Lonnie Ali

Transcript for: 
Lonnie Ali

MS. DIANE REHM

11:06:53
Thanks for joining us. I'm Diane Rehm. Lonnie Ali knows a thing or two about fighting. Not only is she the wife of boxing legend Muhammad Ali, she has been at his side during his 26 year battle with Parkinson's disease. It's a disease my husband suffers from as well, along with a million and a half other Americans. Lonnie Ali joins me in the studio to talk about her roles as caregiver for her husband and advocate in the search for a cure for Parkinson's. It's so good to have you here.

MS. LONNIE ALI

11:07:46
Thank you, Diane, it's great to be here.

REHM

11:07:48
Thank you. And of course we'll take your calls throughout the hour. Join us on 800-433-8850, send us your e-mail to drshow@wamu.org. You have known Muhammad Ali for so many years. Since you were a child.

ALI

11:08:14
That I have. I've had the pleasure and the great joy of knowing Muhammad since I was six years old.

REHM

11:08:21
Six?

ALI

11:08:22
Six. Now, Diane, understand there is a big age difference between Muhammad and I. He was approximately 22 at that time, when I first met him training for his first fight with Sonny Liston.

REHM

11:08:35
He was how old at the time?

ALI

11:08:38
About 22.

REHM

11:08:40
About 22 when you met him, but didn't you see him in the neighborhood? Didn't you...

ALI

11:08:49
No. Actually, the very first time I met him, we had moved into an area, suburb of Louisville. And I was six attending Catholic grade school, Catholic school. I was in first grade and Muhammad, at that time, was training in Florida for his fight. You know, he trained in Florida, Miami Beach.

REHM

11:09:11
Yeah.

ALI

11:09:12
But, I had no idea who he was and his parents, coincidentally, lived across the street from us in this neighborhood. And the first time he came home to visit his parents is when I first saw him and it was quite an event.

REHM

11:09:30
Did you speak to him that day?

ALI

11:09:32
Oh, oh, yes. I came home and found my mother standing in the doorway looking out over the front porch into his parents' front yard into their porch and Muhammad was sitting, who at that time was Cassius Clay, was sitting on the front porch. And I'll never forget he had on a short sleeve white dress shirt with a black bow tie, a black pair of pants, slacks, black shoes, very, you know, conservatively dressed. Nice haircut and he had every little boy in the neighborhood, and I do mean every little boy, I should say and big boy in front of him, you know, just surrounding him on this porch. And he was sitting on the top step and their bicycles were all over the drive. His mother never would have been able to get out if she needed to. And they were just mesmerized and one of those little boys was my brother, who was a year older than me. But they knew -- I guess they knew who he was.

REHM

11:10:29
Yeah, exactly.

ALI

11:10:29
But, of course, I did not.

REHM

11:10:32
Now, tell me how he is today.

ALI

11:10:36
Muhammad is doing well, you know, all things given that this man has had Parkinson's disease probably for the last 25, 26 years or more, 'cause you never really know when it started.

REHM

11:10:48
Exactly.

ALI

11:10:49
He has done, you know, really, really well. I am pleased, he's pleased. We're very optimistic. We live each day with hope and we do everything we can do every day to live life to its fullest. We have very good quality of life.

REHM

11:11:05
How old was he when he was first diagnosed?

ALI

11:11:10
Muhammad was probably -- let's see he's 84, he was probably about 42, but he probably had it when he was about 39, when you think about, because that's when he was diagnosed and usually you've had it for several years when you're first diagnosed.

REHM

11:11:23
I see.

ALI

11:11:24
Because it was a tremor, he actually had a visual sign, symptom, and therefore he probably had it two or three years prior to that, which means he really could be classified as early onset.

REHM

11:11:35
Exactly. And early onset Parkinson's is said to affect people more seriously.

ALI

11:11:44
That is true, but he has been quite fortunate. You know, Muhammad was an athlete. He was in great physical shape. I mean, he was the epitome of beauty with the body and took very good care of himself. He didn't drink, smoke or anything like that, so I think it has served him well, plus he exercised and as we know now with research exercise, tends to slow the progression of the illness. So that worked to his benefit as well.

REHM

11:12:12
Did the doctors prescribe medications for him immediately?

ALI

11:12:19
Well, yes, they did and they prescribed Sinemet, which at that time, was the standard protocol for treatment…

REHM

11:12:25
Right.

ALI

11:12:26
…of a pharmaceutical. And Muhammad, being Muhammad and being the athlete that he was...

REHM

11:12:32
Says, I'm not gonna do it.

ALI

11:12:34
Well, no, he wouldn't say that to the doctor he just very politely stuck it in his pocket and as I tell people, that's the last we saw of that.

REHM

11:12:41
Really.

ALI

11:12:42
Yeah, because, you know, he felt good. He was still functioning at a very high level. His speak was a little slurred, had slowed a little bit. His gait had gotten a little stiff, not much, but enough for the public to notice something was different, of course. But for Muhammad, with his attitude, mind over matter always, he felt he did not need medication, that he could do this on his own.

REHM

11:13:05
How long did that last?

