Today was yet another specialist appointment. This one took a whopping 13 months to get.
For those of you who don’t know or are new to my page, for the past 4.5 years, I’ve been dealing with neurological damage following my willing participation in a clinical research trial for treatment-resistant depression on April 2, 2022. After being administered a dose of psilocybin (magic mushrooms), I was left convulsing, hallucinating and spasming for close to six hours while two doctors looked on.
Since then, I’ve been living a nightmare of daily bouts of tics, tremors, brain zaps, constant tingling in my hands and feet, numbness, an overwhelming aversion to noise and touch, and a very rare, incurable disorder called PGAD. I constantly feel shame and embarrassment (just add it to the never-ending list).
Flare-ups can be really severe, especially at night when I’m exhausted or during particularly stressful days. Today’s examination was no exception. It was during one such flare-up several years ago, following a suicide attempt, that I applied for MAID (medical assistance in dying, which I’ve spoken openly about in the past), hoping it would soon become legal in Canada for mental health disorders (which as of September, 2026 has been indefinitely blocked). I was at the end of my rope, both literally and figuratively, and found a loophole to apply with the onset of my neurological issues. I simply couldn’t imagine living the rest of my life this way, both mentally and physically.
After going through the entire process and being told my case was in a grey zone, I put it on hold. I kept it in the back of my mind while continuing, with the help of my psychiatrist, to explore every possible avenue to repair my broken nervous system. My psychiatrist was the head researcher on the clinical trial and has remained a continued source of support.
Every new specialist I’ve been referred to (and there have been plenty) has felt like another roadblock, with most perplexed about how they could help. None, though, has ever compared to the neurologist who told me, several months into this journey, that a circuit in my brain must have broken that day and hopefully would fix itself.
News flash: 4.5 years later, it hasn’t.
But with every roadblock, including MAID, I’ve kept going, researching and accepting whatever help I can from anyone willing to try.
Today was another one of those appointments, this time with a Functioning Movement Neurologist. She and her team spent well over two hours with me, patiently listening, examining and working on a new plan.
Whether or not anything comes of it, it always feels good to be heard, seen and validated, and to walk away feeling hopeful, if only for a moment in time.
#movementneurology #clinicaltrial #treatmentresistantdepression #mentalhealth #myjourney
