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Summary of GNE Myopathy International Fifth Webinar on Exercises, Neuromuscular Disease Foundation Newsletter, and GNEM-DMP Newsletter

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GNE Myopathy International (GMI) presented its fifth webinar series on October 14, 2017 entitled Living with GNE Myopathy - Fitness and Exercises. This webinar was presented by Mr. J. Shrader, PT, CPed., and Mr. V. Shieh, BA, a second year medical student, both from the National Institutes of Health (NIH), Bethesda, Maryland.

GMI started these webinar series with the deliberate intention of presenting pertinent and practical information to our GNEM patient community. GMI, along with the WorldWithout GNE Myopathy (WWGM) developed a survey in 2016 that was sent out via email to GNEM patients.

This survey addressed many of the life issues that GNEM patients encounter daily. This survey was intended to collate patient-driven information on therapies and treatments that patients are using or may potentially use.  In this survey most of the patients reported that they found that physiotherapy, supervised exercises, and aqua-therapy were very beneficial to them. This webinar was therefore planned to address GNEM patients' interest and willingness to know more about "Fitness and Exercises."

Imad Kazim, a member of both the GMI team and also a Certified Patient Advocate for the Neuromuscular Disease Foundation (NDF) has known Mr. J. Shrader, PT. CPed., from the NIH for the 7 years. Mr. Kazim introduced Mr. Shrader and Mr.  Shieh to the webinar attendees. He then acknowledged that Mr. Shrader has helped him immensely on how to deal with his ever-changing physical condition.  Mr. Shrader works with the GNEM research team at the NIH.  He is also involved with testing and/or monitoring the strength of GNEM patients. He has been following GNEM patients for more than 8 years. 

This webinar was attended by more than 50 patients from all over of the world (11 plus countries).  Mr. Shrader and Mr. Shieh gave live demonstrations and answered many questions from patients. Both of them cautioned all patients to consult their doctors before starting an exercise regimen.  Here is a narrative of some of the points they covered in their presentations.

1. Why Should We Exercise - We should exercise to improve physical fitness, flexibility, balance, and strength.

2. Muscles and GNE Myopathy - GNEM targets our skeletal muscles including knee flexors and hip adductors.  When we exercise we should try to exercise our quadriceps, gluteus maximus and medius, core, and calf muscles.

3. Exercise Precautions - Avoid overload and overuse of your muscles as these may lead to micro- tears and trauma to the muscle, which in turn will cause irreversible damage to the muscle.  Focus on quality rather than the quantity when exercising.

4. Exercise Considerations - Practical, functional, and assisted exercises with attention to safety.  Aerobic, strengthening, and functional exercises should be included in your plan. Work on the core muscles, and when working out, think about activating groups of muscles rather than an individual muscle. Do not focus only on the weak muscles but on all the muscles.  Focus on maintaining control  over your movements when exercising.  Have professional supervision or an exercise partner when working out.  Maintain proper posture, form, and technique, and allow adequate time for recovery.

5. Monitoring Exercise - Use different tools such as an Apple I watch, a Fit Bit, or the Borg RPE Scale to monitor for intensity and exertion.

6. Finding your Training Zone - Exercise should mirror the way we function in our daily routines.  We should attempt to exercise 2 to 3 times per week.  Training zones are unique for each person as it is relative to the level of physical strength or weakness to each person.  Use 10 repetitions for strength and functional training.

7.  Practical Exercise Modules - These modules consist of very helpful video demonstrations that Mr. Shrader and Mr. Shieh presented.  For more information, please consult the recording.  

8. Question and Answer Session - Questions were asked via a "chat-box",  (anonymously) or directly by individual patients.  Questions ranged from how to use a TENS device and if it is beneficial for GNEM patients; massages, anabolic steroids, types of exercises, what would be the best ankle foot orthoses, and types diet.  Mr. Shrader and Mr. Shieh gave "live streaming" demonstrations to answer some of the questions, to make the appropriate techniques more clearly understood and effectively applied.

This webinar was very practical and useful for patients because we learned applicable strategies that would further assist us to maintain independence for as long as possible, to maintain a high quality of life, we need to find a way to move our limbs no matter how daunting the task.  With the proper supervision and support when exercising we may manage to maintain and or slow down our physical decline. 

To watch this presentation, see the exercise modules, listen to the illuminating question-and-answer session.  Please visit:  

GMI would like to thank Mr. Shrader and Mr. Shieh from the NIH.  Finally, we would like to express our appreciation, as well to our GNEM community for attending this outstanding webinar.

I am very fortunate to have been working out with an exercise coach for years, and my coach and I have started implementing some of the exercise strategies presented in this webinar.

Links for GNEM Related Newsletters:

1.  NDF Fall Newsletter
2.  October, 2017 GNEM-DMP Newsletter

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