This post is part of a mini-series that focuses on Physiotherapy for individuals with muscle-wasting condition, transitioning from children's to adults services at age 18. I recommend you read *Part I* to gain a better insight to this topic.
I left off in Part I briefly touching on the light at the end of the tunnel for many in the North of England and that is The Neuromuscular Centre!
The Neuromuscular Centre is a non-profit organisation based in Winsford, Cheshire that provides a centre of excellence in Physiotherapy for young people aging out of the system with all sorts of Neuromuscular conditions. Bridging the gap for thousands in the country left hanging, with zero way to continue vital therapy once they reached 18. Believe it or not, speaking with fellow disability blogger Carrie Aimes of 'Life On The Slow Lane,' some like her had physio taken away as young as 14 as they are seen as a lost cause given the mortality of many Muscular Dystrophies. A damming attitude from our healthcare system!
The Physiotherapy people like me receive at NMC is like no other, we are overseen by the same Physiotherapist at each session, creating consistency and trust in our journey to at least maintain the little function we have as adults. All the Physios here are specifically trained in methods that focus and benefit people with muscle-wasting conditions. Knowing that fine line with what is 'too little' or 'too much' for our damaged and deteriorating muscles is VITAL. Doing either can have devastating effects on the person's everyday condition. Each person has there own fine line and the Physios at NMC work tirelessly to find that unique balance in each patient they see.
What is the goal?
Physio in childhood with these conditions was all about pushing the individual to find their baseline. Finding different ways around achieving milestones. Sometimes this never happened but the approach with each individual I've discussed this with has always been 'aggressive' therapy. Which was both a good and a bad thing. Good in that some abilities could be gained using different methods, but bad because like I mentioned earlier, pushing someone with already damaged muscles too far can actually make those muscles degenerate faster...
With adults, the goal is to keep the individual at their baseline for as long as possible. Each of us are put through a rigorous physical assessment to determine where we are at in the diseases progression and a tailored physiotherapy plan is based around each of our capabilities. As I have a very rare form of MD, I can only speak upon what they determined was a good therapy plan for me. But in a general sense it's to maintain function and keep us as supple as possible for as long as our conditions allow.
What does Physio at NMC look like for me?
I have a few main issues that my Physio Ruth focuses on.
- Weight baring through my legs to help circulation, promote digestion and help strengthen my bones (as those who can't weight-bare often end up with brittle bones).
- Full range of motion stretches to ease pain and try to slow progression of contractures in my knees, hips, elbows and shoulders in particular.
- Maintaining the strength I've got in my arms
- Getting a handle on the Edema I developed in my legs by getting them moving!
I usually start with being hoisted onto the tilt table and Ruth and I have a good olè chin-wag while she does range of motion stretches on my entire body. On alternate sessions this is either followed up with weight-baring through my legs by being firmly strapped to the tilt-table and tolerating 10-20mins as upright as possible while having a cup of tea and chatting to other patients in the room. OR I head to the gym area on the motorised hand and foot peddles. The leg peddles do all the work for me as I have very little movement left in my legs but getting them moving helps with circulation, pain and the swelling and the arms have a bit of resistance to help me maintain the strength I do have in my arms. I love how the gym faces there fully accessible garden area so it's very relaxing and motivating while you're exercising!
The NMC also has access to a Hydrotherapy pool connected to the college next door with a poolside hoist and track hoist system. As access for patients is limited to their school calender, you can appreciate there's a particularly long waiting list for this form of Physio. Personally I've done swimming several times a week as a child but never actual "hydrotherapy" which is somewhat different. I'm hoping this is something I'll get to do with the help of the NMC at some point.
I actually travel 2hrs there and back as there's only 3 of these specialist Physiotherapy centres in Great Britain specifically for people with muscle-wasting conditions. It's totally worth it in my eyes because having access to physio gives me and every other person that goes to NMC a better quality of life, compared to if we were left ultimately to let the diseases run their natural course. The hope is that one day there will be enough funding to open more of these centres so more people have access and don't have to just do without and hope for the best.
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