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Thanks to our partners at LiftSeat for sharing this informative article. For most people, using a toilet isn’t something you think twice about. However, when living with a progressive neuromuscular disease like myositis, performing this basic function requires planning. Using a standard toilet when you have lower body weakness can be challenging and even dangerous,…
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Results of a patient-led research project Editor’s note: This is part three of a three-part series of articles from Dr. Kevin Austin, Adjunct Professor in the Health Futures Institute’s Personalized Medicine Centre at Murdoch University, Australia. He lives with IBM and turned his research skills toward a study to understand the priorities of those living…
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By Dorothy Vetrano In January, Shawna Nielsen posted about her “Top 10 Tips for the Newly Diagnosed.” One of her tips was to create a medical binder. I’ve done this, and I highly recommend it. It has become a lifesaving tool for me. Upon hearing the news of my dermatomyositis diagnosis back in 2020, I…
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By Mike Matthews At the end of 2021, Cambridge Dictionary announced their Word of the Year was “perseverance.” On top of all the profound collective challenges that everyone is currently experiencing, the myositis community has the added personal crucible of managing a chronic disease for which there is no cure. Despite the best efforts of…
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By Mike Bradbury Having lived with IBM for more than 20 years, I have a few suggestions for making the journey easier. [Editor’s note: Most of these tips are good advice for anyone, even if you don’t live with a chronic health condition.] 1. Do your chores. As best you can, continue your normal routine,…
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