I was struck down by sclerosis in 2006 — literally. I was playing tennis and ran to return a drop shot. I never made it, but I did drop myself and rupture my right shoulder. It was so severe that it took two operations to rectify.
The first few years of living under the shadow of possible MS were ameliorated by the intense shoulder pain. The second operation was successful, and just in time for my MS diagnosis in the summer of 2009.
It was incredibly complicated to get a diagnosis. I had to take over, find my own neurologist, and make everything happen.
I’ve often ruminated about writing something like “The Rough Guide for the Disabled.” Instead of handy tips for the traveler, it would offer a glimpse of what the future holds for someone who is disabled.
Sure, everything is on the internet these days. But you have to know what to ask.
I had no idea that help existed. That is, until I got my own MS specialist nurse.
In the U.K., MS specialist nurses offer support and clinical advice, as well as connecting people with needed services, as the MS Trust explains.
I was at the annual general meeting of my local MS Society, tucking into a fish-and-chip lunch. Being of a garrulous nature, I chatted with everyone at my table. One turned out to be the local MS nurse.
I tried to get on her schedule, which was not as simple as one would think. On my first attempt, I ended up seeing a neurologist at my local hospital. It was a waste of time for both of us, and a severe waste of National Health Service resources. Still, he pointed me in the right direction, and a few months later I had my own local MS nurse.
It turned out I was not alone. My nurse discovered hundreds of MS patients left to their own devices. With MS you’re likely to fall. These patients had fallen through the cracks.
Thanks to my local MS nurses (I’m now on my third), I now have a fully loaded hospital bed that moves up, down, and all around. I sleep with my feet above my heart to drain my lymphedema. Oxcarbazepine, a pain medication for trigeminal neuralgia, has transformed my life. And last week, I described using the Peristeen anal irrigation system (yes, I’m going there!), which comes in a close second.
We all need a friendly neighborhood MS nurse.
Note: Multiple Sclerosis News Today 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 provider 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 Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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