Michael J. Fox on Oprah: Educating the World About Parkinson’s Disease

Image by cliff1066 via Flickr
Photo by author’s daughter. My neck is almost always twisted like this. 

When Michael J. Fox went public about  his battle with Parkinson’s, I recall thinking that my symptoms were quite similar – I hope that’s not what I have.

My doctor assured me for years that whatever my problem was, he was quite sure that it was not Parkinson’s. I was first diagnosed with rheumatoid arthritis, but after about three years of taking stronger and stronger drugs in increasingly higher doses with no relief of my symptoms, my doctors reasoned that I had been misdiagnosed. I started having tremors, but passed them off as a side effect of all of these powerful but useless drugs I had been taking.

The next diagnosis was fibromyalgia. I had all the symptoms – constant, overwhelming fatigue; constant pain that feels like someone is twisting and squeezing all of my muscles; and pain at 18 specific spots called “tender points” on the body. But when I took an informational class for people newly diagnosed with fibromyalgia, I felt like my symptoms seemed a little worse than those of the other women in the class. Not to belittle their pain – fibromyalgia is an extremely painful condition – but no one else in the class had the tremors and involuntary movement that I had.

For me, the diagnosis of PD took about six years. There currently is no medical test to definitively diagnose PD other than an autopsy. It is especially difficult to diagnose in younger people (under sixty years old is considered young adult onset.)

Michael J. Fox and I are part of a small group of PD patients diagnosed before age 40 (not that I have ever met him). In fact, I have never met anyone else in this club. I try to catch his TV appearances whenever possible because I love to watch him squirm. Not because I would wish this involuntarily and painful squirmy movement on my worst enemy, but because I feel encouraged by seeing someone else who is sharing this horrible experience with me.

Thanks to Fox’s celebrity status, the world is being educated about the symptoms of Parkinson’s disease in general, as well as the specific challenges of young adult onset PD. This generation are just getting their careers going and raising their children. We have medications and surgical interventions that give us hope of living a normal life span, but the thought of living like this for another forty or fifty years is not a pleasant prospect. To get an idea of what living with this condition is really like; see my article, “A Day in My Life“.

During his interview with Oprah, Fox described how some of the daily tasks of life are affected by the disease. He demonstrated how he gets his teeth brushed, a comical rendition of how a Parkinson’s tremor can turn an ordinary toothbrush into something that could rival the most powerful electric one.

I would just like to point out that Fox has life pretty easy in the personal hygiene department compared to a woman with the same symptoms. To apply mascara, I grasp the mascara wand firmly in my right hand, resting my right elbow on the faucet, held steady by my left hand (which is also trembling); then I position the mascara wand under the lashes of one eye, and apply the mascara by closing my eye. Then I repeat the whole process with my other eye. I doubt that Michael J. Fox has ever had to apply makeup, shave his legs, style his hair, or put on a bra.

I have been encouraged by Fox’s first book “Lucky Man”, in which he puts life with PD in perspective. He uses the analogy of a bag of hammers – everybody gets a bag of hammers to deal with in life, and his bag of hammers happens to be Parkinson’s. While I don’t quite get the analogy, I understand the sentiment. My analogy of choice is that we each get a pile of “manure” dumped in our backyards, and mine happens to be Parkinson’s. We each have choices to make: we could sit on the pile and complain about the smell; we could look around, constantly comparing our pile with those of everyone else; or we could spread the pile out on the garden and grow flowers.