I am of the opinion that having regular physiotherapy is an important part of managing muscle-wasting conditions like Duchenne. I have had physiotherapy for a number of years and I think it has done me a lot of good. I am a firm believer in its usefulness for Duchenne patients to maintain the condition of limbs, joints, and muscles. I have had physio regularly between the ages of 11 and 24.
It was provided especially when I was under paediatric care throughout primary and secondary school, and took place every week or so. When I was younger, physiotherapy wasn’t necessarily my main concern and it did seem like a drag. In primary school for example, I remember occasionally trying to avoid having physio by hiding with my friends or pretending I had forgotten what day it was.
But, I came to realise how important it was to keep me feeling comfortable in my wheelchair and keeping me flexible enough to be able continue to do everyday activities such as putting on clothes easily. However, the amount of physio I have had has decreased over time, and now I moved completely into adult care services I no longer have any at all. It was explained to me that the support for regular maintenance physio no longer exists. You are still able to see a physiotherapist if you have specific problems, but for the most part you have to do it yourself. Although this is manageable, it would be great to see more professional support for adults with Duchenne.
This again seems to come down to funding and availability. In my experience, child services are well funded and prioritised (and are excellent) whereas adult services drop off almost completely. It is baffling that services fall so dramatically for adults considering that conditions like Duchenne progressively worsen and need more help as you get older.
I have read articles on a number of websites that discuss the importance and benefits of physiotherapy for muscular dystrophy patients to prevent contractures or reduce pain. A quick search also reveals a lack of physio services for neuromuscular conditions across Britain. Having more services for adults with muscle-wasting conditions makes a lot of sense to me. Physiotherapists are very important in this regard, and I think that greater support for and also access to these services is necessary.