STROKE SURVIVOR STORIES
New Virtual Learning Classroom Module : Management of the Upper Extremity Following Stroke
WE WOULD LIKE TO THANK THE STROKE SURVIVORS FROM OUR REGION WHO HAVE KINDLY AGREED TO SHARE THEIR STROKE RECOVERY WITH US. THE FOLLOWING ARE SOME OF THEIR STORIES.
STROKE SURVIVOR STORIES
It was Saturday, my friend’s daughter was getting married. I was excited! On the way to the wedding my wife was terrified. She was yelling at me to pull over. I just kept driving, reassuring her that I was fine. After the speeches were done, she called my daughter to meet us because she insisted that “Paul is not driving!”
“I’m alright, leave me alone!” I locked myself in the bedroom. My family knew something was wrong with me. They called my sister to come since I was ignoring them. Finally we went to Brampton Civic and still I was insisting that I was fine. I sat fumingly waiting in the emergency room saying to myself that I should not have been there but was admitted anyway. Monday morning I pulled the IV out of my arm, packed my clothes and said goodbye to the nurse’s station and walked home. When I arrived on my street a funny thing happened. I didn’t know my house! Luckily, my daughter found me and by this time, my legs were very weak and I couldn’t speak.
BACK TO BRAMPTON CIVIC HOSPITAL!
At the hospital, I found the help to start my recovery.I remember Dr. V. – the most compassionate man that I have ever met. The therapists were very dedicated, focusing on my brain. Simple things I took for granted were difficult and led to frustration, anger, and confusion. They are emotions that are still evident in my life today. The speech therapist and her assistant played a huge role in my recovery. At first, I didn’t like her because she would always count how many mistakes I made. It frustrated me because in my mind I was speaking perfectly. This is Aphasia. The occupational therapist made sure that I could shower, cook, and clean up myself. She also tested my ability to walk around the hospital without getting lost. The physical therapists helped me walk and use the stairs. When I left the hospital the speech therapist suggested I join the Halton Aphasia Center (HAC) and the Peel Stroke Survivors (PSS).
THIS CHANGED MY LIFE!
Let’s begin with HAC. I was a member for 5 months. I would not talk publicly for fear and ridicule. I only talked at home or the stroke groups. I knew what I wanted to say in my head but the words came out differently. This is aphasia. I appreciated being made to talk regularly. It gave me confidence. After the 5th month, I had the opportunity and confidence to be interviewed at Rogers TV for a stroke survivor story. My talking has improved to the point that my main hurdle has been conquered. A month after I left HAC they called me asking if I would consider a volunteer position, I agreed without hesitation and am now honored to still be associated with them. Let’s conclude with PSS – great people with positive attitudes. When I joined, my feelings were at an all-time low. I saw many obstacles the members overcame without complaint. The leaders were very influential in my life. Naren was (too) cheery and had a happy-go-lucky attitude; anger- free and excited about his life. It’s now what I want for me. Jane has a heart of gold and is a positive influence for our whole family. She suggested the senior home and now Linda and I are regulars. She helped my daughter find things for her son to do. Our PSS group offers aphasia class once a month. This could not be achieved without the generosity and co-operation of speech therapists who donate their experience and time. Our PSS group also visits Brampton Civic Hospital and West Park facility approximately once a month, seeing new stroke survivors. We try to convey to them that life is not over but different. After a stroke you’re not the same person you were before but it’s about accepting and adapting to the new you. Every stroke has different obstacles, physical or mental, with different degrees of severity. We hope to help other survivors through our stories. It’s mutually beneficial as we really help each other. When I look into their eyes, I see the same fears and concerns I had in June of 2011. If I had a passion in this world, this is as close as it comes to being it – helping other survivors. Through PSS, my wife and I were invited to a March of Dimes convention.
IT CHANGED MY WAY OF THINKING!
The convention had many workshops, topics, and guest speakers. It was Forrest Willett who had a profound effect on me. He was the key speaker, telling his story to a packed room. He talked about his book, “Baseballs Don’t Bounce”, (a must read). I have to really thank Dr. Master for defining Forrest’s words so that I could understand. Forrest Willett advised:
- Live for today, forget yesterday.
