Name dropping

Jon is in famous company with his Parkinson’s: Muhammad Ali, Pope John Paul II and, most vociferously, Michael J. Fox. (It is pretty poignant that Parkinson’s has all but taken Ali’s very distinctive voice from him, leaving him with an indistinct whisper.) Of course we read Fox’ first book, Lucky Man, where he talked about how he learned he had the disease, how he concealed it for years, how he finally ‘came out’, and how he wound down his acting career and started up his Foundation for funding research into a cure for Parkinson’s. Fox made his name being funny, so of course there was funny writing in there, but also parts that were very moving and that spoke directly to the stage we were at and the fears we were dealing with when we read the book.

Now Fox has just published a second volume of autobiography, Always Looking Up, which we bought as soon as it came out. Jon read it first and found it less engaging than the first book. I’ve just read it over the last few days, and I kind of agree. There is a fair bit of repetition from the first book, and a fair bit of the kind of name dropping and funny-story-telling that one would expect from any celebrity biography but that is of limited interest to us. However, when I decided to skip all pages with too many capital letters (i.e. too many famous names and the places they met), then what remained turned out to be a very decent book about coming to terms with the disease.

In the first book Fox had deep brain surgery on both hemispheres, so in this new book he is right out of treatment options. There are only the pills left, and at the advanced stage of the disease that he has reached, they work very much less than ideally. Basically, what you get after a number of years on L-dopa is what is termed ‘on-off’ periods, which mean periods when the medication is not working at all and periods when it is working well. These periods can alternate abruptly and quite unpredictably. As if that wasn’t enough to contend with, there are also periods when the medication is, in a sense, working far too well – when it doesn’t just stop the debilitating, cramped slowness, but instead accelerates the entire body into a riot of uncontrollable motions known as dyskinesias.

This is still many years away for Jon, indeed he may well never get to the stage Fox is at (normally, the later in life you get the disease, the slower it will develop). So in that sense, the book has less immediate significance for us. But as an example of coping, of counting your blessings instead of listing your troubles, of sheer chutzpah in the face of just about anything life throws at him, Michael J. Fox is amazing. What he does in the way of raising funds for research and keeping stem cell research a live issue in US politics is immensely valuable. His inspirational example, though, is entirely invaluable.