Fighting for Awareness

FARAI CHIDEYA, host:

I'm Farai Chideya. And this is NEWS & NOTES.

As a fighter, Muhammad Ali left an indelible mark on America's cultural landscape. But for the past 20 years, he's been locked in a fight of his life with Parkinson's disease.

As they say, behind every good man is a great woman. In Muhammad Ali's case, it's his wife of over 20 years, Lonnie Ali. She's been his primary caregiver during most of their marriage and is now, for the first time, speaking out about her experiences at his side. She's teamed up with the Fight For MORE campaign to help educate patients and caregivers about all aspects of Parkinson's disease and treatment. Lonnie, welcome.

Ms. LONNIE ALI (Muhammad Ali's Wife; Fight For MORE Campaign): Thank you.

CHIDEYA: So, is this a road that you ever expected to travel and how hard has it been on you?

Ms. ALI: You know what? When I married Muhammad, he had Parkinson's disease, so it wasn't something that was unexpected. I will say it's been a different journey. And it's not one that has been real tumultuous, but it's been an experience - it's been a learning experience for me.

CHIDEYA: I can imagine that because of all the things he's done in his life and continues to do, this has been difficult for him and also must put a strain on how he sees himself and how you can deal with any emotional issues for yourself and him. How do you deal with the moments where you're down, where he's down?

Ms. ALI: You know, the one important thing that I will say to anyone who has a caregiver is to keep a positive attitude. Any time you find out that someone that's close to you, a loved one, a close friend, a relative, has been diagnosed with Parkinson's disease, just don't think the worst and realize that there is help out there. There is research going on. There's all kind of treatment options that are available. There's support. And, really, with regards to the neurological degenerative diseases, this is one of the most promising cures for diseases for - with Parkinson's disease.

With regards to ourselves of, you know, when we get down and low - you know, we probably have moments, but not many, because we are a very positive people. We really look forward to what we can do and what we - and not what we can't do. And Muhammad is just a fighter, you know?

This whole campaign, Fight For MORE, is so appropriately named. I mean, for me to be associated, you know, I really have to thank Valeant Pharmaceuticals for asking me to be the face of this campaign and giving me the opportunity to share with thousands of caregivers out there, of Parkinson patients, my experiences and what I have learned.

CHIDEYA: Tell me more about your fight, and why you took on this mission, and what you're hoping to do.

Ms. ALI: My fight is with the Fight For MORE campaign. As I said, it's a national educational campaign that hopes to empower the thousands of caregivers out there taking care of Parkinson patients with knowledge, resources, opportunity to connect with one another and form a Parkinson's caregiver community, to give them a source and a basis of where to go if somebody has been diagnosed with Parkinson's disease in your family or you know somebody. This is like one of the first steps, you know, to go to this Web site that's associated with this campaign. And that Web site address is www.fightformore.com, and learn more not only about the disease, but where you should go to get information and treatment options with regards to this disease.

And there's also a section on there of caregiver tips of what I have learned over the last 20 years of giving care to Muhammad. And my intent is to help share that information that I have gained over the last 20 years with others to help empower them to be better caregivers and to learn more about, not only the disease itself, but, as I said, the treatment options. There's new treatment options coming on the scene all the time in this illness. There's all kinds of new research going on as well.

So there's a lot of hope in this disease, of a cure being found, or something that will arrest it or treat it better than what's being done today.

CHIDEYA: How many people are we talking about who are affected either in terms of having Parkinson's or, by extension, I'm sure, that many more people are affected by living with someone with Parkinson's?

Ms. ALI: Research show there's about a million people who have been diagnosed with Parkinson's disease. I don't know how true that is because I'm meeting too many people all the time who were recently diagnosed or have been diagnosed. And we have this whole, huge, young adult onset that's coming up, you know?

I just recently got a call from a friend of ours, who had a friend whose daughter is 13-years-old and was diagnosed with Parkinson's disease in Southern California. It was just shocking to a lot of people, you know, because a lot of people think this is an old person's disease, but it's not. And you're finding that more and more that people are being diagnosed in their late 30s, you know, early 40s. And to me, that's still fairly, relatively young. So there's a lot of challenges there.

CHIDEYA: Lonnie, are there any issue specific to the African-American community and how people are dealing with Parkinson's?

Ms. ALI: Well, actually, what we've found out is that Parkinson's disease affects people of different races equally. There's not like, you know, more Caucasian people or people of European descent that have it more than people who are of African descent or Asian descent. It affects the races quite equally.

But it's interesting, because I've read recently that 22.4 million care-giving households of a nation's - and that's how many households in this nation there are of caregivers, 22.4 million, 10 percent of those are African American. So I find that very interesting. And what's also interesting is that it's always a challenge. As African Americans, we are so used to taking care of people all by ourselves. And it's very important to realize that, you know, we need help, you need help as a caregiver to bring in that family support, because most of the time when that happens, especially in the African-American community and household - and I don't want it limit it to that, but, you know, it takes - it's usually two incomes coming in. And when one is sacrificed, it makes it very difficult.

So we find, in the African-American household, that even though the caregiver is giving full time care to the person, they're also working.

CHIDEYA: Is there anything that the challenges faced by being a caregiver have given you that's positive?

Ms. ALI: Absolutely. You know, like - you know, I am a positive person. The fact that I can give my husband a better quality of life than he might have gotten normally, to me, is positive. For me to be able to provide some opportunity to put a smile on his face, to me, is positive. I'm always looking at what he still is able to do and his mission in life and achieving that mission in life and not what he's not able to do.

I am very aware that things have changed and that, you know, some things have to be limited now. But to me, it's important that as much as he can do, that he continues to do. And he's the very same way. He's a fighter, he believes in that, and he's never allowed this illness to define who he is as person or what he hopes to achieve as an individual before he leaves this Earth. He has a large legacy to leave. And Parkinson's, hopefully, research a cure fighting for more for Parkinson's patients and caregivers will be part of his legacy and part of mine.

CHIDEYA: Lonnie, is there anything you'd like to add?

Ms. ALI: Well, one thing I'd like to add is that it's important that people realize that a cure for Parkinson's disease is simply a function of money. And what's great about this Fight for MORE campaign that is if anybody goes to the Web site www.fightformore.com and signs up, Valeant Pharmaceuticals will donate $10 per person who signs up to the Partisan Unity Walk. So you can sit in the comfort of your home and still raise money for the research and cure for this disease.

CHIDEYA: Well, Lonnie, thank you so much.

Ms. ALI: Thank you.

CHIDEYA: Lonnie Ali is married to boxing legend Muhammad Ali. She's a spokesperson for the Fight for MORE campaign. She spoke with me here in our NPR West Studios. And if you want to find out more about the Fight for MORE, go to our Web site, nprnewsandnotes.org.

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