Nova Scotia – Life: Before and After Stroke.

Neurofatigue

How to describe neurofatigue. Unless you have a brain injury, it’s almost impossible to explain.

Neurofatigue is one of the biggest and long-lasting effects of a stroke. When I was in the hospital, no one said the word neurofatigue to me. My husband, Tommy, never heard it either. The nurses would explain that extended periods of rest are expected following a stroke but never that it would be long-lasting.

The day I was released from the hospital, we stopped at Walmart. We were only there for fifteen minutes, but the exhaustion that followed was indescribable. The fatigue that followed my stroke was debilitating, forcing me to nap after even the simplest tasks, like showering or vacuuming a single room.

Soon after my stroke, a person said to me that if I didn’t stop napping, I would become dependent on them. I knew from what the nurses told me that this was normal, so I started googling. This is where I learned about neurofatigue.

My speech therapist connected me with another young stroke survivor on Cape Breton Island, and she gave me the following links:

https://www.stroke.org.uk/sites/default/files/fatigue_after_stroke.pdf?fbclid=IwAR2e6IK9tpUSTcUPwzRMJeSTloc8MVx-9lk01uausczT1eu5_H1puv1PWQ4

https://www.brainline.org/article/recovering-mild-traumatic-brain-injury?fbclid=IwAR0afg6wrjKHKR5ckuxOLsHU_I2s1K15a4GEmF3S5G7I331cH4Mw8YVV7ao

I sent these to anyone who I felt needed to know.

Unfortunately, resting is part of recovery. Almost 2 years after my stroke, if I don’t have one nap per day, I can’t fall asleep that night. My brain is way too over-stimulated to rest, leading to a weird feeling of anxiety.

So far, neurofatigue has limited how far I can drive. After 45 minutes, I have to turn the wheel over to another driver, and my brain is depleted for the day. I can’t talk properly, lose words, find it hard to complete a sentence. This is frustrating. Living in a rural area, when my partner is working out of town, I must find individuals to drive us to appointments such as the dentist and orthodontist, which are more than an hour away. When my daughter plays sports out of town, I cannot take turns driving. I can no longer jump in the car and head to Sydney or Halifax for shopping, to pick someone up at the airport, or to visit friends and relatives.

Meeting in a group does NOT drain my brain. Meeting one on one does. A friend was visiting town recently, and we hung out by ourselves on two occasions. I thoroughly enjoyed our time together, but my neurofatigue hit me much sooner on those days. (Sorry friend…it’s not you…it’s me! 😉)

Recently, my teenage daughter has been wanting to talk in the evening. Wanting to talk to ME! Isn’t this every mother’s dream? At that time of day, I am mentally exhausted and can barely articulate a coherent thought. The other night I told her to come find me earlier in the day, so we can actually have a proper conversation.

When I decided to write this blog topic, I tried to find the perfect quote that illustrates neurofatigue. From the standpoint of a stroke survivor, I couldn’t find one that truly fit. I put this post on the Young Stroke Survivors Facebook group:

I am writing a blog post about neurofatigue. The explanations I find describing neurofatigue just don’t cut it. How would YOU describe it?

There were 40 responses. Here are some of them.

Tiffany Brunner: It is like hitting a literal wall. The closer you get to it, the more you notice all your effects from the stroke. You can’t focus, you can’t think. You start making mistakes. Forgetting words, stumbling thoughts. Once you finally hit that wall. It’s a kind of tired that your eyes start to water, and there’s nothing you can do except go to sleep. Feelings of shame and guilt…depression because you can’t do what you used to do.

Reesa Fletcher: My husband says it’s like watching a cell phone battery. The battery being me. I start out strong, alert and responsive. As the day progresses, the response is slower, thinking is slower, production grinds to a halt. Inside, I feel myself in a fog. My thinking and responding is delayed. Tired, the need to shut down and sleep. It’s like being drugged. It will hit me hardest when I problem solve my day, drive, concentrate for long periods. Simple tasks that I could do before are a major daily task.

Ashley Sandler: For me, it’s a constant longing to sleep, no matter how much I’ve already slept. It’s being a lifelong mathematician and not being able to calculate simple equations. It’s being a book lover and not be able to make it through one page remembering any of the words I’ve just read. It’s reminding myself that it’s okay to just breathe when everything else just takes too much energy. The person I AM =/= The person neurofatigue allows me to be.

