[Stitcher]

Daughter of famed Ali helps kids understand Parkinson's

By Christina Cepero
Originally posted on May 05, 2007
http://www.news-press.com/apps/pbcs....0102/705050304

Christina Cepero/news-press.com
Rasheda Ali, famous boxer Muhammad Ali's daughter, talks to fourth-graders at Spring Creek Elementary about Parkinson’s disease.

One of the seven daughters of three-time World Heavyweight Champion Muhammad Ali recently visited Spring Creek Elementary in Bonita Springs.

Rasheda Ali, writer of "I'll Hold Your Hand So You Won't Fall: A Child's Guide to Parkinson's Disease," talked to fourth- and fifth-graders April 25 about the disease that affects her 65-year-old father.

Her visit was part of a sensitivity awareness program involving aging sponsored by Lee Memorial Health System.

"Any time that we can raise someone's awareness to something, it's enlightening and it promotes understanding," Principal Karen Leonardi said.

Pam Derhammer of the Parkinson Association of Southwest Florida read Ali's book to the children Monday at the school's Roaring Readers family reading time.

Ali said she researched, wrote the book, and began speaking to children around the world because she realized she didn't know how to explain Parkinson's disease to her children, now 6 and 8.

"They had questions I couldn't answer," she said.

She said that because of her father's difficulty talking and writing, the family started to communicate by coloring and drawing together.

"I think we grew closer as a family," Ali said.

"The more you communicate, the more you learn about this condition, the more you understand your loved ones better.

"We're in this together."

She described the four signs: tremors, rigidity, imbalance and Bradykinesia, which means one has a shuffle walk.

She asked fourth-grader Shianne Silvey to pretend she had cement blocks stuck to her shoes to demonstrate a shuffle walk.

"It's hard to pick your feet up," Ali said.

She explained that the dopamine chemical works as a messenger from the brain to the limbs.

She asked fourth-graders Eric Lopez and Kellie Torocco to pretend to be dopamine and the brain, respectively.

She pretended to be a leg.

She moved when Eric, or the dopamine, asked Kellie, or the brain, to move the leg.

Then she asked Eric to sit down.

"When you have Parkinson's, the dopamine is not there to tell the brain to move," she said.

Ali said 1.5 million people in the United States and 6.5 million worldwide have Parkinson's.

On PowerPoint, she showed pictures of her dad, actor Michael J. Fox, the late Pope John Paul II, singer Maurice White of "Earth, Wind and Fire," the late country singer Johnny Cash, former U.S. Attorney General Janet Reno, the 33rd President Harry Truman and evangelist Billy Graham.

"They don't really have anything in common except for being famous and having Parkinson's," Ali said.

She said anyone can get it at any age, but Parkinson's symptoms worsen as a person ages.

She wore a pin with a red tulip, the international symbol for Parkinson's disease awareness and support.

"The more we know about Parkinson's, the more money and research we'll get and the faster we can find a cure for Parkinson's," Ali said.

Ali spoke about her father's positive attitude in boxing and in life.

"He believed in his heart he was going to win and he would actually win," Ali said.

"'You got to believe it, feel it."

After he found out he had Parkinson's at age 42, he came to accept it and said his life was just beginning, Ali said.

"He has not one regret."

"He said, 'I got Parkinson's for a reason.' "

Ali added that her father thinks boxing introduced him to the world but Parkinson's has allowed him to change people's lives.

[Teretxu]

Thanks Carolyn!
How terrible it must be for a child to say to a parent or grandparent: "I'll hold your hand so won't fall." And yet, how much more tragic it is for that parent who can't protect and shelter his/her child to hear that sentence!

[BEMM]

Thank you Carolyn, I'm going to see if it would be a good book for the grand children to read. I want to see the book to make sure it will not frighten the children. I don't want them to be afraid they may have inherited a tendency to develop PD.
And Teresa, you are so right, it must be so hard for the young PWPD to cope with both the illness and with all the emotions of younger children who see a parent struggle with PD. I am so grateful that my children were adults before my symptoms became debilitating.
I am not at all happy that both of my daughters have explained my illness to their children as just a sign of old age. It makes me feel ancient and wretched when the little ones borrow my cane and say, "I'm old, like Mormor!"
It is easier for the parents to say I'm just old. No explanation is required, and no fear is elicited because old age is thousands of years in the future when you are 4 years old. The little ones don't yet know that I'm the youngest of their grandparents.
However, one of the little ones was astute enough to ask me last week end when we visited, "Mormor, are your legs very old?" and I explained to him that they were not so old, but they had Paralysis Agitans.
Parkinson is a person's name, it says nothing to a child, but Paralysis Agitans is a name just for this illness.
His Mum was not happy that the subject came up, she prefers to pretend that I'm fine, it is her way of coping with my illness. She wants to know as little as possible about it. If the book by Ali is good, then maybe the little ones will teach their mothers that it is not because I'm old that I shuffle.

birte

[Thelma]

I have no problem with the children and grandchildren learnilng about Parkinsons but why scare the hell out of all the kids not related to the disease.

