In general as a physiotherapist my goal is to promote mobility, function, participation and quality of life in children with neuromuscular conditions. This sounds great on paper, but when a six year old boy is able to learn to ride a bike or has a chance to play soccer and kicks a ball to a playmate, then these goals begin to take on real value. My work with children with neuromuscular conditions is very rewarding and educational. I am amazed at their strength of spirit. They take a very practical approach to things. One boy recently explained to me, while I was checking the flexibility of his ankles, that his feet were turning in due to the disease but that it didn’t bother him. It didn’t change what he could do. He could drive his wheelchair with perfectly aligned feet or crooked feet, it really didn’t matter.
He taught me what is important and what is not.
My role as a PT is to learn as much as I can about how my client is functioning. How is he getting around at home, at school and outside? I look at the way he moves whether he is walking or using a wheelchair. I look for what might be helpful to make him move more easily. Maybe he needs to do some stretches to prevent his knees from becoming stiff or sore. I ask her what she likes to do. If she likes swimming I can help her find an accessible pool or link her up to a recreation therapist who can help find the right floatation device to make swimming a possibility. If she likes hockey, I can let her know that she can play power wheelchair hockey in her community and discuss seating modifications with her seating team.
I focus on their strength and their flexibility. I give suggestions on equipment that might help them such as a night splint to stretch their ankles or a lift system to help them get into their bathtub or bed. I am also interested in their breathing. How hard can they cough? I teach them how to have a stronger cough by teaching them breath stacking. Sometimes a machine called a Cough Assist is necessary to help them cough.
Of course I don’t do this alone. I have a team of clinicians and doctors that work with me. Our NM clinician team includes a nurse, a social worker, an occupational therapist and a physiotherapist. By working together we see the child and family as a whole and try to work together to find ways to be helpful. We also support each other as sometimes we are unsure and learn from each other. Sometimes we are sad and can support each other.
One of the most exciting and interesting things that I have been fortunate to participate in is research. Our site in London has been very active in clinical trials for more than five years. I personally have been involved in five trials as a clinical evaluator. This is an exciting role as I assess children every four to six months to see how they are doing. Many of them are doing very well and this brings hope to the boys, their families and other families who are not able to participate. I am amazed at the families and their commitment to these studies. They give a lot of time and energy pursuing a cure for their children. It is a very satisfying part of my job.
Cheryl Scholtes is a physiotherapist at the Thames Valley Children’s Centre, Neuromuscular Clinic, London, Ontario.