Amy M.

I had my first big MS attack in 2001. At the time I was told I had "probable MS" and got my definite RRMS diagnosis six years later when I had another major MS attack. My biggest MS attack was in 2021 and that's the one that left me with dynamic disability and a whole collection of mobility aids! I live in South Carolina with my husband and our twin teenagers. We love hiking and spending time in nature as a family; we try to still find ways to do that in spite of MS challenges.

Since 2021, I've struggled with severe fatigue, left side weakness and foot drop, and significant fatigable weakness. I've done tons of PT and OT but I seemed to have trouble holding onto progress because I couldn't exercise often enough or consistently enough. Whatever I did (walking, standing, working, sitting up and talking, cooking, etc.) I just tended to wear out quickly and need a lot of rest breaks. Some days I could walk a mile and others I needed a wheelchair. I was dealing with so much unpredictability and wildly fluctuating symptoms; it was very challenging to manage!

I had come across mentions of The MSing Link in different MS Facebook groups. I signed up for the MS-Specific Walking Webinar, the MS Strength Challenge, and The Progress Method for MS (formerly known as The MSing Link Game Changers) ... and I was blown away!! I was learning SO MUCH that I'd never heard of even in all my MS specialist and MS-specific physical therapy appointments, or patient education programs I had done. So much started to click into place for me and I could finally see a path forward to making more progress. I think I first joined The MSing Link in May 2022.

I have gotten so much more consistency with my mobility! I can still have big fluctuations, but I spend much more of my time in a more predictable zone, and I mostly only need a wheelchair now for big outings or sicknesses/pseudoflares rather than around the house or office. I can handle heavy doors out in public a lot easier. I'm able to carry things more consistently without as many random drops and spills. I can squat down to get things out of low cupboards without losing my balance. I can stand longer and do more cooking, baking, and a little more cleaning. My biggest wins: I was able to walk two 5K's (with my trekking poles) my first two Thanksgivings after joining The MSing Link! I've also been able to do some 1-2 mile hikes and when I go to the beach, I always try to run for a minute (literally ;)) and I have been able to do that, too!

I've been there many times and I definitely empathize! Give yourself time and space to process your struggles and disappointments, while also recognizing your strengths and celebrating even the tiniest wins (even if it's "I did five reps of one exercise today!"). If you're not able to exercise as much as you'd like, remind yourself that something is better than nothing, and that rest days are very important, too. Also feel free to reach out for a MSing Link guide if you'd like to have some help getting through this tough stage.

The MSing Link is such a unique and valuable program! It is PACKED with resources, encouragement, and practical tips that far surpass anything else I've found in the MS patient education space. There's an incredible range of guest speaker calls, exercise classes, exercises for specific symptoms, Q&A calls, and Dr. Gretchen AI! ... The community is also really lovely and very helpful. You can always try The MSing Link for a month and see what you think but for me, it really has been the missing piece of my MS treatment puzzle.