with Winkie Simpson
Since 1973, Ariel Walker has seen the Huntington Society of Canada grow from a handful of volunteers to an influential global leader in the race to end Huntington disease.
As one of our co-founders, we have asked Ariel to share her thoughts in every issue of the Huntington Society of Canada’s newsletter, Horizon. Since 2009 Ariel has written a column on the history of the organization.
In recent issues, Ariel has invited some friends to share memories of the Society’s early days. Her guest for the Fall 2014 edition of Horizon was Winkie Simpson, former Clinical Nurse Manager at the Runnymede Healthcare Centre.
Here are Winkie’s reflections on the Society’s early days.
Caring for Huntington’s patients for 17 years taught me a great deal. Mainly never lose sight of the individual, and often it is the little things that count.
I remember our first HD client. She was a middle aged client who was no longer able to communicate verbally. She was acting out and often hit us when we didn’t understand her requests. It turned out she just wanted the TV remote! Once that was solved, she was a happy camper.
Shortly after her admission, one of our nurses visited her family. She saw photos of her when she was young and learned about her earlier life. I can still see the staff sitting around the table listening to what she had discovered. Our eyes and hearts were opened. It just totally changed the way we looked at her and subsequent clients with HD.
Another example comes from a colleague who was training a new staff member. This trainee didn’t believe that one young lady in very late-stage Huntington’s knew what was going on around her. So my colleague paged one of the maintenance men. Now, the young lady just loved this fellow, and when she heard his name she perked right up and put on a big smile. The new staffer just couldn’t believe the difference in her.
We met Ralph Walker shortly after we admitted that first client. We learned a lot from him. His special talent was his ability to listen and to make things happen.
For example, our clients were having a lot of difficulty with swallowing and communicating. The next thing we knew, Ralph had convinced the hospital to hire Estelle Klasner, a Speech and Language Pathologist, with the Huntington Society of Canada covering half her salary costs. Estelle came on like gangbusters and started a whole revolution in what we did.
We created a multi-disciplinary HD interest group at Runnymede made up of anyone who wanted to join; doctors, nurses, patients, families, social workers, clinical therapists, physical therapists, etc. If someone had an idea, we discussed it, and would try it out if it had merit. Some of them worked really well, so we started sharing those. Ralph would have us running around the country sharing our techniques.
One of the most important changes we made was how we dealt with negative behaviour. We started looking at the antecedents to see what caused the behaviour and then tried to prevent the cause, rather than respond to the consequences. There was a direct positive result in behaviour when we identified the causes and eliminated them.
The biggest rewards from my time at Runnymede? Seeing the changes in attitudes and results over the years and getting to know a lot of the families and patients. And of course, working with Ralph Walker was a real bonus. Meeting him was the beginning of a wonderful journey.
Thank you Winkie for sharing your memories and your journey. HSC is collecting stories and historical notes from years gone by. If you have a story to share, email us at firstname.lastname@example.org or call 1-800-998-7398.