Michael J. Fox puts face to Parkinson's

For a person with Parkinson's disease, trying to relate to another person with Parkinson's is like taking a bath in someone's leftover bath water. You know you'll emerge a cleaner person, but the process still leaves you feeling somewhat dirty. This is the way I approached Michael J. Fox's new book, Always Looking Up: The Adventures of an Incurable Optimist (Hyperion, $33.99), a follow-up to his bestseller Lucky Man (Hyperion, 2002).

In the prologue, Fox describes how he awakens and transitions from a peaceful sleep into a twisting, twitching, contorted mass of gyrating feet, limbs, head, and shoulders. My symptoms are the opposite of his. I struggle to move first thing after waking up, and my overall pain and stiffness only abates through a combination of Levodopa, Rasagiline, and Arthrotec and placing a cold compress on my lower back, plus two cups of strong coffee. After an hour or so, these measures kick in and I shed my Frankenstein cloak and emerge a wholly functioning adult. As Fox writes, “One of the biggest revelations was, in spite of all our common travails, how different our experiences could be. Parkinson's disease takes many forms—for some reason, everyone gets their own version. A drug therapy or surgery that works for one may not work for another. Our reactions—emotional, psychological, and physical—vary greatly, and this obviously affects our ability to cope.”

The Burnaby-raised actor's new book is primarily concerned with the four pillars on which his life has been built to this point: work, politics, faith, and family. Mix in a large helping of optimism, and Fox has taken a negative and turned it into a positive. This has effectively helped him avoid letting Parkinson's define him—and has instead enabled him to redefine the terms of his illness.

I have been following (you could say mildly stalking) Fox's Parkinson's journey ever since I heard of his diagnosis. We have some things in common. We're both from the Lower Mainland, and we're both young-onset Parkinsonians—he was diagnosed at 29, and I was given a life sentence at age 41. (The average age of onset is 60.) He's had Parkinson's for 18 years, and I'm coming up to the 16th year since I was diagnosed. Setting aside fame and fortune, we're both incurable optimists and have a solid network of family and friends on which we've built a foundation. We also both draw inspiration from our role models. Fox cites Lance Armstrong, Christopher Reeve, and Muhammad Ali; I'd like to offer up Terry Fox and Rick Hansen as two fine local examples of perseverance in the face of mind-numbing obstacles.

I met Fox at the 2007 Michael J. Fox Theatre fundraising golf tournament. I was golfing in a group one hole ahead of him, and when there was a backup at one of the tee boxes, my playing partner and I were able to coerce a startled Fox and stoic Cam Neely into posing for a picture with us. Unfortunately, the snapshot only gives a nice clear picture of our golf shoes—Fox's are the smallish ones in the middle. Later that day at the banquet and auction, fuelled by an excess of dopamine, I became the proud owner of a $900 copy of Hollywood Dads, a photographic collection of famous fathers. Fox and his brood of four are prominently displayed on its cover. Afterward, I trailed him as he was leaving the event, and he willingly signed my copy: “Rex, we will get this done!”

As evidenced by the recent reversal of the ban on the funding of embryonic-stem-cell research, Fox and his foundation have been getting it done. Ironically, the ban has led to exploration of other types of stem-cell research and the discovery that stem cells taken from the skin may be more productive (and far less controversial) than embryonic ones.

It amazes me that Fox is able to maintain such a busy schedule, but I guess the response he receives gives him a great deal of energy and zeal. He must be aware of how upsetting and disconcerting his appearance can be at times, as his head bobs and he wiggles and squirms in his chair due to the medication. This is the choice he makes when he blocks the real symptoms of Parkinson's—the slowness of movement, the freezing spells, the slurring of speech, the masklike face, the lack of balance. He has chosen to overmedicate in order to get his message across. As he says in Always Looking Up, “The notion of hiding—this is what struck a nerve. Feeling the need to hide symptoms is so key to what patients of all conditions, but particularly Parkinson's, have to face.”

Fox has been the face of the disease for years now, and the optimism and fervour he brings to his quest to find a cure for Parkinson's have emboldened many of those who suffer in silence behind closed doors.




May 3, 2009 at 2:09pm

Thanks for this insightful and informative article. I hadn't realized the connection between stem cell research and curing Parkinson's. Hopefully this reversal on funding stem cell research will speed finding a cure for Parkinson's and other diseases.


Nov 11, 2009 at 11:02am

I was sent this by a friend. It touched my heart and I wanted to pass it on. Please have a read.

My name is Steve Alten, I am the best-selling author of ten novels, including the MEG series, DOMAIN, The LOCH, and GOLIATH. Two years ago I was diagnosed with Parkinsons Disease. I was 47 at the time, with no family history. Parkinsons is a degenerative disease that causes tremors and muscle rigidity. For me, the symptoms affect my dominant right side. My arm no longer swings freely when I walk, and doing certain activities can be challenging. I have never felt sorry for myself, I consider myself a lucky person and have too much in my life to be grateful for. So I will fight this setback as best as I can, and hopefully contribute something of value that can help find a cure, if not for myself then others.

Parkinsons is a disease that can be cured. Michael J. Fox and his foundation have done an incredible job organizing researchers to focus on the medical science that makes a difference.

Since my own diagnosis, I have asked myself what I can do to help. Writing books is a time-consuming labor, plus I spend time visiting schools, plus I have a family?plus I need to work out or my muscles stiffen up. Oh yeah, every day I answer 100 e-mails from fans. It?s a labor of love, as an author, my most valued asset is YOU, my readers. Over the last 13 years, I have worked hard to earn your trust. All of you who have ever e-mailed me know I ALWAYS RESPOND PERSONALLY. Students know I am always honored to answer their Q & A assignments for school. Thousands of teachers in the Adopt-An-Author program know I am always there to speak with their students via phone, e-mails, or personal visits.

Times are tight for many of us, and so many organizations need money ? I know because many of you contact me asking for donations on their behalf. I never say no. Over the years, I have also sent boxes of signed books to our soldiers overseas in appreciation for their sacrifice. But I need to do something to support the Michael J. Fox foundation, not because I have Parkinsons, but because I am convinced they are doing valuable work that can help all of us.


I am asking each person reading this to please go to http://www.teamfox.org/siteapps/personalpage/ShowPage.aspx?c=nrLXJ0PFKuG...

and donate $10 dollars to the Michael J. Fox Foundation. Please, only ten dollars. Because ten dollars from ten thousand Steve Alten readers CAN make a serious difference in the fight against a disease that affects millions of Americans?including this humble author.

My deepest heartfelt thanks, Steve Alten

Steve Alten