- Do one good thing every day for yourself
- Do one good thing every day for family
- Do one good thing every day for strangers
All strokes, like snowflakes, are completely different. No two are the same. Starting over again sure wasn’t in my grand scheme of things at my age. My stroke didn’t only affect me. It put my family into a different position. The strength showed by them helped me too.
Sunday Feb. 16, 2003, two months after I ended my maternity leave, I had a massive stroke in the main right artery of my brain. I was 42 and the new mom of a 13 month old baby girl. At 3:30 on that afternoon, I remember experiencing a terrible migraine while shopping. I was also seeing lightning bolts which I dismissed and ignored. I attributed this visual disturbance to the terrible migraine that I felt while in the store. At 5:30 I remember waking up and thinking that the lights had gone out on half of my body. Fortuitously, my husband was home and heard me roll out of bed and loudly hit the floor. He noticed that my speech was slurred and called 911. An ambulance immediately took me to Trillium Health Centre. In emergency they discovered that I had had a stroke and administered TPA which did not break up the blood clot that caused the stroke. I spent a week in intensive care and was transferred to 4C neurology. After 6 weeks I was transferred to the rehab unit. I was completely written off as ever being able to walk again and was destined for a LTC Home. I physically still had a left side to my body, but neurologically, the knowledge of my left side was gone and I drew stick figures without a left arm or left leg. I didn’t have trunk control and couldn’t sit up. However, I could still speak but my voice was very flat and lacked intonation. My husband brought our baby to visit me and I remember crying with him as she looked very bewildered at her very upset parents. Then I was transferred to Bridgepoint Health, a rehab hospital in Toronto. I worked extremely hard to reacquire trunk control and learn to stand and left Bridgepoint Health walking under supervision with a quad cane. I was then transferred back to Trillium Health Centre, West Toronto site, for 3 months so that my husband and siblings could make my home wheelchair accessible. I visited my home on passes from both Bridgepoint and Trillium.
Throughout 2003, I spent about 9 months in 3 hospitals. I did not return to paid employment, which was initially a huge blow to me because I had worked as a member of tech support for 25 years at a major GTA university. I have benefits which covered the cost of private in-home physiotherapy in early 2004. Also, in early 2004, I attended the Trillium rehab day hospital receiving physiotherapy 5 days a week. By October 2004 I could walk independently. My daughter learned to walk at the same time as I reacquired independent ambulation. When I was discharged we had attendant care from CCAC and March of Dimes and now I have a great nanny at home.
In conclusion, my story is a convergence of bad genetics and poor life style choices, I was extremely overweight when I had my stroke and very, very stressed out about my employment. In some ways I am not any further behind than if I was working in paid employment. I would not have been around to watch my daughter learn to walk. Now I am a disabled stay-at-home mom and have a wonderful nine year old daughter and a husband of 25 years. I have participated in Stroke Breakers, a Mississauga based post-stroke recreation program. Mississauga also offers the Next Step to Active Living program for stroke survivors out of the South Common Community Centre and Huron Park Recreation Centre.
In the spring of 2010 I joined a local stroke support group called Peel Halton Young Stroke Survivors or PHYSS. Ironically, it was started by a young woman who was a student at the university at which I worked and had her stroke after she graduated and was working.
My name is Melanie Cooper. I am a visually impaired teacher who has experienced a devastating trauma. I was a healthy 21 year old university student when I suffered a massive stroke that left me completely paralyzed on the left side and legally blind. I had to interrupt my 4th year at York University to undergo extensive rehabilitation and training in order to resume a “normal life”. This included endless hours of physical and occupational therapy and training on how to live my life as a disabled individual. Through this struggle, I maintained a positive attitude and was determined to fulfill my dream to be a teacher. During my rehab I quickly realized that there were very few programs that met my needs allowing me to regain my independence and once again lead a fulfilling and independent lifestyle.
I was very fortunate to attend a program through the CNIB which helped me learn basic life skills (modified to meet my disability needs). It was this program that changed my life. Sadly, as years went by, this life-changing program and others were eliminated due to lack of funding.
