Daughter of Muhammad Ali's explains Parkinson Disease to kids

    Rasheda Ali watched Parkinson's disease hit a mountain of a man she calls Dad. A nation watched, too, as Muhammad Ali's shaking and slurred speech became more noticeable.

    He was in his 40s. She wasn't yet a teenager. And to her, Dad just seemed a little older and a little slower, at first.

    Then, like the families of 60,000 people who are diagnosed with the disease each year, Rasheda read voraciously and quizzed neurologists -- for years. But it wasn't until her own children -- 4- and 6-year-old sons -- began asking questions about their grandfather that Rasheda sought a way to explain Parkinson's disease so children could understand.

    "I read about neurons and how they weren't producing the dopamine that's needed to send signals to the brain," she said. "You're studying a really complicated illness and an illness that there is no cure for, but what do you tell a 4-year-old?"

    When searches at libraries and bookstores netted nothing, she decided to write her own book. I'll Hold Your Hand So You Won't Fall: A Child's Guide to Parkinson's Disease, is written for adults to read to children. By the time it landed on store shelves in the United States this month it already was published in five languages, including Polish, Spanish and French.

    "I knew I wasn't the only person who was stumped when their children started asking questions, like "Why is Poppy shaking," said the young actress and mother.

    The Merit-published short story has multicultural illustrations and kid-friendly chapters titled "Tremors," "Genetics," "Shuffle Walk," "Slurred Speech," "Depression," "How You Can Make a Difference" and the like.

    It identifies 14 Parkinson's symptoms and offers questions and ways to discuss the topics with children who might be fearful or curious.

    Rasheda's famous fighting father, now 64, wrote the foreword, and her oldest son wrote the title, which appears on the cover in his handwriting.

    "My challenge was to find really simple words to explain Parkinson's. Children aren't going to hold back. They're just going to say it. You need to have answers," she said.

    Members of the South Bay Parkinson's Group, a support group that meets monthly in Redondo Beach, said the book can spark communication between all ages.

    "It's good for children, but for adults, too. That kind of information isn't given by the doctors," said Frank Wong of El Segundo. "It can be very frightening," he said as he stood stiff with the palsy caused by Parkinson's disease.

    Ann Cherevas' grandchildren are in their 20s, but she said Ali's book could help her tell the neighbor's children or grandchildren about the disease she was diagnosed with three years ago.

    "I think young children are very in-tune with their grandparents and some could be concerned about this happening to them if they don't understand," she said. "A book could help."

    The World Health Organization estimates there are about 6.3 million people worldwide with Parkinson's disease.

    Ali says she believes that air, environment and diet could be causing the incurable disease. She's agreed to funnel some of the profits from the book toward research that could determine a cause and cure for Parkinson's disease.

    It's a common misconception that Parkinson's damages the memory or is similar to Alzheimer's. Parkinson's disease is the most common neurological disease and it attacks muscles, motor skills and speech, but not the mind, Rasheda Ali said.

    "Janet Reno has Parkinson's disease. My dad, too. The late Pope John Paul II had Parkinson's. These are great communicators. The mind remains sharp and alert," she said.

    "Facial and body language become so much more valuable than any word. We give lots of hugs when we're together and the kids love to paint and draw near their granddad."

    The tremors and rigidity of Parkinson's often come in waves. Those with the disease call them "ons and offs," and each day is unpredictable. Ali's book offers advice on including children in daily activities with parents and grandparents who have Parkinson's disease.

    "On the difficult days my kids get out paper and pencils and they draw pictures with him. Dad's a great artist and that's their nonverbal way to communicate," she said. "For a 4- and 6-year-old it doesn't matter if Poppy talks or not that day. He's drawing pictures with them and that's cool!

    "And I know my Dad so well that he doesn't have to talk so much. I know what he's saying. When it's an off day, he just puts his hand on top of mine and I know he's proud of me."

  Parkinson's Disease | Today's News