Nemaline Myopathy Support Group

Resources

Starting out with NM

Physical Development (by Gary Spiegel)

Of course every child with NM has a different timetable for developmental progress so I will share with you our experiences with Miriam. Also you need to consult your P.T. for more details. Be sure to get the best paediatric P.T. that you can as they really can make a difference! Once Miriam was able to sit on her own, we would put her in a "tall kneeling" position. Basically we would start by placing two cushions on the floor in front of her (any flat but firm cushions will do about 6" high per cushion). Next we would place Miriam on her knees in front of the two pillows with her back straight and her hands resting on the cushions in front of her. Once she is able support herself in this matter for several minutes you may be able to progress to one pillow. She will develop trunk strength which is needed to support the body during standing and ultimately walking. Of course this exercise is boring and difficult at first, so we started with very short periods of time and increased the time as she gained strength. Miriam used to watch Barney videos while doing this exercise and this helped relieve the boredom, or we would put a puzzle or toy in front of her on top of the cushion. When the child gets tired, they will sit down on their butt, so you may need to start off by holding the child a little with one hand to steady him/her from behind. I am sure your P.T. knows about this exercise. We did not have a supine support for Miriam. Once she was able to support her body weight, we would have her stand against our bed (while watching a video). We would start off for a few seconds while supporting her and later increase the time so that she could stand for several minutes without help. She still could not balance on her own. When Miriam was 2 years old, we would have her stand against her crib while she would hold onto the bars. An amazing thing happened and she started to take a side step. Before we knew it, she would have the greatest time walking around her crib showing off. Eventually she would walk around our apartment hugging the walls. She did not actually free walk until she was 2 1/2 and then she was very unsteady. So expect a lot of falling, bruised and banged up knees and even foreheads. That was the unpleasant part of the walking process and no matter how much steadier Miriam is now compared to then, she can still be easily knocked over with a slight bump. But the child is so motivated once they discover mobility, that they will want to progress no matter what.

 

Download guide to Respiratory Care for Neuromuscular Disorders
An excellent paper in laymans terms, written by Muscular Dystrophy Canada.

Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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