SMA and Recreation
The following paper was written for my PE class in high school. I e-mailed several families for information. If you are interested in more information on any part of my paper please, e-mail me! The little red numbers (1, 2, 3, etc.) mean that I have pictures of these activities. Unfortunately, I do not have permission to post these pictures publicly. If you would like to see a picture of the activity, please e-mail me with the number of the picture you would like to see, and I will contact the family for permission to share their child's picture.
Thanks for reading and enjoy!
Spinal Muscular Atrophy and Recreation
Spinal Muscular Atrophy, or SMA, is a neuromuscular disorder that affects all muscle groups, including breathing, eating, and all voluntary movement. Because movement is affected recreational activities can be difficult. Parents and caregivers of children with SMA have had to become inventive in order to allow their children the most involvement possible in recreation.
Children with SMA type II are able to participate in more physical activities than children with type I. Even so, recreational activities can be difficult for children with type II. A very popular activity with children with type II is swimming7. Many children use aqua therapy to help improve movement and combat contractures. Like most children, children with SMA type II like to do what their able bodied siblings do. Stacy Saville, mom to Morgan age 2, discovered that basketball was an enjoyable activity for Morgan but it was very tiring for her to continually lift little Morgan to the hoop. "Zeke [Morgan's twelve year old brother] remembered that he had a little net with suction cups on it (the kind you can stick on a window), and we put that on her stroller between her legs, and gave her the ball. She had a blast throwing the ball into the basket over and over again."8 Morgan is now able to play basketball with her brothers without her mother becoming tired. The Saville family has also adapted the game "Silly Golf" by Milton Bradley. The game was originally purchased for Morgan's older brother but he didn't enjoy it. "We were going to throw it out, but Clayton found it in the garage and started playing it. Of course, Morgan said, "My turn, my turn..." so I held her up and tried to putt, but that did not work very well. So I told Morgan "Let's just try throwing it into the hole spot." It is really cool, because there are these three little gophers that stand around the hole, and she likes to "whack" them down, and then throw the ball into the hole. Then the ball is shot back out of the hole, and she sits at this little table where the ball…always lands in a little holder." The Saville's have discovered that with a little bit of adaptation Morgan, can do anything that her brothers can. Another family, the Vander Wyk's, discovered that a "walking sling" has been very beneficial to their daughter, Holli. The sling allows her to glide through her room while experiencing the feeling of walking10. The Vander Wyk family also devised a similar system that is attached to a power wheelchair base. With this system Holli is able to take ballet class with her peers and "walk" with her friends11. This is a far more elaborate adaptation than "Silly Golf" but has been extremely beneficial to Holli. Whether the adaptation is simple or requires knowledge of electronics and welding, everything can be adapted to any child's skill level and strength.
Children with SMA type III are able to do the most physical activities. The problem with recreation for children with type III is that they tire easily. Swimming is a favorite for many children with type III. The Wilson family has discovered that swimming is an activity that can be enjoyed by the entire family. According to Mitch Wilson, father to Bryce age 4 and Alexis age 2 "Our biggest family activity recreation-wise is swimming. Both Bryce and Alexis started on survival swimming lessons from age 1 and are both quite capable swimmers. Soon after Bryce's official diagnosis with SMA, we joined a health club with an indoor pool and large outdoor lake with beach… My children have even inspired me to swim for exercise but my wife has always been a very good swimmer. Bryce can swim the length of the pool & back all on his own doing backstroke or his combination of freestyle/breaststroke occasionally and Alexis seems to be taking after her Mommy in the swimming category." Both Bryce and Alexis participate in all family activities. Bryce also participates in hippotherapy, horseback riding with a licensed therapist. "Hippotherapy is a form of therapy that literally means "treatment with the help of a horse." The primary goals are normalizing muscle tone, equilibrium reactions, head and trunk control, coordination and spatial orientation. The multidimensional swinging rhythm of the horse's walk is transferred to the patient's pelvis in a manner that duplicates the normal human gait. In hippotherapy the horse influences the rider rather than the rider controlling the horse. The movement of the horse is the treatment tool to achieve the goals of strength, balance and normalizing muscle tone." (Cerebral Palsy Resource Center) Hippotherapy is beneficial to children with type III to help maintain as much function as possible. T-ball is a recreational activity that is enjoyable for all children. T-ball, like any other activity, has to be adapted. But with help from peers or family it can be done. As with types I and II, children with type III can do anything with additional adaptations and support.