DISCLAIMER: All views expressed are entirely my own
Physiotherapy is a major part of living with Duchenne MD from childhood to adulthood. With DMD, it’s not like you can go to the gym and just get stronger. It’s a balance act, so it’s important that you get the right kind of Physiotherapy in the right way. The needs of people with DMD do not decrease but increases over time.
Physiotherapy is concerned with enabling us to reach our maximum physical potential through: exercises to minimise the development of contractures, splinting to maintain range-of-movement, providing proper postural support to prevent severe scoliosis & respiratory physiotherapy.
Preventive physiotherapy is crucial at an early age not just from the medical aspect but also from the quality of life aspect. I encourage taking responsibility of your DMD care, building a relationship with your consultants. Yes you may have some tough decisions to make in the future progress of your condition but the medical professionals are giving valuable expertise. I’ve noticed that when DMD boys start showing signs of needing respiratory support through CPAP ventilation they are reluctant to use it, I hated having to use it but it improves energy levels and quality of life.
Leicester has quite poor physiotherapy support in adult services. When I was growing up I received regular physiotherapy & hydrotherapy at my special-needs school by specialist neuromuscular physiotherapists. So before I reached adult services the school Physiotherapist Sheila Hardy made sure I had a back operation to correct my scoliosis and an Achilles tendon release operation. With her expertise I can now reap the rewards of a straight back and correct posture.
However my experience with adult services has been ad hoc, the first session of my 6-week block I discovered the physiotherapy department did not have a hoist or a comfortable couch for me to lay on. I then had community physiotherapy visit my house but it was just to teach my Mum stretches to do regularly, with no follow-up appointments as the department were short staffed.
Since then I have actively searched for physiotherapy so I was referred to NMC Coventry, it was brilliant to access a trained physiotherapist and osteopath that I could discuss specific issues I have like hand contractures. These exercises are still part of my current morning physiotherapy exercise regime, with tweaks when necessary.
Positively, Leicester has an excellent respiratory physiotherapy department & consultants. They are proactive in their support by accessing cough assist machines to prevent unnecessary hospital admissions. At 18 I was an emergency admission to hospital 3 times due to severe pneumonia – without the wonderful help of Glenfield hospital Respiratory Physiotherapists and a cough assist machine I would not be alive today. Unfortunately, the senior Physiotherapist Jo has left so the junior Physiotherapists have taken over but the support hasn’t seemed to be effected.
Finally, physiotherapy is necessary from Day 1 in order to life with DMD in the best way possible.
ONWARDS and UPWARDS!
Uncanny Vivek 