Nicky Hopkins: There is no rhyme or reason to it and I can’t predict it. It just hits and it feels like whole body exhaustion – like flu without the cold. I know it’s coming when suddenly my words get muddled. The only thing that solves it is rest and sleep.

Ryan Malynn Becker: Exhaustion deep in your soul. To your core. Not sleepy, just can’t take another step tired. The battery being so drained it cannot recharge. I’ve said it before but us warriors need our own dictionary. Because tired doesn’t mean the same anymore!

I have been so fortunate with my support system. Everybody around me understands neurofatigue and my limits. My husband continues to be amazing.

Not every stroke survivor is so lucky! I see countless posts on the Stroke Facebook page of survivors who receive no compassion or understanding of neurofatigue or their recovery. Some stroke survivors are compared to other survivors by their support system.

“This person was fine after so much time…what’s wrong with you?”

“I know you had a stroke but you are home now, so get over it!”

Every stroke survivor has different deficits and different rates of recovery. Some recover fully. Most do not. Recovery takes so long. Families! Please be patient and supportive. Your stroke warriors will be grateful.

I wish I had been given a book when I left the hospital, explaining neurofatigue, auditory overload, common sensory problems at social functions, and other deficits to be aware of, along with practical suggestions or helpful tips. Maybe I will write one!

Shortlist

This summer, I submitted a poem to the Poetry in Motion program. Ten poems are selected and put on Metro Transit buses for a full year.

The WFNS website describes this year’s theme : The 2023 submission theme, “joy,” was open to broad interpretation—including happiness, delight, glee, festivity, or ecstasy; the objects, causes, or sources of joy; the joystick, the joyride, the killjoy, schadenfreude, or other complications of joy; and other meanings, qualities, and impacts of joy.

Today I received an email from one of the judges. He told that my poem had not been selected, but I was on their shortlist ! I have never entered a writing contest before, so this was a bit of a shock. I jumped up and down in the living room with my slippers on! I am thrilled to be shortlisted. (If I ever actually win a contest, I’ll probably do cartwheels on my lawn…which might be difficult with just one working arm 😉 .

Here is the poem.

Night Joy

Bright celestial blanket

A quilt

Mammoth

Wrapped around the world

Eternally

The firebugs morse code

to those in the sky.

Come From Away-A New Café!

There is a new business opening in Grand Etang, Café Les Suêtes, by come from aways.

Adonia O’Hara grew up in Rhode Island, but she was born in Sydney NS, while her American parents were visiting relatives. Chris O’Hara was born and raised in Ontario.

Adonia visited Cape Breton several times as a child. When she was 16, she moved to Bay St Lawrence with her aunt and uncle, and finished high school at Cabot High. She graduated in 2000, and moved to Toronto. “I had never been to Toronto and it was wild and beautiful- full of culture and opportunity,” she said. “Collectively, I spent about 15 years in Toronto, found a group of friends, a couple of great apartments I could afford on my own, and worked in every occupation you could think of!”

She started with telemarketing, she was a Merry Maid, she sold spa packages door to door, she worked at a fabric store and finally settled into an upscale women’s shoe store where she was employed for years. She came back to Nova Scotia, and did two years at Mount St Vincent University. “I ended up leaving MSVU and heading back to Cape Breton where I worked as the Wedding & Events Coordinator at Keltic Lodge Resort & Spa for 3 years.I flourished there, and enjoyed every minute of it. For personal reasons, I left there and went back to Toronto, and got into administrative work in real estate. I went on to work in retail sales while I got my realtor’s license,” she said.

“Chris and I met 10 years ago online in Toronto. He had always wanted to eventually move to the country and open some sort of eatery, as cooking was his passion,” Adonia explained. A few years into their relationship, Adonia took Chris to Cape Breton. He fell in love. “The boats, and seafood, the Highlands, the hiking, the ocean, the wild berries and foraging, small town vibes, no traffic, fresh air!” she said. After this trip, they started talking about moving to Cape Breton permanently.