Consequently, I along with many others, was deprived of the ongoing support and services which were so vital to my rehabilitation and ongoing progress. In 1997-1998 I attended teacher’s college at York University where I was the first legally blind teacher to graduate in Ontario. This was a great accomplishment. I had endured years of discrimination as a disabled individual, but never lost hope and faith that one day I would make a difference in my own students’ lives. I vowed to one day establish a life skills training program for adults with disabilities, and that is how Connect Learning Centre (CLC) came to be.
“A Dream, A Need, And The Passion To Make A Difference” – Melanie Cooper.
Our target clientele are adult’s (ages 18+) with a disability, who want to lead an independent lifestyle, increase their well being, and better integrate them into the community.
It is our goal that CLC would bridge the gap between existing agencies, by offering a personalized life skills training program specializing in the areas of:
· Money Skills/Banking
· Social Skills
· Connecting with other community agencies
My name is Myla Brugmans, I am a stroke survivor. At the age of 23 (1993), I suffered 3 TIAs (transient ischaemic attacks). At that time there was no stroke education like today. I had experienced blurred vision, severe headaches and numbness on one side. Anyone today would automatically know that those are 3 of the 4 signs of stroke. At that time I was not as fortunate. Although, I was rushed to the hospital after my third TIA, I was still not diagnosed as such. I was in hospital for 3 days when I suffered my massive stroke. This left me a left hemiplegic.
While in the hospital over duration of 5.5 months, I eventually re-learned how to roll over in bed, sit in a chair and walk short distances with a cane.
I left the hospital only to find that I was being laid off. After the second year, I was thankful to have been exposed to a magazine published by CPA that had a disabled skier on its cover. I was a sports enthusiast pre-stroke and was still unsure how or if I would still be able to partake in such activities. I made a call to the publisher and asked how I could get involved in disabled skiing. They directed me to a local Toronto group. ADDS, Adult Disabled Downhill Skiing was meeting in three days on that Sunday. I mentioned it to my husband and siblings. They strongly advised me that I was barely able to walk. How did I expect to go down a hill without killing myself?
Well, I went anyway and was off the baby hill by the afternoon. I have never let anyone tell me what I can and cannot do. I met some great people in this sport who taught me the motto… “There is nothing we can’t do; we may just have to do it differently”. In 2000, I was recruited to ski for the Ontario Alpine team.
As for my career, the layoff in 1994 and the fact that I was rejected for disability insurance was the BEST thing that had ever happen to me in terms of my career. I was working for a company as a desktop publisher at the time of my lay off. I hit the proverbial pavement, attending conferences and meeting with head hunters. This kept me employed and in demand for five years. I was eventually hunted for CSC in 1998. Starting as a level 1 support analyst, I moved to four different companies and four promotions. Until the recent recession hit, I lead a Domino team from home for my clients in five different continents.
In spite of having three children, Skye (DOB 1992), Taye (DOB 1992) and Kyle (DOB 2000) and very busy work schedule, I still make the time to continue my physical re-habilitation at a Premier Fitness 6-7 days a week. With the help of the trainers there and my compulsive nature, I am in the best shape of my life. I dropped 8 sizes in 8 months.
I guess I should include what I can’t do. Here is the list:
I cannot put my hair in a pony tail.
As of June 21st, 2011 at 12:30 am I managed to learn to tie my hair in a ponytail. This was one of my biggest worries as the day approached closer and closer that I was to live without my teenage children who clearly were getting sick of mom waking them up at 4:50 AM every morning to help me with my hair so I could go to the gym.
I recently sold my home as I, like many other couples, am divorcing my husband. I look forward to beginning a new chapter in my life. Today I am the COO of i2i Custom Apparel in Mississauga.
Who says life slows down after a stroke? NOT me!!!
Everything that I have experienced in life, good and bad has served as a learning experience to show me that I have the inner strength to live this 2nd chance to the fullest.
Each day a gift to watch unravel is the most beautiful thing. I am a grateful stroke survivor.