Benefits of physiotherapy include greater control over my NMOSD

How a list of criteria helped this columnist in her search for a therapist

Jennifer van Amerom avatar

by Jennifer van Amerom |

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One of my greatest frustrations of living with a rare disease is how it affects my ability to exercise. Before neuromyelitis optica spectrum disorder (NMOSD), I enjoyed being an athlete and a dancer. When I graduated from high school, I weighed 94 pounds, and I maintained my small stature until I got sick. As NMOSD took over, I gained weight, found it difficult to move, and felt foreign in my own body, both inside and out.

Enough was enough, and nothing is gained without hard work, so several months ago I decided to take back some control. I was determined to lose weight and feel as good as I could in my body again.

The first step was to secure a trainer. Our private insurance provides me access to a physiotherapist, but selecting the right one was key. So I had to narrow my criteria.

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My list of requirements

I needed a physiotherapist who understood rare diseases. The chances of finding one who had worked with an NMOSD patient were slim, so I settled on finding someone who had worked with multiple sclerosis (MS) patients. This was important because, like many with MS, I can suddenly go from feeling OK to being exhausted and experiencing significant pain. I needed a therapist who could adjust a training session on the fly and who understood the kind of nerve damage that neurological disorders like NMOSD and MS can cause.

My next requirement was someone who wouldn’t be scared to push me. Over the years, many practitioners I’ve worked with have erred on the side of caution, often because they weren’t familiar with NMOSD and didn’t want to trigger a major attack. As someone who’s always prided myself on feeling strong, I’d leave those appointments feeling frustrated that I wasn’t making significant improvements. Thus, I set out to find a therapist who would be OK with testing my physical limits in a trial-and-error manner, even if it meant some discomfort or pain the day after our session.

I used to work with a holistic sports medicine clinic that provided physiotherapy, chiropractic care, massage therapy, and Pilates. Unfortunately, long-term construction work outside of the building made it difficult to return post-pandemic. A holistic clinic wasn’t a requirement, but having all of my practitioners talk to one another and share my patient file would be a bonus and one less thing for me to manage.

Lastly, I needed to find a physiotherapist located close to my home. I’ve tried several in my neighborhood over the years, but our sessions didn’t provide me much benefit, so I stopped going. Toronto, where I live, is a big city, and it can take me 45 minutes by car to get downtown during peak traffic times. Because I knew I’d be visiting my new physiotherapist multiple times a week, location was added to my criteria.

Finding the right fit

One day, as I waited for my daughter after school, I looked across the street and saw signage for a sports medicine clinic. I did a quick search online from my phone and discovered that they had everything I needed. As a family, we scheduled a meeting with the clinic’s lead practitioner and expressed all of our challenges, with a focus on what I needed as an NMOSD patient. As it turns out, one of their therapists has worked with several MS patients for years.

It’s now been several months, and I always look forward to my time with Chris, my physiotherapist. One day I walked in, unsure if I was able to train, and he knew right away that I was in agony. Chris is trained in Fascia Stretch Therapy, a type of assisted stretching that targets tissues and joints, so he took me through a session, immediately relieving the pins and needles in my arms. He even gave me exercises to “wake up,” or activate, my nerves, telling my brain that it didn’t need to send those pain signals to my extremities.

Another time, I walked into the training gym and announced to Chris that I wanted to push my body and see what happened. He was all for it, recognizing that I was having a good body day. It felt good to sweat again, but most importantly, he didn’t treat me like I was sick. The next day I could feel muscles I hadn’t felt in a long time, along with a great sense of accomplishment.

As time has passed, I’ve lost a few pounds, but that isn’t the greatest reward. What feels the best is knowing that I still have some control over my body and this disease.


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.

Comments

Ruth Lambert avatar

Ruth Lambert

When I was diagnosed with NMO three and a half years ago, I was in the best shape of my life. I walked three miles a day, trained three days a week and felt great. NMO changed my life forever. I’m able to walk but not far and not very quickly. I’ve lost most of my muscle mass and don’t really know how to get it back. Training as I did is impossible. Most days I’m in pain and while I know I need to exercise I have no idea where to begin. Like you, I’ve been to a few physiotherapists, however none have the expertise I need. I also live in Toronto and would benefit from someone who understands this disease. If you’d be willing to share the name of the clinic you go to I’d appreciate it. Thanks for your help!

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