Meet the panel for the Dystonia GTHA Patient Support Health Fair: 50 Years of Community. Hear directly from members of the dystonia community as they share their personal experiences and perspectives, followed by a Q&A.
- Jonathan- Panel Moderator
My name is Jonathan and I have Paroxysmal Kinesigenic Dyskinesia (PKD). I am co-leader of the GTHA Dystonia Support Group, and I am also co-leader of the Paroxysmal Dystonia and Dyskinesias Support Group. I am also a research psychologist, and I conduct mental health research at York University as a Banting Postdoctoral Fellow.
- Denise Rogow
THERE IS LIGHT AT THE END OF THE TUNNEL - My 50 year Journey with Dystonia -
As a young girl, I was very active in sports, public speaking, theatre and horse-back riding, winning trophies & ribbons for track & field, rodeo and oratories. I also had my own newspaper column for the teen page in my local hometown of Sault Ste. Marie, Ontario, at the age of 14. I studied French, German, Latin and theatre arts in high school and was also on the student council.
My Dystonia journey began back in 1977 when, as a very young radio newscaster in the Soo, my head and neck locked as I stood outside at the curb waiting for the light to change while on a lunch-break. After a couple of weeks when my head was actually being pulled to the right and with a lot of pain, I decided to seek out medical help. No one knew what I had as "nothing showed up on the x-rays" so I was always being referred to psychiatrists, psychologists and analysts. I had even spent a month in a psychiatric ward in London, Ontario where I was analyzed daily. Some words doctors used were "anxious" and "hysterical" and medications were plied. Family members and some friends refused to acknowledge my disability, citing the "hysterical" part of my diagnosis. I spent a week at the Mayo Clinic in Rochester, Minnesota where at least it was given a name - Spasmodic Torticollis! But, alas, I would be given an assortment of medications for the next 10 years.
By 1986, I was living in Toronto, working in the film industry as an actress and was a card-carrying member of ACTRA. Stress in my personal life due to divorce and a custody battle just aggravated the spasms. One day, I'm reading Ann Landers in the paper when a specific letter jumped off the page at me; a woman in the Toronto area was thanking Ann Landers for giving her an address and phone number for a Movement Disorder Clinic because her son had neurological problems and she was eternally grateful to the clinic. So, Ann Landers reprinted the address and phone number for the clinic! I BEGGED my family doctor to make a referral for me, which he did reluctantly, saying "I still think you need a psychiatrist". I was also on ODSP (Ontario Disability Support Program) but even my Social Worker said "there's nothing wrong with you...you can work"!
I met with Dr. Lang and his team in the clinic at Toronto Western Hospital and VOILA!!! A REAL DIAGNOSIS - Cervical Dystonia! Treatment began immediately with various medications, but after a time, they were not successful. Some were just too strong for me. So I was referred to Dr. Consky for BOTOX injections. At first, it was a Miracle Drug! Every 4 months or so, I would go back for another series of shots; sometimes 16 to 20 of them in 3 to 4 muscles. But, again, after 4 or 5 years, my body built up a resistance to them.
I gave up. I plodded on with my life, eking out a living with no treatment whatsoever. I accepted it; the constant pulling, the pain and having to manipulate my head with my hands...and always embarrassed by it. Some good days, some days worse than others. I learned to cope until......
2006. I was seeing another family doctor and asked that he refer me back to the Movement Disorder Clinic at Toronto Western Hospital. Dr. Lang tried Botox one more time, but to no avail. He then suggested a new surgery - DBS! It had been successful with Parkinson's patients and they were starting to use it for Dystonia. I was thrilled!
Two and a half years of physical and psychological tests to see if I could handle the wide-awake surgery then a hospital date was set. January, 2010 - Success! And, finally...Validation!!
I am now 73 years old and married again - as of November, 2010 - to my wonderful husband Stephen. Our wedding was an EVENT with a 30's theme. We danced and everyone had a fantastic time! I live HANDS-FREE now, thanks to DBS and my heroes at Toronto Western Hospital/Movement Disorder Clinic. I also lead a DMRF Support group for the Toronto area doing fundraising with my husband and creating awareness.
There IS light at the end of the tunnel.
- Casey Kidson
I am a dystonia thriver, advocate, athlete, and member of the DMRF Canada Board of Directors. I first became involved with DMRF Canada in 2017 as a Dystonia Ambassador and launched my campaign, Dyfying Dystonia, to raise awareness and funds for dystonia research.
As an avid cyclist, runner, and swimmer, I am an internationally classified PTS4 Paratriathlete and a member of Triathlon Canada’s National Development Team. I continue to “dyfy” dystonia through sport and advocacy, with my sights set on the Paralympic Games.
Outside of advocacy and athletics, I work full-time as an Appointment Coordinator at a local orthodontic office and serve as the Program Director for Sunshine Therapy Dogs in Kingston.
- Helen Dyks
I’m relatively new to my role as a volunteer Support Group Leader, but my journey with dystonia began six years ago. My symptoms started with uncontrollable blinking and, for nearly two years, were misattributed to allergies, tics, and even depression. It wasn’t until I met with a neurologist that I finally received the correct diagnosis: Meige Syndrome, blepharospasms and cervical dystonia.
In the early stages, I struggled to find answers and make sense of what was happening to me. Attending one of the National Virtual Support Meetings was a turning point — hearing others share their experiences gave me the understanding and perspective I had been searching for. Their stories helped me feel less alone in my own.
Connecting with people who truly understand dystonia has been incredibly meaningful. If I can help even one person feel supported or make their path a little easier than mine was in the beginning, then I want to continue doing this work. Supporting others helps me heal too.
- Stephen Rogow
My Life As A Caring Partner
Unlike the other members of the panel, I do not have Dystonia. So my story is that of a partner. Denise and I first met in the early 1980s, where we dated briefly but our life together started 20 years ago.I very quickly realized some of the ways Denise’s Dystonia affected her. I also realized very early on that it was important to be an active part in Denise’s journey. As you are all aware stress aggravates the Dystonia symptoms.
In terms of taking an active part in Denise’s journey I attended as many of the medical appointments as possible and listened to what the doctor said or recommended. I felt this was very important especially in the two years leading up to Denise’s DBS surgery.
I also attended a number of Toronto support group meetings with Denise. I have volunteered at the DMRF Bingo sessions. Along with Denise we have organized a DMRF one day flea market in 2016. Also for the last two years we have organized a yearly Value Village Fundrive. I have also been on the organizing committee for this health fair.