Parkinson’s patients mission

By Raffique Shah
January 23, 2024

Raffique ShahEleven years ago, when I first reported that I was diagnosed by several doctors with Parkinson’s disease, I thought I knew then much about this neurodegenerative condition for which there was no cure. Back then, the only persons I knew who had PD were actor Michael J Fox, my boxing idol Muhammad Ali, and my political guru of sorts, CLR James.

The fact that PD was both degenerative and incurable was somewhat of a death blow to me. I was 65 years old, as fit as I’d ever been (I used to jog/walk/cycle at least five days a week). Ali, while he was stricken he was not active in the boxing ring for obvious reasons.

CLR, whom I had known best and having spent hours, days, weeks, tapping his brain for knowledge and wisdom, is the only one I had observed living with PD. I saw him shake, spend much time in bed. and when we walked and he was in an active mode, he was brisk. He was always lucid: history, philosophy, politics, flowed from him as if he were a data bank.

When I decided to let my readers share this experience, I was not sure if I was overstepping the boundaries that were limited for PD patients like myself. But I had a fighting spirit that had always been part of me, throughout my life. I privately said, and this repeatedly, “PD, you never met Raffique Shah. Shake hands with the devil. I’m gonna beat you, PD.” This was all very private, shared only among family and close friends who expected no less from me. I continued my workouts though I did not extend myself too much.

Most people who knew me well took these physical activities as par for the RAF course. What they learned as year went and year came, is that I was also voraciously devouring every bit of knowledge I could put in my brain, diseased though it was. I think I can safely pronounce now that in that period that lasted a little more than ten years, I think—and readers have to be the judge—that my English, my writings, and overall knowledge increased out of proportion to what I would have expected, what anyone might have expected from a PD patient. Thus far, I have battled the beast for 12 years, maybe more: about PD, you never assume you know everything. In my case, I’m sure I showed some early symptoms before 2012 when I was diagnosed.

On doctors’ advice, I tried many remedies, some patented, others homeopathic, and yet others very scientific courtesy my favourite doctor. There were times when I felt I’d had the magic bullet this time. Turned out to be a brief relief from the most troubling symptoms. Back then, I often felt very lonely even with my family fully supporting me, giving me the courage to keep on fighting. My daughter Leila became my caregiver. My wife Rosina was always here. My son Camilo was a phone call away. My extended family, brothers, cousins, sisters, friends were almost to a man, supportive. Still, it was a lonely battle most times because I and I alone had to fight the most brutal part of it, beating the symptoms that could be so overpowering, so painful, so seemingly supreme.

Recently, others, some of international standing, fell victim to the beast. I was so sorry when I heard that one of my favourite Trinidad artistes, songwriters, singers, David Rudder, had joined the PD club. David hooked me as a fan back in 1986 when he painted the Carnival capital with his music, Road March, Monarch, Young King, everything. In one leap that year he joined the Sparrow, Kitchener, Shorty elite club, establishing himself among the greats. Now here he was in 2023 having spun at least one hit song a year, telling us that he was diagnosed with PD. I hope his fans will hear more of him because he has that fighting spirit, the same one that prods me to keep on writing, week after week.

Then we have Celine Dion, who suffers another neurodegenerative disease, whose voice thrilled millions, even billions, the world over. Actor Bruce Willis now suffers from dementia, yet another ND. From my vantage point I see these victims face a future that will be painful, with chronic aches and even if they are strong, add depression, constipation, chronic fatigue and a host of other physical and mental disorders.

It’s tough.

It’s depressing.

But, you know what? I feel I have a mission, like these other PD patients do. To remind those afflicted by lifestyle diseases that they have choices. We don’t. They can eat right, exercise (something a man stricken with PD would love to do), make significant changes and reverse the situation they put themselves in.

Remember, they have choices, PD victims do not.