You have likely read the statistic that there are over one million people with Parkinson’s in the United States. Naturally, there are millions more people that care deeply about individuals living with PD. Rasheda Ali is among those many millions. She knows the tricks to help her father across a threshold. She in comforatable holding a trembling hand. Today, My Parkinson’s Info had the pleasure of talking with Rasheda Ali, and discussing her experiences as the daughter of a notable person with Parkinson’s. She generously shared insight into some of the lessons that she has learned while supporting her father, boxing legend Muhammad Ali.
Reflecting on her perspective of her father’s illness she states, “Everyone’s not going to go through the same journey. With my father’s slurred speech, naturally the challenge would be the inability to undersand what he says. His speech is clear and crisp on some days, while on other days it is more like a whisper. In our personal family life it forces us to communicate non-verbally. We naturally do a lot of hugging and kissing anyway, as a close family. Now, we do that even more. With my father we are focused on communicating non-verbally, with body language.
Ms. Ali encourages family members, “Go see your loved ones in person, rather than frustrating them on the telephone. Hugs and kisses communicate. My kids communicate with their grandpa by coloring and drawing. Create their own words and a universe where words aren’t really necessary.”
Parkinson’s disease has been a part of her father’s life since Ms. Ali’s gradeschool years. Later in life, as a mother, she struggled to explain her father’s circumstances to her sons. The challenge of educating her children about PD, inspired her to write a book that helps parents explain PD to children.
I'll Hold Your Hand So You Won't Fall: A Child's Guide To Parkinson's Disease, is the result of her labors. The American and international communities have received the book enthusiastically. It has been translated into five languages; and, Ms. Ali has had a chance to travel to many countries to promote it. She recounts an experience from a recent trip to Austrailia:
"There was a beautiful young girl from Perth, Australia who was diagnosed with dystonia at the age of 17. She is now 21 and has since been diagnosed with full-blown Parkinson’s. I met her and her fiancé. They wanted to have a family; but, they did not know how they would explain Parkinson’s to their kids. I was able to talk about it with her, and write her a special message inside the book. We have stayed in touch as friends."
Rasheda wanted to pass along her father's frequent message to PWPs around the world. The words that she echos on his behalf to My Parkinson’s Info readers are: "Never lose faith, and never stop living each day to the fullest extent possible. I wish all who find themselves part of this courageous battle much luck, and I send them my gratitude and love.”
You can also
click here to go to the NBC website. There are recent transcripts and video from Muhammed Ali in a recent television story with NBC's
Today and
Dateline programs. Rasheda also participates in the story, and has an opportunity to explain more about her recently published book.