ALI

11:13:08
For long periods of time. I mean, I would try to get Muhammad to take his meds frequently, but it was very difficult. You know, and like I say, he's not, he never was a pill popper. He wasn't one who took vitamins or cold remedies or, you know, he was never sick, you know, I never even saw Muhammad with a headache. I never saw Muhammad with anything. You know, and people would always travel up to his camp with, you know, this vitamin, this herb, take this, take that and he never did. He might act like he was gonna take it, but he never would. So he wasn't a person who depended on, you know, pills for anything. Plus he had trouble swallowing pills even then. You know, and his children have the same issue. It's hard for them to swallow pills.

REHM

11:13:49
I see. Really?

ALI

11:13:49
Yeah, so it's -- you know, he really wasn't into taking his medication.

REHM

11:13:55
I think there may be a great many people who wonder whether Muhammad Parkinson's wasn't brought on by the boxing.

ALI

11:14:09
You know, I understand that, given the -- you know, the type of career that he had and incidentally, he was first diagnosed with Parkinson's Syndrome not Parkinson's Disease. And Parkinson's Syndrome, you know, actually comes from trauma to the brain, to the head, so I can understand why they initially would have thought that. But once we say progression, we knew it was something different and then he was actually diagnosed with Parkinson's disease and all the -- you know, the relevant testing has been done and he has Idiopathic Parkinson's, which means run of the mill Parkinson's disease.

REHM

11:14:48
One of the other people who is quite well known and has Parkinson's is Michael J. Fox.

ALI

11:14:59
Right.

REHM

11:14:59
How do you believe or how do you see that the symptoms that Muhammad exhibits differ from or are similar to those of Michael J. Fox?

ALI

11:15:14
Well, of course, movement is an issue for both of them and there's an age difference there. Michael, of course, too, had early onset, you know, and as you know, Diane, Parkinson's affects people differently. Every individual is different.

REHM

11:15:28
Totally.

ALI

11:15:29
Michael suffers from more dyskinesia. His voice doesn't seem to be as affected as Muhammad. Muhammad doesn't really have the dyskinesia. He at times may have tremor when he goes off meds, but his voice is affected. Otherwise, Michael's pretty high functioning besides the dyskinesia, I would say. Personally, privately, I wouldn't know because, you know, he would know better and his wife would know better what he deals with, the challenges he deals with every day. But just on the surface, it appears to be that he suffers with dyskinesia much more than Muhammad.

REHM

11:16:02
Lonnie Ali, she's the wife of Muhammad Ali. Of course, she's an outspoken advocate to raise awareness of Parkinson's and increase funding for research. She was named in April of this year to the Presidential Commission for the Study of Bioethical Issues by President Obama. You can join us, 800-433-8850. What is your work on that commission involve?

ALI

11:16:41
I'm one of several commissioners on that commission and it's great work that we do and the topics are extremely interesting. We are led by, chairing the commission is Dr. Amy Gutmann from the University of Pennsylvania and it's been a wonderful experience for us. And then, also, I should say it's co-chaired by Jim Wagner from Emory, which is where Muhammad's doctors are, by coincidence.

REHM

11:17:08
Oh, I see.

ALI

11:17:08
So it was pleasant to be able to spend time with him, too, but it's a very interesting commission. The things we do are quite relevant and hopefully we will be of use to the president.

REHM

11:17:21
Is the focus there to find a cure?

ALI

11:17:26
No, not on this particular commission. Not on this bioethical commission, no.

REHM

11:17:32
Is the focus to examine various ways in which scientists can do their research?

ALI

11:17:43
In some instances -- actually, we decide on topics. We've been given a recent charge by the president on a specific topic, so therefore we are...

REHM

11:17:53
And what is that?

ALI

11:17:54
Synthetic biology, creation of life synthetically. So that's the charge we've been given specifically by the president for this particular several...

REHM

11:18:05
Does that involve stem cell research with that?

ALI

11:18:08
That can -- well, not necessarily.

REHM

11:18:12
It could involve a whole range?

ALI

11:18:15
It's sort of the marriage of science and engineering and biology, so there's a lot of opportunity there for a lot of research on a lot of different fronts. Even in Parkinson's disease, you know, engineering has become extremely relevant with DBS.

REHM

11:18:32
Lonnie Ali, she is the wife of Muhammad Ali. We'll take a short break and be right back.

REHM

11:20:03
And...

ALI

11:20:03
So, you know, it's something that sort of compromises a little more so than maybe the PD.

REHM

11:20:06
...and we're talking with Lonnie Ali. She is the wife of Muhammad Ali who suffers from Parkinson's. There are more than a million people out there who do and many thousands are diagnosed each year. Muhammad Ali was truly early onset, along with Michael J. Fox. It means that there is a longer period that perhaps one carries the disorder and that makes it a longer care-giving process, doesn't it, Lonnie?

ALI

11:20:49
Yes, it does.

REHM

11:20:51
Tell me how you are managing.

ALI

11:20:55
You know, I think I manage quite well, you know. And as you know, Diane, there's different stages or phases of Parkinson's Disease. And initially when a person's diagnosed, it's not so much the care giver role that you play, it's more of the care partner of joining them in that journey as it progresses. But as a care giver, I think I'm doing fairly well. I still pursue a lot of my own passions...

REHM

11:21:20
Good.

ALI

11:21:21
...while taking care of my husband and he encourages that. He's a wonderful man with a positive attitude who gets up every day with, you know, the thought of what he's going to do and what he's going to accomplish and with a smile on his face. He's never been one -- ever since I'm known Muhammad, he's never been a negative person. So -- and he never asks, why me, with this illness, never. And he -- you know, he just moves through life, you know, with a joy and it's a joy to be with him.