Chris O’Hara spent 21 years in Toronto. He worked in the advertising industry in Media Planning. Chris explained, “Simply put, my job was to ensure our clients ads were seen by their target audience. Our recommendations known as Media Plans could include a variety of media types: TV, radio, magazine, newspaper, outdoor, online, depending on which mediums were most used by the relevant consumer. Advertising was a fun and engaging career that offered many opportunities I would have not been able to experience had I worked in another career. For example, I would think it may be hard to find an accounting firm that lets all the employees leave the office on a Wednesday afternoon to cheer on the Blue Jays at Rogers Stadium while drinking $10 complimentary beers.”

Over the years he was able to move into more senior roles, with his last position being Vice President, Paid Media at a company by the name of Edelman Worldwide. “With these more senior roles came a heavy level of stress, which ultimately just burned me out and I wanted a change. I was so lucky to have a spouse that was okay with me walking away from my career,” he said.

Chris has worked a number of different jobs since they moved to Cape Breton, but the ultimate goal was always to open a food establishment. Cooking has always been an interest for Chris. He worked in some restaurants during high school and college, binge-watched the Food Network and he even enrolled in some culinary courses at George Brown College in Toronto, just for fun!

They bought a house in Grand Etang and have settled into the community. Chris joined the Lemoine Volunteer Fire Department 3 years ago and is now Vice President and also takes care of their social media accounts.

When Chris was asked how he felt about living on Cape Breton Island, he said, “I heard a quote once and I believe it rings true: Live in a place where other people want to visit on vacation.”

They had never heard about the big south east winds common to the area. The strongest winds regularly reach hurricane force, from 100-240 kilometres an hour. It only affects a 30-kilometre stretch of land. Their house is in the centre of it. The Acadian locals call these winds, suêtes.

“We bought a large, 2-story house, with 130 years behind it,” Adonia said. “The entire house shakes, rattles, and rolls when a suête comes along! Several times now, I thought the roof was going to fly off but, we’ve only had our power stack come down once! Our picnic table blew from the back yard to our neighbour’s front yard one time. We didn’t even realize it until the next morning. Truth be told, I have always loved the wind! Sounds corny but, I feel like it was fate that we moved here. And obviously, we thought it fitting that the cafe be called Café Les Suêtes!”

The locals are excited about it!

Christina Murphy, who lives down the road, cannot wait for a café so open so close to home. “I often think of how much potential there is between the villages of St Joseph Du Moine, Grand Etang and further towards Terre Noire to the Belle Cote area. There is no reason to NOT have a cafe in the area. The population continues to grow with people from everywhere, and many, I am sure would love to have a place to go to relax without having to drive to Cheticamp or NE Margaree, I wish them the greatest success,” she said.

A resident of Grand Etang, Leandre LeBlanc said, “I think it’s a great idea; I am anxious to go for a walk and a coffee.”

Local business owners support the new establishment. Geoff Gillstrom, who owns the Cedar Peak Airbnb in Grand Etang said,” It’s exciting to see people trying new things and servicing our small community with fresh ideas. I’m most elated knowing that I can now grab a quick bite on my daily walk instead of having to drive to Cheticamp. I really hope they succeed!”

Waves End RV Campground is pleased that more businesses are opening in the area. “This is a sign that the local tourism ecosystem is recovering and thriving,” said owner Scott MacPherson.

Café Les Suêtes will be opening soon with a rotating menu including sandwiches, salads, soups, baked treats and espresso drinks.

Best of luck to these come from aways and their new café!

Published in The Inverness Oran, June 21,2023

A Patient With No Voice

On November 1st, 2021, I had a stroke. I was 50 years old and healthy. I ran regularly, did Pilates, took zero pills. My stroke was due to a carotid artery dissection.

My husband found me an hour later. The stroke stole my speech and the right side of my body was paralyzed. The ambulance took me to Inverness hospital to be given the clot buster medication.

The paramedics talked to me; the nurses talked to me, the CT Scan Technologists talked to me. My family showed up. They talked to me.

The nurse who gave me the clot buster medication told me, “This is a dangerous medication. People have died in this very room after taking it. Do you consent to it?” I could not talk, but I nodded. I knew this medication could save me.

Isn’t this what healthcare is supposed to do? Talk to patients? Tell them what is going on? What is about to happen? Try to communicate with a patient?

