Nemaline Myopathy Support Group


Nemaline News

NM Newsletter #2

Volume 1, Issue 2, December 1, 1998

Drew Underwood

DrewThere are some similarities apparent in children with nemaline myopathy beginning at birth. Our Drew is now 9 years old. He was born on February 15, 1989. A c-section was scheduled due to breach presentation....apgar was 9 and we went home with a sweet little boy. There were some sucking difficulties, and low weight gain. At two weeks he was hospitalised overnight for answer yet as to why he was having difficulties. He was a floppy baby, very alert and was slightly delayed in gross motor skills. At five months, we began seeing a neurologist at Tulane Medical Center, and there were several tests given to Drew, but no diagnosis. Also, at that time we began O.T. with a great therapist. Drew walked at 15 months and was a very happy toddler. We moved to Mobile, Alabama when Drew was 18 months old. We travelled back to New Orleans for O.T. and for the muscle biopsy that gave us the diagnosis of nemaline myopathy, at that time Drew was 2 years old. There haven't been any surgeries as of yet.

Drew has been able to participate in several group sports and is in fourth grade. Accepting that he is different is not always easy for Drew. He is very thin and can't run or climb well. He is very happy with what he can do well and is aware of his limits. Often Drew will get worn out from walking and keeping up at school....that's when we take a break and rest!
Speech therapy began for Drew at two years old and he continued until he was in the first grade. Now we use the MDA neurologist once a year and the pediatric orthopedist every six months. My current research effort is through several neurologists in Australia and Canada, whose main study is NM. There are still so many unanswered questions. I will be happy to share with you any information or articles I have. Finally, when Drew was three and a half. We had our second child. Bret was born October 4, 1992 and does not have nemaline myopathy. He is a great friend...and sometimes foe to his big brother! Thank you for sharing with us.

Ann Underwood

"I Wish"

I wish: That I had grieved less when he was born and that I had seen the challenge rather than buy into the sense of failure.

I wish: That I had not always braced myself to be defensive every time we went out - always on edge to explain or justify his existence. Those who knew him understood. Those who didn't, wouldn't understand even with explanations.

I wish: I could say to all parents of a child with problems to sit down and consider what life would be like without that child - his/her laugh, the cute sense of humour that comes out at times, the special way they have of cheering you up when you're feeling sad.

I wish: I could take away your pain and show you how silly it is to always feel that slight touch of inferiority. Yours is the greater triumph when your child develops to his or her full potential.

I wish: I could take away the unkind words, the looks, the ridicule of the juvenile minds around you. But only you can do that by your brave lives.

I wish: I could say to each of you, "be happy".

Kathy Lefferson

Horseback Riding Aids Disabled Children

A disabled child and the movement of a horse make a perfect combination for personal success. Therapeutic horseback riding helps the disabled cild learn multi-tasks to achieve daily living skills. It offers relaxation, focus, academic learning, independence and belief in one's self. Horseback riding, used as a means of teaching vocabulary, spelling, reading and math, is an execellent tool to increase attention span and promote problem solving.
Therapeutic riding originated in Germany and is now catching on in the United States. The children who use this therapy are severely disabled, abused or neglected children. The results provide compelling evidence that therapeutic riding is one of the best therapies, not only for the body, but also for the mind and soul. Therapeutic riding is fun and safe. It's a strenuous sport rarely available to disabled individuals. However, this allows them to participate in a complex and therapeutic activity. It also teaches independence.
The instructors and therapists utilze the movements of the horse to aid in creating more normal movements in the children. These movements are a means of relaxing tight muscles while improving strength, coordination and motor skills. A horse's movements are exactly like a human. Some occupational therapists find horseback riding an ideal modality for therapy due to the fact it meets all the treatment criteria for sensory integrative disorders. Riding also activates the respitory system, aiding in stimulation of speech and normalizing muscle tone.
The children involved in such a program have fun and their progress is amazing. Lots of smiles on the kids faces and they love the feeling of freedom they experience while riding. Therapeutic horseback riding seems to be better than any medicine or tonic. There have been several children whose progress and success have not only surprised, but touched the hearts of all involved. Contact the North American Riding for the Handicap Association or you local 4-H club for information in your area.

Meridia Swallowing Center

Swallowing is a function we take for granted until it becomes difficult or painfull. Yet, swallowing actually is a complete process, involving about thirty facial muscles and eight nerves. An estimated fifteen million people in the US experience swallowing disorders. Difficulty swallowing (dysphagia) is not a disease in itself, but a symptom of other problems, including gastrointestinal problems, stroke, neurological disease and rarely some cancers. Even prescribed medication can contribute to a swallowing problem. If left untreated more serious medical problems can occur. Symptoms may include heartburn, choking, a "lump in the throat", cough and pain with swallowing.

How you swallow:
Swallowing can be described as having four stages. The first stage is the oral preporatory stage in which the food is chewed before swallowing. Then the tongue propels the food or liquid to the back of the mouth which starts the swallowing response. The pharyngeal stage, which is the most complex and critical, starts next as the food passes through the pharynx. In the final stage, food passes through the esophagus into the stomach.

The Meridia Swallowing Center combines a multidisciplinary approach and sophisticated diagnostic equipment to evaluate your swallowing or esophageal problems. At the Center, you have access to a diverse team of medical specialists - gastroenterologists, radiologists, otolaryngologists, neurologists and speech therapists. The entire Meridia hospital network is available to assist you in an integrated manner. Electrical-stimulation therapy is available.

For more information:
Request a physician referal to the Center; or call the Meridia Medline at (216) 449-4533, or call toll free at 1-800-621-0004.
MERIDIA HILLCREST HOSPITAL, 6780 Mayfield Road, Mayfield Heights, OH 44124.

Plant a tree for NMSG


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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