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.

Sharon Gilroy-Dreher | Survivor

Waterloo Region, Ontario, Canada

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Stroke Rehabilitation

Making the Best Decisions at Discharge After Stroke

The type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. In this, the first part of a two-part series on stroke rehab, we offer guidance for the decision-making process required when it’s time to leave the hospital.

What to Expect from Outpatient Rehab

After stroke, about two-thirds of survivors receive some type of rehabilitation. Outpatient therapy may consist of Several types of therapy. Whether a patient is referred to inpatient or outpatient therapy depends on the level of medical care required.

What to Expect in Stroke Rehab

Following a stroke, about two-thirds of survivors receive some type rehabilitation. In this second of our two-part series, we want to alleviate some of the mystery, fear and anxiety around the inpatient rehab part of the stroke recovery journey.
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AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Caregiver Guide to Stroke

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Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try

Tips for Daily Living Library

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Stroke Family Warmline

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Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.
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Stroke & Parts of the Brain

When Stroke Affects the Occipital Lobe

Our occipital lobe, the smallest of the four lobes of the cerebral cortex, controls how we visually interpret our world.

When Stroke Affects the Cerebellum

The cerebellum contains 80 percent of our neurons. Its job seems to be to make things better. We talked with neuroscientist Jeremy Schmahmann about how stroke affects the “little brain.”

When Stroke Affects the Parietal Lobe

The parietal lobe helps us make sense of sensory information, like where our bodies and body parts are in space, our sense of touch, and the part of our vision that deals with the location of objects.

When Stroke Affects the Frontal Lobe

Of the four lobes that make up the cerebral cortex, the frontal lobe is the largest. It plays a huge role in many of the functions that make us human — memory, language, movement, judgment, abstract thinking.

When Stroke Affects the Temporal Lobe

The temporal lobe has several functions, mainly involved with memory, perception and language.

When Stroke Affects the Brain Stem

The brain stem serves as a bridge in the nervous system. It sits at the top of the spinal column in the center of the brain. When a stroke happens there, it can cause a few different deficits and, in the most severe cases, can lead to locked-in syndrome.

When Stroke Affects the Thalamus

The thalamus can be thought of as a "relay station," receiving signals from the brain’s outer regions (cerebral cortex), interpreting them, then sending them to other areas of the brain to complete their job.
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Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

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Everyday Survival

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Life At The Curb

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Helping Others Understand

Stroke affects people differently and many of the effects of stroke can be complicated. Helping friends and family understand how a stroke is affecting a survivor can help everyone involved.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!