REHM

11:21:51
Did you, when you first met him, know in your heart that you wanted to be with him?

ALI

11:22:00
No, not when I first met him. I was scared to death of him because I was little and he was big (laugh). And, I mean, he is. I mean, even now...

REHM

11:22:09
He's huge.

ALI

11:22:09
...when -- you know how Muhammad loves children...

REHM

11:22:11
Yeah.

ALI

11:22:11
...and you see these babies who he wants to hug and kiss on so much and then they start crying because Muhammad's a big guy, he's just a big guy. So he's a little scary and then if he has on all black, he's even more scarier, you know, because he looks like, you know, something that's out of the dark or something, but actually, not when I was six, no. But when I was 17, yes.

REHM

11:22:34
And tell me about that meeting when you were 17.

ALI

11:22:39
It wasn't really a meeting, it was more of an epiphany. It was just -- it's just like, you know, the sky is going to be blue the next day or the sun's going to come up. It was just one of those -- it was just -- you know, just one of those things that...

REHM

11:22:51
What were...

ALI

11:22:52
...went through my mind that one day I would be with Muhammad.

REHM

11:22:57
What were the circumstances of that meeting?

ALI

11:23:00
It wasn't really a meeting. See, the entire time I was growing up from the age of six on, since the time I met Muhammad, he had played an integral part of my life. He would come home and he'd be at his mother's house, he'd be across the street in our house, he'd take me...

REHM

11:23:13
Oh, I see.

ALI

11:23:13
...to these little events. He always made time...

REHM

11:23:15
Oh, I see.

ALI

11:23:15
...to come home and do these little community -- I asked that -- people would ask him to come home and do because he had -- you know, he was probably Louisville's most famous son at that time, so he always tried to help out, you know, the little organizations where he could lend his celebrity to help them. And he would take me along with him and through this route of growing up with him, more as a mentor where he would give me these constant lectures. He never missed an opportunity to give me a lecture when he came home.

REHM

11:23:44
Give me an example.

ALI

11:23:46
Oh, it was -- you know, it was the lectures he did on his college circuit, you know. The purpose of life, you know, what is the meaning of the heart or, you know, all kinds of things and just about life in itself. But he used to come home and I remember because I was this little girl with pigtails and glasses he used to always tell me I was square. You know, at that time it was a big thing, you're square.

REHM

11:24:07
Yeah.

ALI

11:24:07
But he said, that's okay that you're square because, you know, that means, you know, life is still good for you. And, you know, he would just sort of point out the things in life that he wanted me to sort of escape and avoid and I would listen to him and even though my father would say the same kinds of things to me, I would listen to Muhammad...

REHM

11:24:25
Sure.

ALI

11:24:26
...first...

REHM

11:24:26
Sure.

ALI

11:24:27
..you know, because I figured he knew.

REHM

11:24:28
Yeah.

ALI

11:24:28
'Cause he'd been out there, he knew. And he's always been an instrument in my life of guiding.

REHM

11:24:34
Did it concern you at all that he had already had three wives before?

ALI

11:24:41
No, at that time, he didn't. When I first met Muhammad, he wasn't married at all, so I knew all of his wives.

REHM

11:24:46
Okay.

ALI

11:24:47
I met his first wife, Sonji, who was -- you know, I only saw her two or three times. She came to visit his mom. And the kids just loved her because she was very childlike in spirit. She'd come out and play jump rope with us and, you know, she was wonderful. And then I remember when he brought his second wife home, Belinda, whose name is now Khalilah and she was very regal looking. Tall -- she's very tall, beautiful woman who looked like she was East Indian. Gorgeous lady, but I didn't know who she was and I wondered, where was Sonji. And Muhammad said, this is my wife and I was like -- you know, divorce...

REHM

11:25:22
Yeah, yeah...

ALI

11:25:22
...I didn't understand divorce at the time.

REHM

11:25:23
...yeah.

ALI

11:25:24
And then, you know, through that, you know, I got to know her and the children when they would come home with Muhammad. You know, Maryum and the twins at that time and Muhammad would bring them home to see his parents. And Belinda would bring them home -- Khalilah would bring them home to see his parents. And so I got to know them at an early age and then his wife, Veronica, I met when he brought her home as well and I've known her kids ever since they were born, so I've known them all.

REHM

11:25:50
So you were comfortable becoming the fourth wife.

ALI

11:25:56
Yeah, I -- but, you know, my role with Muhammad, you know, is sort of like I'm the girl next door, I'm the small town girl and I knew Muhammad for what he was and what he stood for and his background and we had similar foundations, you know, families and I knew this was going to be a challenging period in his life, you know. And I just felt that that's maybe why God put me here, was to assist him in this chapter -- or these chapters of his life.

REHM

11:26:26
That's a lovely way to put it.

ALI

11:26:28
Well, I believe that, yeah, yeah.

REHM

11:26:31
Does he express faith in God?

ALI

11:26:36
Always. Ever since he was -- you know, ever since I met him he's always had that belief in God and that spiritual being of believing there was a higher power. And Muhammad was one to not just talk about his faith, but to practice it every day. I mean, just in the very simple things that he did and the kindness he showed people. People he didn't even know, people off the street. You know, he's always been a very caring, giving, loving person. And when you talk about somebody who would actually give you the shirt off his back, this man is genuinely one of those people.

