Talking With Rasheda Ali-Walsh: Helping Children Cope with Parkinson's
Rasheda Ali-Walsh and Muhammad Ali
Of the many brave things Muhammad Ali did both and out of the boxing ring, one of the most courageous was putting his body -- once a symbol of athletic power and grace -- into the public spotlight as it shows the increasing effects of Parkinson's disease.
Since he was diagnosed with Parkinson's in 1984 at the age of 42, Ali used his fame and public image to raise millions of dollars for diagnosis, treatment, and research of Parkinson's and to provide support to its sufferers and their caregivers through the Muhammad Ali Parkinson Center at the Barrow Neurological Institute in Phoenix. Ali Care, a component of the site, provides financial assistance to people with Parkinson's who have limited financial resources or no health insurance.
Rasheda Ali-Walsh , Ali's daughter by his second wife, Khalilah Camacho Ali, was just 14 at the time of his diagnosis and not that close to her father, who by then was remarried and traveling the globe for his humanitarian and political work. As she grew up and grew closer to him, and as his disease progressed, she realized that her own young children had many questions about the illness that made their grandfather sometimes tremble or slur his speech, or not talk at all.
Ali-Walsh wrote the colorful, upbeat book I'll Hold Your Hand So You Won't Fall: A Child's Guide to Parkinson's Disease in part to answer their questions. Including a foreword by Ali, the book explains and destigmatizes common symptoms (such as the way someone with Parkinson's may "freeze" before a doorway) and provides helpful hints (whistle or gently tap on their foot when this happens), as well as addressing children's fears that the disease could be passed on to them.
Ali-Walsh is an international speaker for Parkinson's awareness and an impassioned activist for research to find its cure. She also has her father's inspirational gift for bringing optimism and spiritual commitment to coping with the disease. She spoke to Caring.com about her book, her father's illness, and what it will take to find a cure for Parkinson's.
Did your father suspect Parkinson's when he first had tremors and problems with his speech?
At first my father didn't think it was anything, because when you're a boxer, things happen in the ring and eventually go away. But he had tremors that didn't go away. He went to several doctors who didn't know what it was. At that time, in the '80s, people didn't know as much about Parkinson's and they diagnosed him with other things -- a lot of people thought he couldn't have Parkinson's because he was very young.
Then a friend recommended that he go to a movement disorder specialist in New York, Dr. Stanley Fahn, who was and still is one of the leading Parkinson's experts, and he officially diagnosed it as Parkinson's.
Was he still able to work after his diagnosis?
He had retired from boxing in 1981. But he still worked for 10 or 15 years -- actually, up until about a year ago. He constantly worked, even with Parkinson's.
Is that unusual?
It's very unusual from what I've seen in traveling and meeting a lot of people with Parkinson's. He's been very lucky in that the progression has been very slow for the 24 years since his diagnosis. Some patients progress significantly within a year's time, where others can still work for many years. It's very sad to see young families going through this. You know, you think you're going to retire in your 60s and you find yourself retiring in your 40s.
Do you think Parkinson's is hitting people younger now?
Yes, it is. They used to call it an old person's disease. It is an age-related disease because the average age of onset is still 60. But it's not uncommon to see people in their 30s or 40s being diagnosed with it. I think it's because of environmental factors. That's why it's important to raise enough funds to be able to determine what's causing younger people to get Parkinson's.
There is a genetic component too. I have a chapter on that in my book. It's something that families worry about; I thought about it. The numbers aren't really that large -- maybe 7 to 9 percent -- but there's a Parkinson's gene and it's a factor, especially when people get the disease young.
For many years, you weren't very close to your father. Has Parkinson's had any effect on your relationship with him?
When I was young, we'd see him on spring break, summer break, birthdays, or other special occasions. I wasn't happy about that, but my dad was out there changing the world. I understood at an early age that I had to share him with the world because even in the heyday of his career, when I was three or four years old, we couldn't see him because he was out fighting. And then after he retired from boxing, he was still out there trying to make a difference and doing some large charitable works in America and abroad.
I didn't really grow close to him until I was out of school. And learning about Parkinson's actually drew my dad and me closer. Doing the book, with him writing the foreword, was a project that we shared, and I was really happy to have that. As terrible as it is, you can take good out of anything that on the surface appears to not be good.
