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.