REHM

11:27:13
He is a hero to so many people, no matter what age they are and yet, when he was fighting, he seemed so boastful and funny and totally self-confident.

ALI

11:27:34
He was all of that, all of that. Muhammad was his own best promoter. He always kept that boyish charm and that humor. If you talk to Angelo Dundee today, who is 89, approaching 90, he'll talk about, you know, some of the little tricks Muhammad used to play on people, practical jokes. Muhammad had a love for, you know, magic and doing that kind of thing, of entertaining people. So he always kept that boyish charm and he had that wit and that humor, but he was boastful and he was self-confident because even when he was in high school, prior to going to the Olympics, he was probably -- believed in himself more than anybody else around him and he never let anything detract him from his goal.

REHM

11:28:19
Interesting.

ALI

11:28:19
Yes. This man -- you know, they have the book out called "The Secret." Muhammad knew the secret a long time ago and practiced it. He could visualize what he was going to be. And if you talk to his classmates that he went to high school, they'll tell you that he would draw his leather coat that he was going to have made -- jacket, once he became heavyweight champion of the world. He always knew what he was going to do and what he was going to be with regards to his profession of boxing.

REHM

11:28:45
How does he spend his days? How do you spend your days?

ALI

11:28:51
Well, as we like to say, those of us who are around Muhammad, he is the center of our universe.

ALI

11:28:58
And he knows it. Our day is basically around him, you know, but that's okay because Muhammad has always led a very interesting life, he's an interesting person. He likes to do interesting things. You know, when we're at home in Arizona, he goes to physical therapy five days a week, Monday through Friday. He does hand therapy. You know, there's a bunch of therapies he does...

REHM

11:29:21
Sure.

ALI

11:29:21
...so just to keep him moving and keep him exercising, which he likes because it keeps him out in the public. And he -- you know, he goes to concerts, he goes to social events, he goes to basketball games, he goes to football games, he goes to hockey games. Muhammad does a lot of things. I'm very fortunate to have with me my sister, Marilyn, who helps me with Muhammad and she, like me, is a natural care giver, so I always tell -- and this allows me to come and do things like your show today, Diane. She's with him. But I always tell people they have a social life, I don't (laugh) because they're very -- you know, she's very outgoing and energetic and she -- you know, they're very much the same. In fact, she goes to these events with him so much, just the two of them, 'cause I'm gone or I'm, you know, at home or something, people sometimes mistake her as me.

REHM

11:30:07
For you.

ALI

11:30:08
That's right, but that's okay.

REHM

11:30:10
Tell us about the Muhammad Ali Parkinson Center that opened last year in Phoenix.

ALI

11:30:18
Yes. The Parkinson Center is a great joy for both Muhammad and I because it delivers care to -- the finest care to a lot of people in Maricopa County, which is Arizona, who are uninsured, under insured. And it reaches out to those people specifically who have Parkinson's disease and makes it possible for them to receive care. It is located in St. Joseph's Hospital and part of Barrow's Neurological Hospital out in Phoenix. It is run by Dr. Abe Lieberman, who used to be the director prior to his leaving going to Miami and has now come back. And it's because of him, actually, that that center is there. He decided that, you know -- we had a charity we were doing out there and they donated money to Dr. Lieberman's research. And it -- you know, this was an annual thing, so he decided to name the center after Muhammad, which was a great honor. And now it's actually the Muhammad -- the Lonnie and Muhammad Ali Parkinson's Pavilion.

REHM

11:31:23
Lovely. What kind of research do you think gives all of us the greatest hope as far as Parkinson's is concerned?

ALI

11:31:35
You know, Diane, I think there are so many things being done on so many different fronts, I wouldn't limit it to one thing. There's a lot of intervention that has been done with DBS and pharmacological drugs that have been used that have given people hope and quality of life. But, you know, of course, it's going to be the hard science research that's going to probably deliver the best answers as to how to cure, halt or stop this disease or prevent it. And there's a lot of things being done.

ALI

11:32:07
Of course, the stem cell research is still being done and fetal stem cell -- I mean, fetal cell transplants are being done, not in this country, but in others and that's the one great thing about Michael J. Fox's Foundation is that he, you know, goes global in his answers for Parkinson's disease and treatment and cure. And I think somewhere along the line, we're gonna find it. And, you know, it might be by happenstance or whatever, observation, but we're going to find it.

REHM

11:32:36
What about DBS, deep brain stimulation. Has Muhammad had that or considered it?

ALI

11:32:45
No. Muhammad has not had it and he's really not a candidate for it. Muhammad has a long way to go before he would ever be in need, I think, of DBS. And like I said, if he was a candidate -- he actually has been evaluated. He's not a candidate, because you have to have a certain type of brain makeup.

REHM

11:33:05
Interesting.

ALI

11:33:05
Your ventricles in your brain have to be either small or large, I can't remember which, and his aren't. So he's not really a candidate for it for that reason.

REHM

11:33:14
Lonnie Ali and you're listening to "The Diane Rehm Show." Let's open the phones, 800-433-8850. First to St. Joseph, Mich. Good morning, Barbara. You're on the air. Oh, dear.

