What if there is no cure?

Earlier this year, I had the opportunity to participate in an on-line forum(dubbed "Google Hangout") where I posed a question to Michael J. Fox and he, in turn answered (see Hangin' Out with Michael J Fox, April 28 2013). While both the question and his answer were more complex (or perhaps convoluted), in essence, I was challenging our societal response to illness. In this case, specifically to Parkinson's and the Michael J. Fox Foundation but I do think it can be extrapolated to other disease areas.

When I was first diagnosed with PD some 13 years ago, I was thrilled to see the almost simultaneously-incorporated Fox Foundation burst onto the fundraising scene with a fervent and determined proclomation to find a cure for PD within 10 years. They forged an organizational structure that would fast-track research efforts that showed promise, they built a succcessful team of fundraisers and a solid core group of philanthropic supporters. Research was, and continues to be, carried out in a broad spectrum and at a prolific rate.

Good stuff. No question. Yet, what I do find disconcerting is the 'drift' away from the original goals and the raison d'etre of the Foundation - to find a cure. There is more talk now of early diagnosis in order to improve treatment of PD - on drug therapies to alleviate the symptoms of PD - on coping strategies for living with PD. Again, all worthwhile pursuits but no longer the consequential cure.

I don't want to sound Pollyanna. I don't believe it is an easy task. I recognize that the Foundation has accomplished a great deal. I have donated to the Foundation and even run fundraisers on their behalf. Yet, I worry that the initial goals and challenges that were set out have been lost or corrupted along the way. Does the draw of the pharmaceutical industry dollar pervert the purpose? Does the Foundation become an institutionalized entity in the PD research community rather than a vehicle set up to bring about it's own demise through uncovering that cure? And what if there is no cure? 

I don't pretend to have the answers but, if anyone out there is taking a survey, put me down as one who still "wants a cure".

I'm a man, yes I am

In honour of Father's Day, I've decided to ruminate on what it means to be man with PD. How does Parkinson's affect my "maleness"...my "manliness"...my "manhood"? 

Hmm...on second thought, maybe I won't.

R.I.P.

One of the things I miss most from my pre-Parkinson days is a good night's sleep. I'm not talking about that alcohol-fuelled sleep brought on by a night of youthful revelry nor the spent exhaustion that followed an overly busy day of play as a child. Nor am I referring to the sleep that came to a weary body after a taxing day at the office followed by a night out for dinner and a show. What I am referring to is a "normal" 7 hours of restful sleep.

While it's been 13 years since I was officially diagnosed with Parkinson's, PD came to me some time beforehand. Years of a twitching baby finger, disturbances in sleep patterns, soreness in my extremities, and a fading sense of smell. All calling cards of a sort. It's hard to pinpoint exactly how and when PD came to rob me of my sleep but there's no use losing any sleep over it! I'm in bed with PD now and that won't change.

Through the years, I have experienced relative highs and lows. During my lowest period,  I went several years getting an average of 3 hours sleep a night (3 hours in total - not 3 hours uninterrupted). I have tried numerous pharmacological and naturopathic resolutions with varying degrees of success. At present, I am the best I've been in years. I take a low dose of Zopiclone (a sleeping pill) which pretty much ensures I will get 4-5 hrs of sleep that is mostly uninterrupted. I say mostly because, while I can pretty much count on some kind of interruption during the night (if not for the very vivid dreams I have, it'll be the dog barking at something in the dark, someone using the bathroom or a car passing on the street). Yet these interruptions are relatively short and I tend to fall back to sleep within 10-15 minutes.

Yet, as satisfied as I may sound with the current state of affairs in zzz-land, I know that not all is well that ends well. I find myself easy to tire and less patient then I ought to be. I am sometimes more testy or on edge than is warranted. And most often, it is those closest to me - myself and my family - that bear the brunt. A resolution? Think I'll have to sleep on that...