What's been the most difficult part of seeing your dad go through this?
My dad doesn't like to take his medicine! I've never tried Parkinson's medicine, but I hear it's very bitter and nasty. I hate to see that he has to take it, because he hates it.
But I've never seen my dad complain. He's always been a positive person. He lost fights and I'd ask him, "What do you do when you lose?" And he'd tell me that everybody loses in life, so move on. That's his whole philosophy on life -- he had it in the ring and he has it now.
He's always had this "never look back, only ahead" attitude. I think if he didn't have that attitude to begin with, it would have been very difficult for him to go through Parkinson's as long as he has. He thinks that you have to accept that it's the way it is and let's enjoy our lives.
For many of his fans, seeing him light the torch at the 1996 Olympics was particularly poignant.
I didn't know my dad as Cassius Clay. A lot of fans who look at him and say, "Oh, my God, this is devastating," grew up with Cassius Clay, a loudmouthed boy from Louisville, Kentucky. And they cried when they saw him light the cauldron at the Olympics because they feel like they know him.
My dad doesn't want anyone feeling sorry for him. One of his quotes is, "It doesn't matter what anyone else thinks. What matters is what you think." He never let anyone define who he was.
Does he have hope that there could be a cure in his lifetime?
In his early boxing years, your dad was known as an angry young man. Of course, that was partly a response to all the injustice that he saw. Was he angry when he discovered that he had Parkinson's?
Oh, God, no. When he was 18, he was an Olympic champion, and when he came back to Louisville, he couldn't eat in a restaurant. Of course he was angry. He had a reason to be angry.
But when he was diagnosed with Parkinson's, he wasn't angry at all. I'm not going to say that he embraced it, but he accepted it.
He feels that everything happens for a reason -- God gave him this for a reason -- so he's going to do good by it, to use his name to help people with it. He's always looking at the bigger picture. I think he feels that boxing only introduced him to the world; having Parkinson's was the big picture.
What do you mean that having Parkinson's was "the big picture"?
Boxing was a small part of his life. He's said, "God gave me this gift as a boxer to make me famous; now I can use my fame and do good things with it." And I think when you look at my dad's entire life, what he's done since he retired from boxing 30 years ago, that's what he's done.
He and Michael J. Fox have both used their names and notoriety and power to help focus on Parkinson's research and help patients and organizations create awareness about the disease. Michael J. Fox has done a terrific job. A lot of people don't come forward to talk about it. They both gave a voice to people who didn't have a voice.
Tell me about what inspired you to write a children's book about Parkinson's.
I honestly have to say that I wasn't afraid when my father was diagnosed, because he didn't have any really strong symptoms. Yes, he was shaking a little bit and spoke very softly, but he still took us out for ice cream and all that. I didn't have questions and my parents didn't have answers then.
But my two sons -- Biaggio and Nico -- are seeing the more advanced effects of Parkinson's, so they started asking questions at four and six years old. They saw the more pronounced shaking and slurred speech. And when they had questions, I truly did not know how to answer them.
My dad sent me a book by a doctor, and my mom sent me another book, but I really found them difficult to read. The book that my dad sent me was so complicated. I'm a college graduate, and I thought, how do normal people read this? It was inundated with medical jargon. So I actually started to write the book to explain things to my boys, and then I thought there are other parents just like me who could use this help.
Has your children's understanding of the disease changed as a result of the book?
They're a lot more intelligent when they see people with any condition that makes them look different from us. When they see someone like that, they can often identify it and understand that the person has a condition out of their control that may require medical help. My goal in writing the book was to help them learn about Parkinson's, but I think it also made them more intelligent and compassionate about people with other conditions or disabilities.
When I speak at schools, I try to leave something of that with the children. Even if they've never heard of Parkinson's, I think they can take the tools and advice I give them and apply it to any condition that may be challenging them or their families. Kids need to learn to show compassion when someone doesn't look the same as us. My kids have seen people who walk like their Poppy, and they'll say, "Oh look, he has Parkinson's." And it's good for them to see that other people are like their Poppy.
What is their relationship with their grandfather like?