BARBARA

11:33:37
...this show. It's an honor. Thank you, Diane, for your work. I want to know if either one of you know Dr. David Perlmutter out of Naples, Fla. He's a neurologist who's an expert in neurodegenerative diseases and he's been doing incredible work. I just came from the Functional Medicine Seminar where he showed us some YouTube videos that he uses glutathione for Parkinson's induced symptoms. And before your eyes, you see people's motor skills change. And so I'm just interested if you know of him.

ALI

11:34:14
No, Barbara, but let me say hello, because, as you know, we live -- we have a home near St. Joe.

BARBARA

11:34:20
Yes.

ALI

11:34:21
So it's nice to be speaking with you this morning and thank you for listening. I'm not familiar with Dr. Perlmutter, but I am somewhat familiar with the glutathione treatment. And, you know, we consider it one of the natural treatments for Parkinson's Disease. I don't know what the effects have been or what the results have been with the treatment, but I'm glad to hear there has been some positive feedback, from what you have said, in watching these You Tube videos, that it has had a positive impact on some PD patients.

REHM

11:34:50
Barbara, thanks for calling. To Boston, Mass. Good morning, Jerry.

JERRY

11:34:56
Good morning.

REHM

11:34:58
Hi there. Go right ahead.

JERRY

11:35:01
I was wondering if your guest is aware of the article that was in the Wall Street Journal on the 10 of August that went into fairly decent detail comparing the progression of dementia and the changes in the brain structure in parkinsonian dementia versus Alzheimer's and with specific focus on a characteristic of Parkinson's called Lewy body. In each case, there's a formation of plaque, but it's a significantly different type of plague and the Lewy body is a different formation. So the result seems to be a completely progression of the type of brain degeneration and therefore symptoms. There's not a loss of personality, but there is the loss of motor control. There is a loss of being oriented and alert to day, time or place and I was wondering if she is aware of any of that.

JERRY

11:36:00
And also a second question, specifically with relationship to her husband, who seems to have suffered Parkinson's perhaps as a result of trauma, which is of course, different from the later adult...

REHM

11:36:12
But, you know, Jerry, that's exactly the question I asked Lonnie early in the program and she says it was not from trauma, but in fact, simply the development of Parkinson's disease. What about Lewy body?

ALI

11:36:34
Well Jerry, actually, I have not seen that article, but I do know about the research being done about Lewy body, you know, and how it relates to dementia with Parkinson patients and it's something that a lot of researchers are looking into today, but let me just clarify -- and, you know, I'm glad you were able to look at that because it does make a difference with the individual who develops Lewy body dementia. But let me say this, too. With Muhammad -- because this is, you know, a really frustrating thing for me -- not as much for him, but for me that people still believe that Muhammad developed Parkinson's disease from his boxing career. He did not and let me say that again, he did not. This did not come from physical trauma. If anything, they found toxins in Muhammad's blood, pesticides. So it could be from toxic poisoning.

REHM

11:37:30
Lonnie Ali and we'll take a short break. When we come back, more of your calls, your questions. Stay with us.

REHM

11:40:03
And welcome back to a conversation with Lonnie Ali. She is, of course, married to The Champ. And Jason Vaughn posted a message on Facebook. He says, "My mother waited tables in a airport years ago. One day she waited on The Champ and his party. He tipped her 50 bucks and gave her two autographs, one for me, one for my brother. He's a man of unbelievable courage, one of my personal heroes." And here's a message from Renee, who says, "I care for my dad. It's not easy. I'd like to know how to keep your head up when it seems there is no hope."

ALI

11:40:59
Well, Renee, I wish I had you on the phone so that I could ask you just a few questions, but the first thing that you have to do is realize that this disease is manageable. Just like any illness, whether you have hypertension, diabetes, this is a manageable illness and you just have to realize that. Don't let it overwhelm you. Every day, you've gotta get up with a positive attitude. Sometimes that can be difficult. I don't know if you have help, if you're taking care of your father 24 hours, seven days a week, but if you are, you need to bring in some type of support. You need to get friends, family, someone to come in and to assist you.

ALI

11:41:34
You really need to have a working relationship -- a very good relationship with your father's specialist, his PD specialist, so that you can -- if things need to be adjusted, if you see things going on with your father, you're having issues with his mobility or his meds or side effects, you need to be able to call your physician and talk to him about that. But it's very important, like I said, to stay organized, to keep his meds organized and realize you can manage this illness. Get yourself some help and you need to get out and get away. You can suffer from burnout. Caregivers do this. It's very common to suffer from burnout, but you need to get someone in there to assist you.

REHM

11:42:15
Of course, money can be a problem.

ALI

11:42:19
Huge issue, Diane. Huge issue for many families, especially in the economic downturn that we are experiencing now. That's why I said sometimes it's very important that you're able to bring in friends and family for support.

REHM

11:42:32
Sure.

ALI

11:42:32
Because it's -- and let me tell you something, even though if you may have all the money in the world, not all people that you may hire, unless you hire them individually and have screened them from one end to the other, these agencies that come through sometimes, people are not really familiar with how to deal with Parkinson's patients. They're more familiar with how to deal with people who are bedridden, elderly, even Alzheimer's patients, but it's hard for them to understand how to deal with Parkinson's patients. So you really have to vet the person that you're going to have.

REHM

11:43:04
What do you think is so different about Parkinson's patients?

