05/31/2021
World MS (Multiple Sclerosis) Day is typically observed on May 30 each year. Established by the Multiple Sclerosis International Federation (MSIF) in 2009, World MS Day seeks to unite the global MS community of more than 2.3 million people “to share stories, raise awareness, and campaign with and for everyone affected” by the condition.
At CBI Health - Truro, we want to use this day to recognize one of our team members, Ms. Gwyn Bellefontaine (Registered Massage Therapist) who was diagnosed with MS 11 years ago. This is her message and her story on World MS Day:
"The month of May is Multiple Sclerosis Awareness and I have been inundated with information and group chats and donation pages. The research, the outreach groups, everyone wants to help in some way or another but in actual fact, it's up to you.
Everyone diagnosed with MS has a different story because of the way this disease works. Multiple means many and Sclerosis is a hardening or thickening of tissue and in the case of MS, a group of nerve fibres in the brain have lost the coating (myelin) to expose the nerves and may have caused nerve breakage and cell death. In the MRI, this shows up as clumps where the brain is affected, sometimes called “brain plaque”.
I was diagnosed with MS in November 2010 due to optic neuritis in which I went blind for about 3 weeks. The previous two months of severe pain of the eyeballs and sinuous pressure, sore neck, now doesn't seem quite as bad as the diagnosis itself. I was immediately in denial, there were no genetic links within my family, there was no reason for me to be going blind, there must be a mistake. I was a healthy, athletic forty-something farm girl. I was training for a marathon. Just give me the prescription and I'll be on my way.
Oh, to be so naive again. My prescription was a five day prednisone drip to reduce the swelling of my eyeballs to take the pressure off the optic nerves. My vision was slow to return but I had colour distortion in my left eye as a result. I was told that this was called an “episode” and that I have relapsing-remitting MS and it will probably happen again.
It took another year, another MRI, another neurologist with a second opinion before I started to accept that maybe, just maybe, I have multiple sclerosis.
I was weak from the pain and weight loss (when I walked, a lightning bolt of pain would zap from my heels to my eyeballs so I didn't walk anywhere and after a week or so of not getting off the couch, not realizing that another day had gone by that I hadn't gone to the kitchen to find food, I had lost 20lbs and was quite weak). I had been in the process of a career development plan through Employment Insurance to be a massage therapist, filling out the paperwork, checking what schools I could go to, would I have to move, and now I was being denied because of a few months of setback that I was pretty sure I would recover from. According to my EI spokesperson, she could not sponsor me because she didn't know if I would be strong enough to be a massage therapist. I even argued my point that a blind massage therapist would be better because you treat with your hands, not your eyes. But she was concerned about my strength not my vision.
I am not one to BE my disease. Being a farm girl at heart, I took a job at a local dairy farm and got stronger. I got back to training for a marathon with my community of runners. I ran the PEI marathon in the fall of 2011 and kept training to run the Ottawa marathon in the spring of 2012.
In the past 10+ years, I have changed careers from dairy farming to go back to school and start a new career at 50 as a massage therapist. I am not going be my disease, even though it is always on my mind. I have also kept in mind that although my eyes were affected, at any time, any other part of my body might be affected. I had heard of people waking up and not being able to move a leg or an arm. My thoughts were that if I did lose the mobility of a leg, is the rest of my body strong enough to get me out of bed? Am I strong enough to get off the floor if I fell? It has been up to me to be the strongest that I can be so that in the event of another episode, whatever that may be, I am able to deal with it.
As a massage therapist, I want to remain strong enough to give all of my clients the treatment they need. Besides being strong enough, I have learned so much more about this disease. I have even suggested to a few clients that they go talk to their doctor because my clinical impression was that they were exhibiting signs and symptoms of MS. In treating clients with MS, I am not their symptoms and treat according to the clients’ symptoms.
With many clients I have incorporated Craniosacral Therapy and Visceral Manipulation in my treatments. My latest course was called “Touching the Brain” which deals with nerves, myelin sheath development, and healing, touching on subjects such as Multiple Sclerosis, brain trauma and concussion.
This is my story. I don't exhibit symptoms of my diagnosis but I am aware of the phenomenon and the tangibility of this diagnosis."
For more information on how you can learn more, and support research and services surrounding MS, please visit www.mssociety.ca.
