Patient Perspective: Earl's Story
June 06, 2023
I suspect that all stroke stories are as different as the people who experience one. I was surprised recently when I saw a book available called Stroke for Dummies with helpful advice for those who have had strokes and those who care for them. I then found a website that offers a list of ten things not to say to a stroke survivor. The key to one of them lies in the title of the web site. (“What Not To Say To A Stroke Survivor”) The term to describe us is stroke survivor rather than stroke victim. I suppose that makes sense – survivor is more positive than victim – but what you call us doesn’t really make any difference. I hope we’re all more than the sum of our parts or our experiences.
When I was in hospital I started thinking about the process of medical care and physical therapy as a sort of timeline. The medical part with all of the doctors, nurses and PSWs was sort of like the past, dealing with the medical side of the stroke. The present was sorting out the various medical problems and issues and focussed on the day-to-day details. The therapists, both physio and occupational, concerned themselves with the future, the kind of progress I might make as I recovered. There are certain hobbies and interests that I have that I am still interested in pursuing. I started to think about how the exercises I was given would be of use to me in making those things happen in some way.
The physical therapy is what makes a difference in how I get along every day. I know everybody comes at the therapy with different attitudes but for myself it has been the key to everything. I occasionally tease the therapists and my wife that some of the exercises look suspiciously like household chores. I think my window washing skills will be second to none soon and now I’ve got an exercise using a broom and another one with a hammer. There are even aspects of the therapy that apply to washing or drying dishes. I haven’t yet had the exercises I need to watch a movie with a bowl of popcorn, but I live in hope.
As with everything else attitude is the most important thing. I play the bagpipes, you have to be naturally optimistic to take up such an instrument, and after the stroke I thought I was finished with that. With the encouragement of my therapists and wife I'm happy to report there is still a chance. I was amazed when the therapy team figured out the muscles I needed to activate and exercises that would make them work so that I might be able to play my pipes again. I’m lucky to have a wife who has been extremely supportive throughout this entire process and that has made all the difference. Apart from rearranging our house to make it possible for me a get around and do things, she helps me with the exercises and offers encouragement. My wife also looks after scheduling medical appointments and all the medical details. It didn’t take long for pharmacists, nurses and therapists to learn that when they called it was easier just to ask for my wife directly rather than trying to go through me.
Of course everyone has different degrees of support but I suspect that everyone can access some sort of social network. One piece of advice I would dare to offer is to figure out what that support network looks like for you. Once you have that network in place you really are half way there, so it’s really important to sort that out. It seems to me that the support networks exist – we just have to take action and join. One positive thing to come out of this whole stroke process has been meeting an entire group of people I would never have known otherwise, for that I’m truly glad I have.
Recovering from stoke has been a team effort and I’m thankful to all involved in my care. In the hospital I was lucky enough to meet the environmental services staff who could brighten a day just by coming in and doing their work with a cheerful smile. The Nutrition and Food Services team members also played a part with their friendly demeanour. The nurses, doctors and PSWs all work very hard and sometimes have to put up with bad tempers and short fuses with a cheerful smile and kind words. The therapists and my wife have taught me the difference between “can’t” and “don’t want to” and how to keep working toward my goals. I haven’t mastered my pipes yet, but when I do watch out.
The final sort of advice I might give anybody with a stroke is not to worry about what you did before your stroke and think about what you’re going to do today, tomorrow and the days after that.
The importance of stroke recovery services is to be able to meet the client in their environment to work on meaningful goals. These may include washing the windows, walks with a loved on the boardwalk or playing those bagpipes. Thank you Earl for sharing your story.