ALI

11:43:10
Well, for one, as you know, Diane, Parkinson's affects everyone differently. And someone can be at a different stage in Parkinson's. And it's its person's own little idiosyncrasies. I know with Mohammad, you know, we've tried that -- gone down that road of hiring people from outside who are from agencies and Mohammad really disliked that. He didn't like different people...

REHM

11:43:30
Right.

ALI

11:43:30
...showing up. He didn't like the...

REHM

11:43:32
Right.

ALI

11:43:32
..idea of somebody coming in while I was gone to -- what he would think of as babysitting him. He didn't want that. But really, it was more for somebody to be there in case he needed something. He -- you know, so everybody's different.

REHM

11:43:47
All right. Let's go to, let's see, Connersville, Ind. Good morning, Dick.

DICK

11:43:55
Oh, wow, this is a pleasure to talk to you, Diane.

REHM

11:43:57
Thank you.

DICK

11:43:59
And especially to talk to Lonnie. Mohammad is my number one hero of all time.

ALI

11:44:04
Thanks, Dick.

DICK

11:44:04
Oh, my God, I was born 47 days after he was.

DICK

11:44:09
I know his birthday's January 17, '42. I'm looking at all my books. I've got a boxing glove that I won in a Parkinson's lottery for the L.A. marathon. I know he started that several times.

ALI

11:44:21
Right, he did.

DICK

11:44:22
And he's my all time hero. I know you -- I thank you for taking care of him. I'm looking at a picture of Howard Bingham. I know he's helped him a lot.

ALI

11:44:29
Oh, you know what, Jerry, I tell you, it's really funny. I can't go anywhere without Howard's name being mentioned. Why is that?

DICK

11:44:36
Well, I don't know. I'm looking at the Sports Illustrated that said, who's that guy with Howard Bingham?

ALI

11:44:40
Oh, and you would have that one. Yeah.

REHM

11:44:43
Yeah.

DICK

11:44:44
And one other thing, his sense of humor, I remember the great time, I'm pretty sure you were there with Ed Bradley on "60 Minutes," when Mohammad pretended like he was just asleep.

REHM

11:44:54
Yeah, I remember.

ALI

11:44:54
Right. Yeah, we were in Cuba and actually, Ed's producer sort of rigged that and Ed was just taken by -- he never figured out until we sort of sprung on it him that Mohammad really was not asleep. He was really getting very concerned.

REHM

11:45:10
(laugh) Dick, thanks for calling. Let's go now to Marty who's in Miami Beach. Good morning to you.

MARTY

11:45:19
Hi.

REHM

11:45:19
Hi.

MARTY

11:45:20
Nice to talk with you. I'm a Miami Beach native living with recently diagnosed Parkinson's myself. In fact, I met Mohammad a couple of years ago at the Miami Beach Convention Center for the Art Basel show where the book called "Goat: Greatest of All Time."

REHM

11:45:36
Yes.

ALI

11:45:37
Yes.

MARTY

11:45:38
And I'm working here in Miami with the National Parkinson's Foundation, which is one of about 10 or 12 different international organizations that work to raise money for research. I was particularly interested in your mentioning about synthetic biology because one of the pathways that I think big progress can be made with all these neurodegenerative diseases, Parkinson's, Alzheimer's, Epilepsy, is through simulation using computers to do clinical trials. Anyway, I also wanted to mention that there's one more celebrity that's based here in Miami that you haven't mentioned that's also a Parkinson's patient...

ALI

11:46:20
Yes, I know.

MARTY

11:46:21
...Janet Reno.

ALI

11:46:21
That's right.

MARTY

11:46:22
Janet Reno.

REHM

11:46:22
Of course.

ALI

11:46:24
Absolutely.

MARTY

11:46:24
And what I was wondering, Diane, was how could we get you and Ali and Michael J. Fox and Janet Reno to participate in some kind of a media thing? Your show is doing wonderful things, Diane, to get the word out. We shape our media, then it shapes us. And I was wondering whether or not you folks might be available to be invited to sunny Miami Beach during winter when it's kind of cold and snowy to join us and celebrate awareness and hope.

REHM

11:46:55
Marty, if you arrange it, I will come, no question of it. I don't know about Mohammad, I don't know about Lonnie, don't know about Michael J. Fox. It might be possible.

ALI

11:47:11
You know what, Marty, first of all, I wish you well on your journey with PD and it sounds like you're somebody who really goes out there and you're an activist of finding out information and educating yourself about this illness, which is just great. I'm glad to see that. And that you're aware that, you know, the awareness of Parkinson's disease is so important, especially when you talk about finding funding and raising monies for the research that is so necessary and Mohammad does that constantly. We will be attending this year Michael J. Fox's event in November, which raises a lot of money and creates a lot of awareness. And Michael is thinking of different ways that he and others who are nationally known who have this illness can participate in maybe a PSA that can bring awareness to this disease.

REHM

11:48:01
And, of course, you will be attending an event tonight.

ALI

11:48:07
That's correct. I will be here tonight at PAN's Udall Parkinson's dinner here in Washington D.C., which raises money for the -- for Parkinson's research as well and is named after a famous Senator, Mo Udall, who suffered with Parkinson's Disease the latter part of his life.

REHM

11:48:25
Marty, thanks for your call. Let's go to Boston, Mass. Good morning, Bill.

