In the Hot Seat: Her book aims to educate about Parkinson's

Published 12:00 am PST Friday, January 12, 2007
Story appeared in SCENE section, Page J3
http://www.sacbee.com/107/story/105834.html

Parkinson's disease has made front-page headlines, especially because of actor Michael J. Fox's efforts to put a face -- his own -- on this devastating illness.

Now, a local woman's experience with Parkinson's comes to the forefront inthe form of a book, "My Grandpa Has Parkinson's."

Margot Grant Evans lost her father, Ivor McPherson Grant, to the disease on Dec. 21, 2000.

She started writing the book in 2004. It was published last year by Vantage Press. One of her goals was to help her oldest child, Grant, understand what was happening to "Grandpa."

Today, the most important goal is raising funds for the Michael J. Fox Foundation for Parkinson's Research (www.michaeljfox.org).

To share more of her poignant story, we asked Evans, 41, to get comfy in the Hot Seat.

Q: When was your dad diagnosed with Parkinson's and how did it impact your family?

A: He had it 10 years. My parents were living in Huntington Beach. Interestingly, he was diagnosed the same year as Muhammad Ali, Pope John Paul and Michael J. Fox. I have three older siblings (all living in California), and I was married and living in east Sacramento. What I learned was that, for as long as our mother was able to care for him, it became so important to find the right care for him the last three or four years of his life.

Q: How old was Grant when your father died?

A: My son had turned 2. He was asking questions before and after my Dad died. Like, how come he wasn't in the same house as Nanna. My father was in a nursing home, and there's such a striking difference to children when they visit. The residents often are in wheelchairs. They don't move much. They stare. He really saw my father slowing down and showing the physical effects of the disease.

Q: How did his passing affect you?

A: He was 72 and, being the youngest, I really looked up to my father. He was all-encompassing and very protective. Then this reversal of life happens, and he needs us to take care of him. There's not a day that I don't think of him. And that's why it was so important that I find a way to have a voice in getting the word out about what I call the "Parkinson's family."

Q: How did the book deal come together?

A: We put up the money and found Vantage Press, which also supplied the illustrations. It's strictly to raise funds for research. Once we sell 50 books, Vantage will write a check to the Fox foundation.

Q: Do you have other children? And what's daily life like for you?

A: Grant is now 8 and in second grade. I have 3-year-old twins (a boy and a girl). My husband, Chris, is an oncologist and chairman of the urology department at UC Davis. I'm a nurse, but now I'm at home with the kids, serving as a homeroom mom and art docent for Grant's class.

Q: Any hobbies, favorite movies?

A: Growing up in Huntington Beach I loved the beach movies. I play tennis. But what we love the most -- as a family -- is to go to Tahoe. Grant is on the ski team, and we get energized there.

For more information: "My Grandpa Has Parkinson's" costs $7.95 plus $3 shipping. Call (800) 882-3273.

-- Leigh Grogan

Reach her at lgrogan@sacbee.com

blueline2.gif

Amazon.com
http://www.amazon.com/Grandpa-Parkin...e=UTF8&s=books

blueline2.gif

Team Fox for Parkinson's Research

Excerpt from September 2006, The Fox Team News
http://www.teamfox.org/atf/cf/%7B718...Newsletter.pdf

Calendar Highlights:
"Author and Team Fox member Margo Grant Evans will donate 100% of the proceeds from the sale of her self-published book 'My Grandpa Has Parkinson's.' The book highlights a child's journey through understanding aging and illness. 'My Grandpa Has Parkinson's' is dedicated in loving memory to her father and written to help other parents confront the challenge of explaining Parkinson's to their kids. For more information contact Vantage Press 800-882-3273."

blueline2.gif

thank you carolyn.

my dad has pd. there was never really an issue of explaining to my daughter who was 7 when he got dx. that is her poppa. no questions. they have a very special bond.

the questions have been from my grandson. he is 5. he was a baby when pd hit hard and the changes started. he asks the questions now. my father has the mask and at times shuffles.

this book might be just the thing for poppa to read to grandmonkey.

Muhammad Ali's Daughter Writes Children's Book on Parkinson's

Rasheda Ali Wants Book to Give Children and Families Hope

http://abcnews.go.com/GMA/AmericanFa...=913265&page=2

July 21, 2005 — Rasheda Ali and her children were visiting with her famous father, Muhammad Ali, when an innocent question sparked an awkward moment.

"Why is Poppy shaking?" her son Nico, now 4, asked.

Rasheda Ali was not sure how to explain to her toddler that his grandfather suffered from Parkinson's disease, a progressive nervous condition associated with the destruction of brain cells that produce dopamine. The incurable disease, which the World Health Organization estimates affects 6.3 million people worldwide, is characterized by muscular tremors, slowing of movement, partial facial paralysis and weakness.

"At the time I was off-guard and I didn't know what to say," Ali said. "So that inspired me to research, learn a little bit more about the illness, so that I can answer him correctly."

The result of her research is "I'll Hold Your Hand So You Won't Fall: A Child's Guide to Parkinson's Disease."

Nico and his brother, Biaggio, 6, designed the cover and Muhammad Ali wrote the foreward.

The book addresses 16 of the most common Parkinson's disease symptoms that frequently concern children who may not understand why their loved ones with the disease behave certain ways.

The first signs of Parkinson's disease that Rasheda Ali noticed in her father were a change in speech and a slight trembling of his hands.

"When I was about 11, we just saw Dad's voice soften and he would walk a little slower and then of course we would see the tremors," said Rasheda Ali, one of Ali's seven daughters. "But it didn't strike me as odd. I just thought my dad was getting older."

As the years passed, Parkinson's disease robbed Muhammad Ali of two of the greatest assets he relied on to win over the public as a young boxer — his physical prowess and verbal sparring savvy.

But Ali has never relinquished his mental toughness.

"He has a strong mental ability and I think that's important with Parkinson's," Rasheda Ali said. "When you have an illness that is not treatable and there is no cure at this time, you have to mentally be prepared for that. It's going to be a long journey and my dad has such a strong positive mental attitude, and he shares that."

Muhammad Ali has shared his positive attitude as a humanitarian and a politician, most recently traveling with the United States entourage to Singapore as part of New York's failed Olympic bid.

Ali also shares his perspective with his grandchildren.

"When my kids draw and paint and color with their granddad, they almost create they're own universe when they're together and I think that's important," Rasheda Ali said.

She added the affection that is abundant within the Ali family is key.

"We hug and kiss a lot, and I think that's important with Parkinson's — that you show your love and emotions nonverbally," Rasheda Ali said.

She said the most important message she hopes families take from her book is to never give up hope; the medical community continues to make breakthroughs all the time.

It is a message her father also shares.

Muhammad Ali writes in the book's foreward:

"What's important is to never lose faith."

blueline2.gif

I'll Hold Your Hand So You Won't Fall: A Child's Guide To Parkinson's Disease (Hardcover)
by Rasheda Ali, Muhammad Ali

http://www.amazon.com/Hold-Your-Hand...e=UTF8&s=books

blueline2.gif