STories from persons with stroke

STORIES FROM PERSON WITH STROKE

WE WOULD LIKE TO THANK THE FOLLOWING PERSONS WITH STROKE FROM OUR REGION WHO HAVE KINDLY AGREED TO SHARE THEIR STROKE RECOVERY JOURNEY WITH US.

CHRISTINE'S STORY

Christine is a patient volunteer on the West GTA Stroke Network Steering Committee. She decided to join the committee to help improve the experience of persons after stroke. Christine has a 45 year background in healthcare and business. Prior to retiring, Christine was a Certified Critical RN, a Certified Clinical Research Associate and was a Computer Program Analyst. Throughout her life Christine has also held many volunteer positions including several volunteer Board of Director roles, volunteer work at Oakville Trafalgar Hospital, and as a nurse at the Health & Maternity clinic in Uganda. She has a partner, two adult children and 2 grandkids.

Here is Christine’s story…….

Before March 2014, I was a very active 66 year old woman and in early retirement. I enjoyed several active vacations. I belonged to a fitness club where I took spinning, yoga, and was a serious swimmer.  In one year, I went from being active to being unable to do any activity without symptoms - and took 19 pills a day.  

In April 2015, I had open-heart surgery for a disease called HOCM (Hypertrophic Obstructive Cardiomyopathy). After the surgery, the chest pains continued - I was unable to sleep well for a year.

My doctors think that the surgery probably resulted in my stroke! It was likely caused by a small clot which broke off from the inside of my heart and moved into my brain. In May 2017, I had a headache in the evening and I took a Tylenol and went to sleep. In the morning I was having my coffee and breakfast and was ready to read the newspaper. My partner phoned me early about 8am.  I’d thought I had said “Hi honey, I’m fine!”  These were not the words that came out of my mouth as my partner responded “I think you’ve had a stroke, call 911”. 

I couldn’t call because I couldn’t say anything. So I went upstairs washed, got dressed and went to my neighbour’s house across the road. As soon as I started talking to her, she called 911.

I was in shock, I couldn’t have had a stroke - I’m keeping up with fitness, but I couldn’t say any words.  I realized that my arms, legs and lips were normal. I realized that I could think but couldn’t get the words out. The paramedic asked me who I was but I couldn’t say a word, so I gave my cell to him, and showed him my app that has a heart on it. This was the “Health App” which I installed onto my phone and had all my medical information.

Over the next few days I slept a lot, but my brother and sister in law have a good friend who knew someone in the stroke care at Trillium Health Partners. I was connected with one of the Community Stroke Navigators at Trillium. The Community Stroke Navigator helped me so many times in the last 2 1/2 years. 

I was in the hospital for just 2 weeks.  I’d walk through the hospital halls figuring out every word I saw - surgery, stroke, etc. I was able to do my Sudoku puzzles, but reading was very slow. I slept a lot and I didn’t realized that I may be depressed. Over the next couple of months I kept crying when I was with family or just for anything.  My doctor prescribed Celexa medication which has helped me.

My partner was always here for me, he’d be able to understand me. From the beginning, I had speech language lessons in the hospital every day. When I got home, I had a speech language pathologist (SLP) about three times a week. I also had a SLP at the hospital once a week.

Uber was getting costly, so I tried getting the bus. Navigating my trips online was very difficult, but I then went to the bus station.  I talked with one of the bus drivers who helped me learn how to navigate the bus route. The bus driver also assisted me in taking my bike on and off the rack and how to transfer between different routes. I was happy when I got my driver’s license back!

I usually get lost, even with directions. But, I would find my way because I talk to people. After a year I thought I would be fine; but, after my second year I still had issues with my speech. It was still frustrating with no way to be in a conversation with friends. I tried everything I could to talk every day. My Aphasia lessons were 2 1/2 hours a week after my second year. I always tried reading, playing bridge, swimming (I’d change my stroke each lap, just to keep my brain active) or spending time with a few friends to have coffee. 

But in 2019, breast cancer caused some new problems. I had surgery and radiation. For a while I’ve become very tired and frustrated. So, after I finished my cancer treatment, I found a new program at an organization called Monarch House. This program was The Intensive Aphasia Program and it was the only program in Canada of this kind. The program lasted for 12 weeks with three days of therapy a week (4 1/2 hours per day). It was a lot of work, but I’d have a nap in the afternoon, and have a walk. It was a wonderful program and very worthwhile. My ability to read in sentences and my vocabulary was much better. Monarch House found an audio/text application for my cell phone (with Rogers).  I had a lot of difficulty hearing doctor’s appointments, meeting times, and phone #s from voice messages. The application takes voice messages in my cell, & puts it into text! This application helped me a lot.

Even with all the work I’ve done over the 2 1/2 years, the story that you are reading took me about 20+ hours to write and several more hours of practice. But I did it!

Christine

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