so this was -- he lent his name because he lives in Phoenix and he lent his name to the center. We were authorized to use the name Muhammad Ali Parkinson Center.
JOSE CARDENAS: One of the things that really distinguishes the center from other institutes that have devoted themselves to dealing with this horrible disease is that it's not so much research focused as it is focused on telling people how to deal with the disease. There's surgeries and everything else but tell us about the kinds of things that you do.
DAROLYN O'DONNELL: Oh, we at the Muhammad Ali Parkinson Center have the largest outreach program, most extensive outreach program in the country, thanks to funding to celebrity fight night, we're totally donor based.
JOSE CARDENAS: We have a few pictures of the kinds of things you're doing that we're going to run as you're talking.
DAROLYN O'DONNELL: We offer education because it's real important if you have this disease, you're going to have it until there is a cure so you need to know how to manage that disease and you can't manage it if you don't know enough about it to have those meaningful, engaged conversations with your physician that not only talks about your treatment but your personal preferences and most people are seeking things other than medication. We provide education, we provide an extensive amount of education, not only for people with Parkinson's but also their caregivers. We've even gone in and trained professional caregivers at extended care facilities in Parkinson's Disease, as well. We have -- we also have lots of exercise because exercise is a big research topic in Parkinson's, as well. We think that the neuroprotective benefits derived from exercise can actually slow disease progression.
JOSE CARDENAS: And on the education front, you got a number of activities, coming up in the next few weeks, including one that invokes the name of a guest on our show and who actually suffers from Parkinson's.
DAROLYN O'DONNELL: Yes. We have our annual Hispanic -- probably the largest Hispanic outreach program as well and that program, we'll be having the annual education conference on Saturday, April 25th, and we have the ability to webcast and we will be web casting, not only to anybody so that you can watch it from wherever you have a computer but also to sites in Mexico city, Honduras and Colombia, as well. It's got a nice extensive reach to really arm people with the knowledge that they need to have to best manage their disease for the quality of life.
DR. ABRAHAM LIEBERMAN: I should point out we're a national Parkinson's foundation of excellence. There's only a few centers in the United States that have been so designated and this gives us the national Parkinson's foundation partially funds the Hispanic outreach program, provides us with educational materials and videos and has been a real resource for us and our patients.
JOSE CARDENAS: As I understand it, you were one of only five centers in the country that have the size and scope of outreach?
DR. ABRAHAM LIEBERMAN: We have not the size and scope of outreach, but the patient population. We see over 1,000 new patients with Parkinson's a year. Not new to the disease but new to us, and we have about 10,000 patient visits a year so it's a huge center. We're either first or second in the country in the number of surgeries. We do a lot of clinical trials for Parkinson's Disease. But basically, we see a large number of patients with Parkinson's Disease and with this large number, we are able to say, you know, at the end -- if a person says can you tell us more? And I said well just walk right across the hall and there's the outreach program and they'll give you tons of information.
JOSE CARDENAS: And you and I were talking about this before we came on the air. It's one thing to get the diagnosis. But what's been lacking and the thing that you guys provide is okay so what now?
DR. ABRAHAM LIEBERMAN: That's right. And, you know, picture yourself, you come in, you have a little tremor, you've not been worried, your family's been after you to get it seen, you think it's a little tremor, and then you go to the doctor and he says nowadays doctors are very busy. They don't have much time for patients. They're constantly on the computer and doing things and the doctor says you've got Parkinson's Disease. And you say well, what does that mean? Oh, well, here are some books, read about it and come back in about three months and we'll talk to you. The patient is hungry.
JOSE CARDENAS: That's what Darolyn O'Donnell provides. We're almost out of time. Where can people go to get more information about the services that you all offer?
DAROLYN O'DONNELL: They can certainly go to our website, which is www.maprc.com or they can call us at (602)406-4931 and we're there for everybody, regardless of where you receive your care.
JOSE CARDENAS: It's a tough issue and we thank you both very much for joining us on "Horizonte" to talk about it.
DR. ABRAHAM LIEBERMAN: Our pleasure.
JOSE CARDENAS: Thank you. And that's our show for tonight. From all of us here at Eight and "Horizonte," thank you for watching. I'm José Cárdenas. Have a good evening.
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Darolyn O'Donnell:Recreation Therapy Coordinator, Muhammad Ali Parkinson Center; Dr. Abraham Lieberman:Medical Director, Muhammad Ali Parkinson Center;