Nemaline Myopathy Support Group

Resources

Therapies & Personal Development

Respiratory & Physical therapy

Respiratory therapy
Threshold IMT and Threshold PEP are available. IMT for Inspiratory Muscle Training while Threshold PEP Trainer, (Positive Epiratory Pressure Device) assists physical therapy.

Download a research paper. These items are available for around USD$250.

Physical therapy
Hippotherapy! (Horseback riding, not hippos -lol) I have been riding for 5 years and my daughter has ridden for 6. We are also ranch volunteers, so I've seen a lot of people come and go. (For more about our program, go to www.halleckcreekranch.org) We have riders as young as 2 years, who wear a waist harness with handles for side-walkers to hold on to.
As soon as they get in the saddle you can see them begin to respond to therapy. The change is dramatic; I watched one non-ambulatory 3 year old child (with CP, I think) go from chair to walker within the course of a year, and now she is walking without aid. When you sit astride a horse, your body responds automaticaly to the movement. I use a wheeled walker on land, but on horseback I feel as if I'm walking freely again. My posture improves automatically because of the way I sit, and my core muscles are engaged even just by sitting. All I do anymore is walk around in a circle, and just from that I feel my core is strengthened, and my scoliosis improved.
The littlest, weakest riders begin with a volunteer sitting astride behind them, holding them up in a sense. We have found that the whole activity is beneficial, because it's a social situation for young children as well. Even those who are not able to physically engage in many other things, light up when they get on a horse. Volunteers are taught to engage them in conversation - even the most timid will eventually speak or at least make noise in response.
So yeah, that's my 10 cents! (And if there's not a program in the area, what about something that mimics riding? Bouncy ball sitting or a foam core roller, perhaps?)

Carol

Spanish links
Is this what you want? It is a description the NM.
This one speaks about the last discoveries.


Disclaimer
The contributions on this page are given in good faith by parents who have used the exercises for their child’s development. No responsibility is taken if these therapies do not help you or your child. We are all different. Please seek medical advice before using this information.

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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