Is it advisable to do exercise when affected by Nemaline Myopathy? Which activities would you suggest and how intense should they be?

Exercise with Nemaline Myopathy: which activities patients recommend or avoid, and what the evidence says.

3 answers

Regular physiotherapy/hydrotherapy is recommended for people with this condition, as it is important to maintain muscle strength if possible. The physical activity should not be too intense however as this is difficult for those with muscle weakness.

Posted Feb 24, 2017 by Star 1270

Exercise is good but not to cause fatigue or break down muscles. Active life is good. Isometric exercise is best along with swimming/pool therapy!

Posted Aug 29, 2017 by Mary Jo Draisma 2100

Translated from portuguese Improve translation

physiotherapy of the muscle to not atrophy the muscles - pilates

Posted May 29, 2017 by Danielle 1150

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NEEDLE IN A HAYSTACK

Doctors had never seen a person with this disease before me. They said it was very rare. Eventually I found others online and we are a like family. The nemaline myopathy support group on Facebook is a great resource community.

659

8/29/17, 9:09 AM by Greybeard

OUR FOURTH DAUGHTER BORN STARTED TO FAIL AT ABOUT TWO WEAKS THAT WE NOTICED. FIRST WEIGHT LOSS THEN JUST PHYSICALLY WEAKER BY THE MINUTE. UNABLE TO SUCK SWALLOW AND BREATH. THROUGH TESTING AND DIAGNOSIS WE HAVE LEARNED SHE HAS A NEW MUTATION. MUSCLE BIOP

Same as above

644

8/29/17, 12:33 AM by Mary Jo Draisma

IT'S BEEN A LONG ROAD

I was born with the condition Nemaline Myopathy & have always had muscle weakness, but I wasn't diagnosed with it until I was 43. I suffer from Ehlers Danlos Syndrome and in my long trail of searching for help and answers for that condition I ended u...

555

8/29/17, 9:16 AM by Peter

NEMALINE MYOPATHY

ACTA1 ;mild to severe side; NIV/night, Gtube, spinal curvature >70, surgery never done/considered too risky by local surgs Complicated labor-ischemic hypoxia autistic, failure to thrive used to walk 2 to 5 years declining :(

553

8/29/17, 1:32 AM by Laura

OUR STORY

Our journey started in 2010 with our first born son and also first born nmer he passed away at 12 days old then our second born son in 2011 also born with nm he passed away at 12 weeks and in 2016 our third born son was also born with nm and its been...

484

8/30/17, 5:27 PM by Laura

Is it advisable to do exercise when affected by Nemaline Myopathy? Which activities would you suggest and how intense should they be?

Exercise with Nemaline Myopathy: which activities patients recommend or avoid, and what the evidence says.

Nemaline Myopathy sports

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