BILL

11:48:33
Good morning, Diane, good morning, Lonnie.

REHM

11:48:34
Hi.

ALI

11:48:34
Good morning.

BILL

11:48:36
Just a comment and a quick question.

REHM

11:48:37
Sure.

BILL

11:48:37
First of all, I can't invite you to rainy, miserable Boston today, but, you know, thank God for the medication that's there, the (unintelligible) the operation -- the DBS operation which I had. It mitigates the -- relieves the symptoms, et cetera, and it's really been a godsend to many people. I think of these poor folks 30, 40, 50 years ago who suffered from Parkinson's and we had no sort of relief.

REHM

11:49:00
Right.

BILL

11:49:00
So thank God for the advances in that.

REHM

11:49:02
Right.

BILL

11:49:02
The second question is, is it -- Diane, in your husband's case or Lonnie, in Mohammad's case, is there any family hereditary aspect of it? For example, my mother had it, my two cousins had it, my brother has it, so it runs in my family. Do you wanna comment on any hereditary aspect of it, that you know of?

REHM

11:49:18
There is just -- you know, we have wondered about that in John's case, but there's just absolutely no history that we have been able to discover. Lonnie, how about you?

ALI

11:49:35
Not in Mohammad's, either. Nothing. Mohammad's the first one in the family that we know of.

REHM

11:49:41
And it does seem as though the incidence is becoming more frequent and nobody knows why.

ALI

11:49:51
That's true, Diane. The more we travel around, you know, in fact, that's why I became, you know, a care giver advocate and going out and talking to people about care giving is because I was being approached more and more by people who were being diagnosed or had friends...

REHM

11:50:06
Exactly.

ALI

11:50:06
...who were being diagnosed.

REHM

11:50:07
Exactly.

ALI

11:50:07
And the incidence was increasing and it's sort of scary and alarming.

REHM

11:50:12
Bill, tell me about the deep brain stimulation and how that's helped you.

BILL

11:50:19
Well, I had it about two years ago and the result is that instead of taking medication every hour, I'm now taking it every two hours. I'm now able to straighten up and walk a lot more straight. My posture is a lot better. At times in the past I'd literally have to crawl at home to get from room to room and now I never have to crawl. My sense of falling has decreased and I'm talking about it now. In the past I sort of hid it. I didn't tell people about it. And now I'm very proud to be an advocate for the surgery and for the whole process and the whole treatment of it and becoming sort of public with it. So it's helped me a great deal. Even now at my worst, it's better than my best was before the surgery.

REHM

11:50:54
Wow.

BILL

11:50:54
It's exactly two years ago I had the surgery.

REHM

11:50:56
I'm so glad...

ALI

11:50:57
Wow, yes.

REHM

11:50:57
...to hear that.

ALI

11:50:59
And you sound like you're doing very well, Bill. And...

BILL

11:51:02
I am.

ALI

11:51:02
...your voice is...

BILL

11:51:03
And I...

ALI

11:51:03
...your voice is very strong and that's great. And I'm so glad to hear that you're doing that well...

REHM

11:51:08
Absolutely.

ALI

11:51:08
...and DBS has helped you.

REHM

11:51:09
Keep it up, Bill. Good luck to you. Thanks for calling. To Richard in Vienna, Va. Good morning, you're on the air.

RICHARD

11:51:21
Good morning, Diane. I don't have a question. I have an anecdote about...

REHM

11:51:25
Sure.

RICHARD

11:51:25
...meeting Mohammad twice. And the first time, I was on my way back from basic training in Fort Dix, N.J. driving down the Jersey Turnpike and we saw Mohammad in a -- I think it was a maroon Rolls Royce. He was driving and there were a couple guys with him and we waved a piece of paper and a pencil.

ALI

11:51:46
Oh, gosh, I know where this is going.

RICHARD

11:51:49
Well, he pointed to the side of the road and I said, he's gonna pull over. And they said, you're crazy. You know, we were four white kids with skinheads. He pulled over behind us. I went back, shook his hand...

REHM

11:52:01
Wow.

RICHARD

11:52:02
...and got four autographs. It was -- we just couldn't believe it. And then many years later, at least 20 -- 15, 20 years later, I was in Atlanta on a business trip and he was there fighting a charity fight with Mayor Jackson. And it was just a joke, obviously, but he had the room right down the hall from mine and I saw him there and he remembered me.

REHM

11:52:26
Oh, my gosh.

ALI

11:52:28
Yeah, yeah.

REHM

11:52:28
Fabulous stories.

ALI

11:52:29
Yeah, that's Mohammad.

REHM

11:52:30
Yeah. I mean, what a guy.

ALI

11:52:32
Yeah.

REHM

11:52:33
What a guy. And you're listening to "The Diane Rehm Show." Richard, thanks for sharing those stories. Let's go to Ivan who's in Weare, N.H. Good morning to you.

IVAN

11:52:47
Hi, good morning. I just want to thank Mohammad. He doesn't know it, but he saved my life back in the '70s. I was living on the Lower East Side in New York and I was playing music professionally, rock and roll. And, you know, all the things that went with it, drinking and drugs and all that stuff. And it caught up with me to the point where I was contemplating on committing suicide. And I -- you know, I started turning my life around. And Mohammad Ali was a model. He was a role model that I followed and I started emulating some of the things that, you know, he was talking about. And I started dressing like him. I gave up, you know, drinking, I gave up fooling around with, you know, all kinds of substances and went back to college.