They love to be with him because they have common interests -- coloring and drawing and telling stories. My father loves those things. Because one of my dad's symptoms is slurred speech , it's sometimes very difficult for him to speak, so they color and draw together, and that's a great nonverbal way that they can communicate. They have something they can do together without always having to talk, because that can't always happen. For people with slurred speech, every day is different. But you can always color!
What does your father do to take care of himself?
He works out in the gym a lot, five days a week, and he gets the massage therapy he needs, and that really helps. When you're in the late stages of Parkinson's, it's really difficult to walk, to get that blood flowing in your legs. I think massage therapy is very important because it not only increases the blood flow to your limbs, but it also strengthens the muscles. Speech therapy is very important if you have slurred speech. As I mention in my book, diet and exercise are also very important. He's getting incredible care, and I think it has helped him tremendously.
Your father has always been sensitive to the fact that many others don't have access to quality care.
My dad was one of the lucky people who didn't have a problem financially. That's why he came up with Muhammad Ali Parkinson's Center in Phoenix to help people who do. A lot of Parkinson's patients find that their insurance doesn't pick up their medications, or their spouses have to quit their jobs to take care of them. Parkinson's poses a large strain on the family and on the community. It costs Americans millions to be able to support people with Parkinson's, and the figure is constantly growing.
About 11 years ago, my dad started to raise funds every year via Celebrity Fight Night. Eighty percent of the funds raised there go to the team of neurologists and scientists who work for the center, who diagnose and treat Parkinson's sufferers.
The center also has a series of programs -- like Parkinson's 101, which helps educate the families of people who have just been diagnosed and know nothing about Parkinson's -- and activities that incorporate exercise to help motivate patients to keep exercising.
Ali Care is another outreach program -- kind of service support for families. Lonnie, my father's wife, was instrumental in creating it. All these services are free to the families and patients.
You're also quite a crusader on behalf of people with Parkinson's.
I don't want people to think they're alone. I'm doing this because I know my dad would be doing it if he could. And I have an ulterior motive -- I need a cure for Parkinson's soon.
As an advocate for stem cell research, do you have high hopes for its future?
I do. I know that Michelle and Barack Obama are big stem cell research advocates. I pray Obama is our president because I think it's going to lend a lot of support and hope for families who are going through Parkinson's and other neurodegenerative disorders -- and there are many. Stem cell research poses great hope for people with ALS, Lou Gehrig's disease, spinal cord injuries, diabetes, even heart disease.
Do you think doctors still don't always catch Parkinson's early?
A friend of mine was diagnosed with Parkinson's here in Las Vegas; actually, he wasn't diagnosed -- that was the problem. He went to his general practitioner because he had symptoms of Parkinson's. But he was on medication for something unrelated, and his doctor said he didn't have it.
He said my friend was shaking because of the side effects of the medication. When I first met him, I knew immediately that he had Parkinson's, but there are a lot of doctors who are still misdiagnosing it.
Do you advocate early testing?
I do, because there are certain medications, such as Azilect, that have been shown to slow the progression. Azilect is one of the few treatment options for all stages of Parkinson's disease. We are still trying to find ways to stop the progression through stem cell research, but if we can detect the loss of dopamine in the brain earlier, it's so much easier to slow its progression.
Also, by the time the symptoms start, people have had Parkinson's for years, so many people who are related to someone with disease get tested because they just want to know.
Do you have any final advice for caregivers to someone with Parkinson's?
Whenever I see a caregiver, I tell them, "You are a hero." Just make sure you have help and take breaks. Get the support you need from your family, because that will determine how well your journey is going to go.
My advice is to love unconditionally. I know that's simple for some people, but for others, it's work. Be very understanding, be very patient, and laugh a lot. That's what we do. I know it's a cliché, but laughter is the best medicine. Laughter takes the edge off of a lot of frustration. Enjoy the little things in life, because one day you'll look back and realize they were big things.
Very real and easy to understand. My Mum suffered Parkinson's disease for many, many years before her death 3 years ago, she was 82 when she passed. Thank you for this and for all the work you do to help in this insidious disease, I hold you and your Dad in the highest esteem, bless you all Claudette
Very informative. Thanks. Jeanette
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