Jason’s Story

My journey began when I was 25. I was working two jobs and was a volunteer firefighter. I enjoyed camping, golf and loved sports, having played many sports throughout my life with no issues.

In Fall 1999, soon after waking one morning, I felt a sensation of somebody tugging and pushing on my face. Gradually, the feeling moved to my arms and legs. Concerned, I had my future wife, Amber, take me to the ER, where the doctor told me it was stress and to go home and sleep it off. After I convinced him that it wasn't stress, he told me it was likely drug-induced but agreed to try to help by giving me an Ativan, which eventually stopped the posturing.

Concerned, I pushed for some tests and had the great fortune of seeing a young, intelligent neurologist, who diagnosed me with Paroxysmal Non-Kinesiogenic Dyskinesia (PNKD).

For 11 years, my PNKD remained consistent. My episodes were typically every 3-5 days, a headache within 24 hours before an episode, and I would always feel an aura leading up to the episode.

Then, in late 2011 to early 2012, there was a drastic reversal in my symptoms. My body began developing tremors. These were new to me as they weren’t the tight, twisting, painful postures I was used to. They were constant, tiring movements that lasted for hours until multiple doses of medication forced me to sleep.

Over the next few days, this continued as we couldn’t see a doctor as my diagnosing neuro had moved to another location, and I was unaware that I was without a neurologist. These failed attempts saw medical staff call me a drug addict, an alcoholic, and a liar. Even though I was previously diagnosed, they refused to even ask a neurologist to take a look at me.

After another couple of days, a sharp paramedic finally got me admitted. Five weeks later, I was released and prescribed a 14-pill-a-day regiment.

I have since fought hard to gain as much of my life back as I can. I no longer drive, or golf or play other sports, but as a stay-at-home dad, I have been blessed to watch my amazing daughters grow up.

The experiences I have gone through are all too common for Dystonia patients, which is why I focus hard to raise awareness. As patients, it is our responsibility to help ourselves and those traveling the road behind us.

Awareness leads to research. Research leads to better treatments, and faith willing, a cure.

I am learning to mourn the person I was, which has allowed me to accept and love the person that I am.

Read more about Jason in this interview with DMRF Canada in 2017.

Read about Jason's significant contributions to Dystonia Awareness Month in 2020 and 2021

Read Jason's 10 tips to build your support network

Click here to read other patient stories.

Click here to read more about Paroxysmal Dyskinesias (PD)

Last update: Aug 2022