REHM

11:53:30
Good.

IVAN

11:53:31
And today I'm a grown man and I have a daughter who's a doctor and another one who's an executive. And -- you know, and I never had the opportunity to say thank you to him, obviously, but I wanna say that today. Thank you.

ALI

11:53:46
Thank you, Ivan. I will definitely tell Mohammad. You never know who you are influencing with your life.

REHM

11:53:51
It's true.

ALI

11:53:52
But -- yeah, but it's so wonderful to hear that and God bless you for turning your life around.

IVAN

11:53:57
Thank you. Thank you.

REHM

11:53:58
And congratulations on those wonderful children.

ALI

11:54:02
Yes.

REHM

11:54:03
Thanks for so much calling. And finally, let's go to Kim who's in Indianapolis. Good morning to you.

KIM

11:54:12
Good morning. How are you both?

REHM

11:54:14
Fine, thanks.

ALI

11:54:14
Fine.

KIM

11:54:16
Oh, great. Well, I just wanted to say that I am native Louisvillian and I was just so excited to hear -- my husband called me. I'm in and out of the car. And he said, turn it on "Diane Rehm Show." And I turned it on and heard this wonderful interview and just was so -- I was just so impressed by it and just wanted to call and let you know I met -- also met Mohammad Ali when I was eight years old in front of WHAS TV84.

ALI

11:54:40
Yeah.

KIM

11:54:40
Was 84, the radio and a little girl. He was in a limo and I was eight years old and I leaned -- I asked for an -- ran across the street and asked for an autograph and he kissed me on the cheek and gave me an autograph. And I'd never seen inside a limousine, I mean, so I just -- I'll tell you what, it really inspired me and my mom had stories of growing up. She went to school with him and she'd talk about how he would race the school bus...

ALI

11:55:05
Yeah.

KIM

11:55:05
...not the school bus, the city bus. You know, he would race the bus. But one thing she said he used to do, like, sometimes, like, he was always training and all that. He was tired. He might fall asleep. He'd wake up when the bell ring and he'd get up boxing and she'd tell us all these stories. And when he came home with the medal and all these girls were around him and she said she just kinda walked by 'cause they were all just kinda -- you know...

REHM

11:55:28
Yeah.

KIM

11:55:28
...how girls are.

REHM

11:55:29
Yeah.

KIM

11:55:29
(unintelligible) But she said he yelled over her name and said, hey, look at my medal.

KIM

11:55:35
And so, you know, just being a Louisvillian, I tell you what, it's so much pride and we went -- I always saw this little girl, you know. He's from Louisville. And I can grow up and do whatever I wanna do. And, you know, it was just very inspiring and I just -- he's just got so much charisma and so much life. And we went to his museum last year for his birthday and I was hoping we'd get to see him, but I think we got there later. You guys had been there in the morning, but I just appreciate all the work that you do and I just love hearing all these wonderful...

REHM

11:56:05
Oh, good.

KIM

11:56:05
...stories about him.

ALI

11:56:07
Thank you, Kim. Thank you so much.

REHM

11:56:09
I should say that, you know, hearing all these stories, I wish he -- I hope he's been listening this morning out there in Arizona or...

ALI

11:56:22
Actually, he's in Louisville today.

REHM

11:56:23
Oh, he's in Louisville.

ALI

11:56:24
He's in Louisville today.

REHM

11:56:25
Well, he's definitely listening, then.

ALI

11:56:26
Yeah.

REHM

11:56:28
But hearing all these stories must make you feel so good.

ALI

11:56:33
It really does because he's such a loved individual. And Mohammad, you know, that's really what he's about, about spreading love and joy. And he's, you know, well, she talks about the charisma and the humor and the wit. He had it all. He had it all. And it really left, you know, an impression on so many people and for them to have these Ali stories.

REHM

11:56:54
Lonnie Ali, she has the most stories of all. Thank you so much for being here.

ALI

11:57:02
Thank you, Diane.

REHM

11:57:03
My pleasure. Thanks for listening, all. I'm Diane Rehm.

ANNOUNCER

11:57:08
"The Diane Rehm Show" is produced by Sandra Pinkard, Nancy Robertson, Susan Nabors, Denise Couture and Monique Nazareth. The engineer is Tobey Schreiner. Dorie Anisman answers the phones. Visit drshow.org for audio archives, transcripts, Podcasts and CD sales. Call 202-885-1200 for more information. Our e-mail address is drshow@wamu.org and we're on Facebook and Twitter. This program comes to you from American University in Washington. This is NPR.
Transcripts of WAMU programs are available for personal use. Transcripts are provided "As Is" without warranties of any kind, either express or implied. WAMU does not warrant that the transcript is error-free. For all WAMU programs, the broadcast audio should be considered the authoritative version. Transcripts are owned by WAMU 88.5 FM American University Radio and are protected by laws in both the United States and international law. You may not sell or modify transcripts or reproduce, display, distribute, or otherwise use the transcript, in whole or in part, in any way for any public or commercial purpose without the express written permission of WAMU. All requests for uses beyond personal and noncommercial use should be referred to (202) 885-1200.

Our address has changed!

The Diane Rehm Show is produced by member-supported WAMU 88.5 in Washington DC.