The clot buster medication did not completely work, so the medevac came. During my time in the helicopter, I thought of my family and tried not to think of my right side, which wasn’t working. I could not believe this was happening to me. When the helicopter landed after such a short time, I thought I was in Sydney. Nobody told me I was in Halifax. I was awake, in a wheelchair, but I could not make a sound.

They brought me to what I now know was the emergency department. They placed me in a room by myself which connected to a room full of nurses, divided by windows.

It was now close to suppertime. I had not gone to the bathroom for many hours… pre-stroke. I really had to urinate. Two people came into my room. I could not speak. With my good hand, I pointed at my stomach area more than once. How else was I going to communicate this? They both saw me, but neither person said a word to me. One person said to the other, “We are not going to be able to do what they wanted. We will have to take her now.” I am sure they thought I was losing it; I was just trying to communicate.

They pushed my wheelchair down a hall. I kept looking for bathroom signs so I could show them what I wanted. They pushed me into a room full of doctors and nurses. My heart sank. Please let me use the bathroom before they do anything else to me! I pointed to my stomach again… over and over. I was the center of attention, but again… nobody said a word.

The QE11 is the biggest hospital in Nova Scotia, but yet nobody talked to me. I was a patient with no voice.

Suddenly, someone behind me put something over my face. I woke up later in the ICU.

Interestingly, I received a letter from the QE11, asking me for a rating of my anesthesiologist. I did not respond. The care he or she gave me was perfect. I was not sick; the meds given were the right amounts; but couldn’t SOMEONE have told me I was about to have an operation?

When I woke up in the ICU (they had to wake me up every hour to make sure my brain was not swelling) I recognized my family members and realized I was in recovery of some sort. I did not realize I had to make signs to my family that I was mentally astute; I was heavily drugged, so that would have been almost impossible.

The head doctor of the ICU brought my family to a room less than 24 hours after my operation. He told them a significant part of my brain was dead. My sister asked: once rehab is possible, what were my chances at quality of life? My house was in the middle of renovations; should we make it wheelchair accessible? The doctor told them I may never go home, rehab might not be possible. I understand doctors have to tell it like it is. But less than 24 hours after my surgery to be told that chances are I would not recover? Shouldn’t another doctor be present, like a neurologist, to explain that until 48 hours after surgery, it is hard to know how I fared out if this doctor could not communicate this effectively? My sister left this meeting devastated; she told my family this terrible news.

When I was more awake, my family members and a nurse were next to me talking about who my family doctor was; they had the wrong doctor. Raising my hand, I shook my head. I made them go through each doctor until they reached the correct one and gave them a thumbs up. I had no idea this simple communication meant so much.

Later, my sister mentioned we were in Halifax. I still could not speak, but she saw the look of shock on my face. “How did I get to Halifax from Sydney?” I thought. A short time later, the nurse said something about the date and I understood it was late November. I thought I had been asleep for weeks. Somehow, I asked for a pen and paper. I wanted to know the date. The nurse told me I might not be able to write. She was right. My brain would not compute any part of writing a word. This was one of the strangest feelings I ever had.

I was at the largest hospital in Nova Scotia, but yet nobody knew how to communicate with a stroke patient. Here are some solutions to these communication problems.

1) IF SOMEONE CANNOT TALK, DO NOT TREAT THEM AS IF THEY ARE UNCONSCIOUS.

2) When I landed in the helicopter, why didn’t somebody tell me I was at the QE11 in Halifax?

3) When I was trying to communicate, why didn’t somebody try to understand what I was saying or at LEAST tell me I was going to be operated on by some very capable doctors?

4) Dayshift nurses in the ICU should ensure non-verbal patients are shown the location and date on the whiteboards every morning.

5) I found a poster for Visual Communication on Etsy for $25. Shouldn’t they automatically provide something like this to all patients who cannot speak?

Ten days later, I was walking with a cane. Four days after that, I walked out of the hospital. I can write now! My right arm and speech are still in recovery.

I sent my experience through the patient feedback email and received a letter from the Health Services Director Central Zone. She promised their team would work on improving their approach to communicating with stroke victims. She also promised to have me review this material in the coming weeks. This was a year ago.

Hopefully, their care delivery towards stroke victims has improved, to prevent some of the confusion I felt as a patient with no voice.

Published in The Inverness Oran, May 31,2023

For those fellow stroke survivors or family members, here are are a couple of good resources:

Category: Nova Scotia