Farooque Syed connected with Parkinson Society British Columbia to share his story. The following is a letter he wrote, addressed to the Parkinson's community, where he candidly spoke about the challenges of life with PD, and how one can still realize their dreams despite adversity.
During my early 40s, I started to feel more tired and fatigued. I started to get weaker and shake during exercises, like the bench press, and was not able to do the weights I used to. As years went on, I very slowly started to get worse, but I didn't know why, and neither did the doctors. I just kept going, not thinking anything except that it was probably stress, as my doctors thought. They sent me to Vancouver General Hospital for a "special diagnosis," where a team of doctors put me through in-depth heart tests. I did a treadmill test, and it had multiple levels from slow and steady to faster and more inclined. During this test, my legs started shaking and got extremely fatigued. The nurse had to help me off the machine. The doctor told me he didn't know what was wrong, but that my heart was great.
Other doctors asked me if they could drill into my thigh to remove a piece of muscle for research purposes, because they still had no idea what was wrong. I was told it would hurt, but I would be contributing to medical science and could help someone else. They said they find these symptoms often in my East Indian South Asian community and don't know why. I was back to square one, thinking it would just go away and correct itself somehow. I got to the point where it started affecting my career in the film industry as set security. I wasn't able to walk as much anymore. I would shake and my voice got softer. I was having trouble sleeping, and people were constantly telling me to smile. I never understood this because I felt like I was smiling.
Doctors still did not know, and I had to keep taking time off work because I just started getting slower with movements, and very tired, as my job required walking and standing for 12 hours a day. Finally my new doctor sent me to a neurologist, who gave me some in-office tests, got me to walk for him a bit, and then asked me to sit down. He told me I have Parkinson's disease. Boom…I had no words and couldn't speak — I couldn't even swallow as I fought back tears.
I told him I thought I had MS. "That would have been the better one to have if you had to choose, but you have Parkinson's, Farooque," he said. The neurologist told me he knew right away from just looking at my face — I had classic Parkinson's 'stone face,' he said. He asked me if people told me to smile more. "Wow, he's right, I get that a lot," I thought.
That diagnosis was made just over four years ago and I am still fighting the tears as I write about hearing it for the first time. It's still very emotional. I was hurt, sad, depressed, very, very angry, and upset. How could a God I prayed to everyday do this to me?
The neurologist said I have probably had it for about five years prior. I had to quit my job and go on disability, so to go from being a teamster making a very good wage to disability and not being able to hold on to my career has been difficult. My life has changed so much. Aside from financial changes, I get so achy and fatigued, I shake at the most unwanted times, and will drool for no reason – so I try and be around Church's Fried Chicken as much as possible, where drooling and shaking with a bucket of chicken might actually look cool.
The greatest obstacle I have overcome is my book, Stolen Dreams. I started writing my book 17 years ago in prison, but due to some difficulties with life and health, I couldn't complete it. Finally, it’s being published this year. Talk about blood, sweat, and tears, because that is what it actually took from me. During my writing, I would get very anxious for no reason, which in turn made me shake. I would get restless, forget my thoughts, my body would hurt badly, and I would experience fatigue.
I knew I had to complete the book, not only for my parents and brother that has passed on, not just for me, but for anyone and everyone who suffers from a disease like Parkinson's, so they may find some comfort knowing that it took someone 17 years of suffering and struggling to complete their dream — and so can they.
I want to add that in the South Asian community, people don't know what Parkinson's really is. My family and community friends didn't know. They had never heard of it, or thought it's like fibromyalgia. It's like they don't see it as being anything that is serious — "just take your vitamins and eat healthy, and nothing will happen to you. Don't even think about it much, and try and forget what the neurologist said. You'll see, God will take it away. You look great, Farooque." This is what I hear, so there is obviously a need for some education and awareness.
For anyone reading this, if you are newly diagnosed or know someone who is, I would like to say it's heavy duty news to find out you have Parkinson's, but don't let it consume your thoughts and mind. Take a breath and talk to friends and family, because you will need to.
The good news is, it's slow, and there are sure-fire ways to slow the progression down, like a slug swimming in molasses. One word…exercise. My neurologist told me the science community doesn't know exactly why, but they do know that moving and exercise will slow Parkinson's progression.
My brain is thinking that exercising and moving every day is like a cop pulling over a guy speeding in a school zone, so walk, bike, do tai chi or yoga, but please try and move somehow every day. (Don't worry, my jokes aren't a result of Parkinson's. That is all natural and just me, so don't be thinking if you are newly diagnosed, you’ll become super funny like me. Sorry, that's not going to happen.)
I would like to add that if you are feeling down, depressed, or just have the blues, please seek out a good counsellor. Especially if you are South Asian or from a similar community, because sometimes you need to talk and be heard by a professional. Go get massages, and manicures and pedicures – not only if you're female, but male as well. Sometimes, we all need that extra self-care, so please look out for numero uno — and that is you.
I wish you all the best on your journeys, and thank you for taking time to hear about mine.
To learn more about Farooque and his book, please see his website www.stolendreams.ca.