Sunday, January 26, 2020

Finding My Own Way


From the winter edition of StrokeConnection Newsletter:
Finding My Own Way

Advocating for my own care has been my toughest recovery battle.
I am 52 and suffered a cerebellar stroke at 48. The stroke arrived with a violent headache, vomiting and vertigo. I passed the F.A.S.T. test, so my family ruled stroke out. Hours later, I was in an ambulance and was admitted to my local hospital.
I vividly remember when the doctor told me I’d had a stroke, a left inferior cerebellar infarct. I didn’t understand a word of it. As he turned to leave, I asked: “Did I have a bleed or a clot? Where in my brain? What does this mean? How did it happen? Could it have been from stress?” I didn’t know what I didn’t know, but I needed answers.
I was sent home five nights later. I never saw a neurologist. There were no supports offered at discharge other than six weeks of home physiotherapy — no neuro rehab, no paperwork to read, nothing to explain what had happened to me or what to be mindful of. I was to follow up with my family physician.
A couple of weeks post-stroke, I visited my doctor with a list of questions. I still walked and talked like a robot; he said it would pass. I asked about seeing a neurologist, but he assured me that if a neurologist were needed the hospital would have referred me. I was sent on my way with assurances I’d recover. I believed him when he said that time would make me better.
Starting at three weeks post-stroke, I initiated my own return-to-work program. After six months, the cognitive fatigue was starting to lift, but other deficits became clear. Noise sensitivity was the biggest struggle. I wasn’t able to understand fast speech or differentiate background and foreground noise, so 11 months poststroke I visited an audiologist who suggested a central auditory processing exam. It identified several deficits that validated the noise problems I’d had since the stroke. Now I had tools to help myself.
The audiologist noted I had nystagmus (rapid eye movement). She was shocked I didn’t have a neurologist and recommended one. That’s when I realized I had to be my own advocate to get help.
That first neurologist told me his focus was only stroke prevention and encouraged me to seek a referral elsewhere. That led me to advocate for a referral to the Chief of Neurology at the hospital. Within a month, I had my first appointment where I’d been a patient 15 months prior. It led to more answers.
Since my stroke, I have sought many tools and supports for my recovery — from monthly massage therapy and regular physiotherapy for balance to occupational therapy for memory and executive function struggles. I sought tests for my hearing and speech and vision issues. I also got therapy for swallowing problems, proprioception (recognizing where one’s body is positioned in space) and balance and binocular vision retraining. And I had a neuro-psych assessment to tease out where my brain has difficulty.
In 2017, I joined several online support groups. They’ve been a great resource to fill in the gaps when I don’t know what I don’t know. I now have a place to ask questions and get responses from other survivors who’ve been where I am and to share information about what I’ve uncovered on my journey.
I hope to positively impact health outcomes for others. I’m grateful for supportive friends, family, coworkers and the online communities I am a member of. They all accept me where I am in my recovery and encourage me to seek new ways to improve.

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