Michael J. Fox’s Incredible Relationship with Parkinson’s Disease

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NEW YORK, NY - NOVEMBER 10: Joan Jett and Michael J. Fox perform on stage at A Funny Thing Happened On The Way To Cure Parkinson's benefitting The Michael J. Fox Foundation at the Hilton New York on November 10, 2018. (Photo by Jamie McCarthy/Getty Images)

About 10 million people worldwide have Parkinson’s Disease, one million being Americans. It is the second most common age-related neurodegenerative disorder after Alzheimer’s Disease. Dealing with such a condition is a great challenge because of the impairment of movement due to tremors, balance problems, and in some cases, a lost in the perception of time. Men are more likely to suffer from it, and the rate of diagnoses increase with the age of the person (it’s possible to come at a stop at 80). The disease causes deficiency in the substantia nigra (a region in the brain dedicated to the release of dopamine). The condition has gathered the attention of the media with the diagnosis of many icons, including Johnny Cash, Muhammad Ali, among others. However, no other celebrity has fought for the discovery of a cure like an actor Michael J. Fox.

Michael J. Fox and Parkinson’s Disease

Confronting the Diagnosis

Fox is an unprecedented figure in the movie and television industry. At one point in the 80s, he had the number one movie in America and a top-rated tv show. His Back to the Future films have spawned a following that has new generations enjoying the trilogy, and many still revering Fox in other roles. However, in 1991, the promising star encountered a tragic diagnosis, he was diagnosed with Parkinson’s Disease.

In a new interview with the New York Times Magazine, Fox explained such period:

“I was so scared. I was so unfamiliar with Parkinson’s. Someone is saying your life is going to be completely changed. Yeah? When? I’m fine now but back then I wasn’t in the “I’m fine now.” I was in the ‘I’m going to be bad.” That thinking didn’t allow me to trust that I could make a decision without worrying about time restrictions or financial pressures — which were inflated in my head. If I’d had any imperative to accomplish anything with movies, it shouldn’t have been to do as many quick successful ones as I could. It should’ve been to do as many good ones as I could. To do one good one. To find something that meant something to me. And it wasn’t until ’94 that I started getting it. That’s when I started to accept the disease — and acceptance doesn’t mean resignation. It means understanding and dealing straightforwardly.”

Over the years, Fox started to confront his destiny. He had Parkinson’s Disease, now what? Fox started what is known now as the Michael J. Fox Foundation in 2000, which searches for the cure for Parkinson’s Disease. The foundation has worked hard in the investment for research, acquiring $800 million over the course of 19 years.

Fox hoped to have a cure after in 10 years after the launch of the foundation, but the task has been more laborious. Fox explained the next steps for such treatment:

“I still believe in a cure. For so long Sinemet L-dopa was the gold standard. That was all we had, and it gave relief but it only lasted a certain amount of time and led to dyskinesias and other side-effects. So it was important to find better treatments. There’s a new drug that’s been approved that’s like a rescue inhaler for when you freeze. Because freezing is a very real thing for Parkinson’s patients. I could be sitting here with my foot on fire and a glass of water over there on the table and all I’d be able to do is think about how good it would feel to pour that water on my foot. Treatments for that can make a huge difference in people’s lives. Now, if we can prophylactically keep Parkinson’s symptoms from developing in a person, is that a cure? No. Would I take it? Yes.”

Bonding with Parkinson’s

Fox knows the debilitating effects of Parkinson’s, and at 57, he’s been fighting harder with it. Lately, his spinal cord has shown signs of deterioration if he is kept static, losing the feeling of his legs, and spurring problems in his movement. He even had surgery for the problem and fell in his kitchen while recuperating.

The road for Fox looks dimmer if you account for more loss of movement with the increase in age. The actor doesn’t shy away in promoting the effect of the disorder on his lifestyle. Moreover, he has developed an incredible relationship with it. On how Parkinson’s is part of his humanity and how he deals with, Fox told the following anecdote:

“You know, at Christmas we went to Africa. We stayed in this hotel that was a series of tents. To find my way to the latrine on the other side of the tent, furniture-surfing, when I couldn’t lean against a wall because it’s a tent — every trip to the bathroom was taking my life in my own hands. You fall down, and it’s not funny anymore; but until it’s not funny anymore, it is funny.”

As the Hollywood figure explained, it is a part of him. Parkinson’s doesn’t define him, but, is a part of his day-to-day basis. His current identity is incomplete without the condition.

A Parallel Tale on Disease and the Self

Such case reminds me of the tales of the late neurologist Oliver Sacks. Medicine’s poet laureate was no stranger to rare and unique neurological disorders. His ground-breaking book, Awakenings, was based off many of his patients that had an advanced Parkinsonian state, post-encephalitis lethargica. Many of his patients were in a “frozen” state and had awakened when receiving a dose of L-Dopa (the medication described by Michael J. Fox earlier). In many of his cases, that included color-blindness, Tourette’s syndrome, and autism, Sacks painted a broad picture in which his patients learned how to live with and absorb their disorders.

Such is the case of a surgeon in British Columbia, who was diagnosed with Tourette’s syndrome. Sacks, who was stunned to learn about such combination in a meeting of people with Tourette’s, went to live for a week with him. As he described in his 1995 book, An Anthropologist on Mars, Dr. Carl Bennett lived, loved, and operated as normally as possible after being diagnosed with Parkinson’s Disease. Like Fox, Bennett had acquired a relationship with his syndrome, making it a part of his humanity.

Sacks made such statements clear when he wrote about the difficulty of Touretters seeing their syndrome something external to them and not some internal part of their being:

“Compulsions and tics occupy an intermediate position, seemingly sometimes to be an expression of one’s personal will, sometimes coercion of it by another, alien will. These ambiguities are often expressed in the terms people use. Thus the separateness of ‘it’ and ‘I’ is sometimes expressed by jocular personifications of the Tourette’s…”

Is important to note that Sacks writes on that same page that Parkinsonians, in contrast, don’t feel their disease as part of their self.

Last Word on Michael J. Fox’s Relationship with Parkinson’s Disease

Fox defies such statement. He has been able to have a successful career in television while advocating for research on his condition. While being sensitive to others who have Parkinson’s, he’s been able to raise awareness and give a twist of humor to the daily challenges that it represents. Although he was alarmed and didn’t know what to do when he was diagnosed, he has been able to live a fruitful life and find a relationship with the progressing malady. Is because of this that while Parkinsonian, Fox exhibits traits of courage, willingness, and compassion.

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