Over the course of three weeks, Fiona Ratkoff found herself becoming weaker. Then she was in a hospital, completely paralyzed. “I thought it was my last day.” Her doctors had no idea what was going on.

“You cannot imagine how helpful The Myositis Association has been for me,” Fiona said. Once steroids freed her limbs to move a little, she started researching possible causes for her illness from her hospital bed. She began to believe she had myositis, despite her doctor’s skepticism, and found TMA.

“I had been trying to make sense of research studies written for scientists, but TMA had years worth of videos by experts explaining everything for myositis patients. It was credible and reliable information. Finally, my doctors started taking me seriously.”

Still without a clear diagnosis, living in France with physicians unfamiliar with this rare disease, Fiona found a respected researcher through TMA who recommended a specific exercise regimen. She started doing the exercises, and then she was diagnosed with MDA5 dermatomyositis – thanks to a referral from a friend she met through TMA.

Will you support TMA in helping others like Fiona?

Fiona worked hard to build her strength very slowly over time. It took her a year before she could walk 20 minutes. A year later, she could walk for an hour. Five years after being paralyzed in the hospital, Fiona was hiking in the Alps. “Now I am walking, biking, swimming, doing yoga, and maintaining my resistance workouts to stay strong.” She works full time, spends time with her husband and two daughters, and travels.

Fiona said without TMA’s expert resources and community, she may have never regained her muscle strength. Will you help others with myositis find a path forward? Your support of TMA  makes it possible to provide reliable information, connections, and hope to patients experiencing this rare illness.

Thank you for your commitment and support!

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4 comments on “How I moved from paralysis to hiking the Alps”

  1. 1
    Julie Browne on June 6, 2023

    Any info on your exercise & how you found someone knowledgeable about what to do. I’ve had Polymyositis for almost 10 years & am stable but no doctor does more than give me drugs, some Pt but never specific to pm. How did you find a doctor?

    1. 2
      Linda Kobert on June 6, 2023

      Hello Julie! Yes, finding a doctor and a PT who know about myositis is a challenge. The best way is to ask others who they see. Being part of a support group can help with that. We have virtual and local support groups: https://www.myositis.org/patient-support/support-groups/
      You can search for a myositis doctor in your area here: https://www.myositis.org/patient-support/find-doctor/
      Finding a PT is a bit harder. Here are some suggestions: https://www.myositis.org/patient-support/find-physical-therapist/
      We also have lots of information about exercise on our website. Here are some resources to start with: https://www.myositis.org/about-myositis/treatment-disease-management/exercise-physical-therapy/

    2. 3
      Ann Bockius on July 19, 2023

      I’ve been diagnosed for two years. I too was paralyzed in the beginning and placed in a rehab center for 3 months. There I received physical therapy 2 × a day. Then home, pt 3 × a week.
      Now have a personal trainer 3× a week – weights, bands, walking, swimming. My diet has changed drastically- NO sugar or substitutes, everything fresh, no cans or frozen food. Difficult? Yes. But I’m still alive and active at 84. I will continue. Good luck to all of you.

  2. 4
    Lynne Beck on June 6, 2023

    I was diagnosed with amyopathic dermatomyositis in June 2021 (PMScl75 antibodies).
    I have changed my diet to be anti inflammatory and am currently following a WFPB gluten free diet, I have been able to come off methotrexate and am able to go out in the sun again.
    There is a lot of information online about leaky gut and dysbiosis causing autoimmune disease and how healing your gut is the way to go.
    I believe gluten is an important factor – children with dermatomyositis are often found to be coeliac as well. Giving up gluten improved my rashes and stopped my hands turning blue.

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