What if all of the diseases started doing this. How would it benefit the children in the future.

They have so much to look out for now?

[Todd]

Kids need to know and be told in honest, age appropriate language. Knowledge is power, regardless of age. Plus, kids are much smarter than adults give them credit for. They know when something is wrong and just need someone to explain it to them in a developmentally correct manner, with honesty and kindness. And really, kids do just fine with the information once it's given to them the right way. I've seen it literally 1000's of times in my work as a Certified Child Life Specialist.

By the way, Rasheeda's book is, in my opinion, very well done.

[Thelma]

I agree with you Todd in a sense but when the subject is not in their life experience is it not better to not expose them to it. There are many diseases and conditions and what if all used the same approach. Is this not detrimental to their sense of security in their own lives to come.

Don't you think that a child can know so much and assimilate that knowledge as a possibility and not seen it as a probability or vise versa. who will be around then when they need clarification that it is not a portent for them.

Kids are smart but kids are pliable and can go in directions that can not be fortold.

Or am I wrong.

[BEMM]

I think you're right, Thelma. There is no reason to explain PD to children who have no need to deal with the illness. It is adults who need to understand our plight.
In BrainTalk there is a sad post about the subject, titled 'Need advice'. TtoyL has posted a really good answer, as has Lindylanka. My answer is exactly in agreement with Thelma's views on this:

"Hello Shawn, I'm very sorry that you have PD at so young an age, and I'm sorry your little girl has to deal with a little too much truth a little too early. Like ToyL I think I have had PD most of my life, and I am very grateful that no one ever noticed the signs, and that I had no idea that there could be another reason for my rigidity and clumsiness other than that I was just a born klutz. I lived for years without knowing the unpleasant and frightening truth.
Many facts and perfect truths are better left unsaid. When you explain PD to a child you must leave out the scary parts.There is no need for your children to know more than that your arm(s) and leg(s) keep forgetting how to do what your brain tells them to do. The telephone lines are crossed and down, and your messages are not going through from brain to body.
Your wife panicked, and confided in the wrong person - had she taken time to digest the news that her husband has PD, she would probably have thought better of it, and not blurted out her own concerns to a child..........."

[Todd]

I'm certainly not saying that we need to GRAPHICALLY explain whatever disease we're discussing to children, or to explain any and all disease to them in this manner.

What I said was, if there is a child that is affected by a loved one with PD, or if an un-related child asks "why are you shaking?" then an honest, age and developmentally appropriate answer is in order. Simple really.

And as for sheltering our children, I understand the good intentions but it eventually can cause far more harm than good. Children, and their brains, are flexible and pliable, particularly at young ages, and research has shown time and again that children exposed to the truth in honest, heartfelt, developmentally appropriate ways do just fine and turn out to be well-adjusted people.

We seem to fear, as adults, that the truth is harmful to children when it is, in fact, freeing and empowering for them.

[Thelma]

Well Todd

I will be 75 years young in August and had 4 children of my own by the time I was 23. I have seen the ravages of what some refer to as truth in the children of many ages and it is not always beneficial to them no matter what the so called experts say.

Children can absorb a lot of information and sort through that what pertains to themselves personally and ignore the rest. True NO

They trust adults and believe that what they are saying is right and truthfull. that is good, right?

In a way it is but are the adults to be belileved and relied upon as being guides. I wish it were true but it is not.

The adults of today are the children I have seen from babies to what they have become now.

Am I disappointed well you had better believe me that I am. These are the cute little babies that I watched become the self indulgent, drug ridden, alcololic inclined human beings that permeate the political and industrial as well as the business areas that are causing those who care about the human race to sit and commisserate together without a hope in hell of reaching a conclusive decision that can effect for the better in our world.

I am not a dooms day philosopher but the writing is on the wall.

When you take the worries of the world and put them on the backs of children then the very premise that childhood should be a growing area for the calamitous future they are going to face will fall into oblivion.

So then where will the next generation look to find solace. Into the prick of a needle or the neck of a bottle.

Information is not the necessity of life. Periods of growth are. the first to just be loved and taken care of. The next to give the basics to learn to trust and care outside the family circle and then the periods of learning of what we have and the value it contains for all.

After that we can show and tell them of the myriad of falls and puddles and raw heartbreak that can befall them as they continue on thils journey of llife.

Then they can accept it as a maybe.

because it is the kids with the maybes of the world that are going to change everythilng.

Maybe for you and maybe not for me but maybe for their kids.

And that is how progression is manufactured.

Jeez you must be sick of me but I do enjoy what you and everyone here has to say.

[Todd]

Well, I enjoy what you and everyone else here has to say as well. This is by far my favorite place on the web for PD.

I have a far different take on the subject. That being said, I guess we respectfully agree to disagree. All the best...