I'll Hold Your Hand So You Won't Fall: A Child's Guide To Parkinson's Disease

Ali, Rasheda

4.21

14 ratings by Goodreads

9781873413135: I'll Hold Your Hand So You Won't Fall: A Child's Guide To Parkinson's Disease

ISBN 10: 1873413130 ISBN 13: 9781873413135

Publisher: Merit Pub Intl, 2010

Inspired by her father's interaction with her children, Rasheda Ali wrote this book to address most commonly asked questions from children who may not understand why their loved ones with Parkinson's disease behave in certain ways. Written for adults to read to children, the book encourages dialogue through the use of colorful illustrations, situations depicting symptoms, and interactive questions. Medical facts are provided at the end of each page to help readers answer children's questions with greater ease and specific terms are explained in the margin on each page.What makes this book different from other books on Parkinson's disease is that as a tool to enable children to understand what is wrong with their loved one with PD, there is nothing in the marketplace quite like it. Te book will very likely become 'the' children's resource for information on Parkinson's disease.I'll Hold Your Hand So You Won't Fall: A Child's Guide to Parkinson's Diseaseis essential reading for children and families/caregivers with children that have relatives or loved ones suffering from Parkinson's

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From the Publisher:

An Interview with Rasheda Ali

Q: What are the main reasons you decided to write a book on this subject?

I hope that this book will encourage families to work together as a team by providing patience, love, understanding, and encouragement to their loved ones who should never be in this struggle alone. There is currently no other publication in the marketplace that speaks to children in their own language along with colorful illustrations on the subject of Parkinson’s disease. I’ll Hold Your Hand So You Won’t Fall: A Child’s Guide to Parkinson’s Disease is a book that can be read by adults to children or read alone by children. Adults will certainly glean information from it and in simple terms it will help to dispel myths and uncertainties that children may have when they see people with Parkinson’s disease.

Q: How much experience do you have with Parkinson's disease to write a book about it?

A: My inspiration for writing a children's book about PD was triggered by my children's interaction with my dad and their questions. I have many friends who have PD and based on my experience with them and my dad, I developed a guide that adults can use when trying to explain to children why their loved ones with PD behave in a certain way. At first, I did not have the right words to explain it to them so I started to do my own research about the disease. I wanted to be well informed before I explained to them why their grandfather has PD. I also used a book my dad gave me for patients and families on the disease. It turned out that while trying to educate them about PD, I was also educating myself. Through real-life pictures and common symptoms of the illness, I thought that I could also reach out to families who were just as perplexed as I when my son asked me, "Why is Popi Shaking?"

Q: Does your Dad have any of the symptoms detailed in your book?

A: PD is a disease that is unique to each if its victims. Some may start out with Parkinson's syndrome and have it for a very long time then gradually develop PD. Its effect on each patient is individual. My dad has had PD for over 20 years and he has been fortunate not to have suffered some of the symptoms shown in the late stages of the disease. My dad has been blessed by being able to do all that he wants to do and that is travel, meet with masses of people, and sign autographs for millions of fans without much difficulty.

Q: Do you think boxing caused Parkinson's Disease in your dad?

A: No one knows how one gets Parkinson’s disease. To date, there is no other boxer or athlete involved in contact sports of whom I am aware that has PD and therefore, the likelihood is slim. Research has proven that there could be a possible link between PD and certain environmental factors, such as certain pesticides that may trigger the disease. This is why PD is not a disease, which only affects the patient, but also affects the family. By funding research on Parkinson’s disease, we could find what role toxins, viruses or bacteria, and aging have on PD.

Q: You mentioned in your book about Heredity with PD? What is the likelihood of you getting the disease or anyone in your family?

A: There is a section in my book entitled, "Genetics" where a young boy is illustrated wondering whether he will get Parkinson's disease just like his Grandma. Inheritance does not play a dominant role in Parkinson's. It does not typically run in families but there are some statistics.

Q: Does PD affect the patient's thinking processes?

A: PD is a chronic disease that affects the nervous system, which will get worse over time. The brain can be sharp and aware while the body may behave in an uncontrollable fashion. If you knew anyone with PD, you would see that they are the same person they always were but you might notice that they shake a little or speak very softly. As indicated in the book, by giving all those who suffer from PD their independence, you will help make them feel better about themselves. The whole family can take part to help their loved one feel more useful and less helpless.

Q: Has your dad ever considered undergoing the risky Deep Brain Stimulation Surgery?

A: Candidates for this type of surgery are Parkinson’s disease patients that have severe tremors that cannot be controlled with medications, or dyskinesia, which is a side effect from certain drugs. I mention in the book to all caregivers, that one must choose a doctor specializing in PD and the patient must be evaluated only by a neurologist with expertise in this type of surgical procedure. Please use Parkinson’s disease support groups and organizations available as a guide. Don't risk your loved one’s life on inexperienced doctors.

Q: Does it frustrate you when you see your dad suffer from such an awful illness?

Your sympathy is misdirected. It should not be wasted on someone as fortunate as my dad. He has lived with PD for over 20 years and I believe because of his health, his positive mental outlook on life and his acceptance of the disease, he has been able to overcome the inconveniences of the illness with much success. My dad has done very well with PD. He has not suffered like many people I have seen during my research into the disease.

Q: What is the life expectancy for PD?

A: With proper treatment for the disease, the life expectancy and death rates are the same for PD patients as those without PD.

Q: What is your advice to those who have just found out they have PD?

A: First, I would say don’t panic, you are not alone. My book gives advice to those living with PD and also to caregivers. I would first learn about the illness and then tell your loved ones about it. This book will help you explain the illness to your children or grandchildren.

About the Author:

Rasheda Ali is a tireless caregiver advocate on behalf of families who are fighting Parkinson's Disease. This debilitating condition afflicts her father, the legendary boxer Muhammad Ali, former three-time World Heavyweight Champion. She served as Honorary Chairperson on behalf of the Florida Coalition to Cure Parkinson's Disease in 2002 and 2003 and is involved with leading Parkinson's Disease organizations.

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