Physio After 18 | Incurable muscle-wasting conditions ¦ Part I

Here in the UK on the NHS, physiotherapy for untreatable, progressive muscle-wasting conditions stop once you reach age 18. The way it was told to my parents was that the NHS could no longer justify the cost of weekly/bi-weekly therapy that would never better the young persons ultimately incurable condition, despite if the individual or their family felt it has benefits (and in some cases prevents other issues related to being non-ambulatory). Before I proceed I’m going to list some benefits of physio for people with muscle-wasting conditions so you can gauge the seriousness of stopping such therapy.

1. It helps preserve range of motion in the joints.
2. Stretching delays the onset of joint contractures (where joints become increasingly fixed in a flexed position) caused by muscle wasting and can even stop them from progressing in some individuals.
3. Improve circulation.
4. Manage weight gain as the more immobile you become due to the muscle-wasting condition, the more easily you gain weight as exercise becomes more difficult.
5. Prevent and manage Oedema in the legs caused by being immobile as the disease naturally progresses.

Many people born with Muscular Dystrophy and similar conditions are diagnosed anywhere from 6 months to adulthood. The younger your diagnosed, the sooner you start physiotherapy, often multiple times a week to help improve or at the least maintain physical abilities. Imagine being reliant on this 2-3 times a week since toddler hood, only for you to reach 18 and be told basically as you’ve received this therapy throughout childhood and it hasn’t magically cured you, you are no longer entitled?

This is exactly what happened to me. In the image below is me taking my first aided steps in Physiotherapy aged 3, then unaided aged 4. My MD meant I had delayed motor milestones but I eventually gained the ability to walk thanks to aggressive Physiotherapy multiple times a week. Despite I lost the ability to walk just 2 years later, I still received Physio multiple times a week to help my balance, endurance, they’d teach me techniques so I wouldn’t get as hurt when I fell frequently from muscle weakness, they provided equipment at home and school to make life easier, they stretched my entire body in specialist methods to try and prevent me (being then non-ambulatory aka unable to walk) from developing severe joint contractures, they kept me standing with a frame to practice weight baring until I lost that ability too as your bones become brittle if you don’t weight-bare and so on. I could go on all day on what Physio did for me despite my condition still progressed, Physio was there to help me adapt and keep me flexible. I also swam twice a week in place of regular P.E as it was the only exercise I could do.

Here’s what happened to me when my Physio was axed on my 18th Birthday.

– I developed moderate contractures in my shoulders and elbows meaning I can no-longer straighten my arms fully.
– I developed severe hip and knee contractures to the point I’m nearly fixed in a seated position even when I’m not in my wheelchair which is a nightmare dressing and getting comfortable at night.
– A combination of no Physio and having to sacrifice leg raisers on my powerchair (due to cost) meant I went on to develop Lymphadema in my legs.
– My circulation in my legs is so poor, despite wrapping up warmly, my legs and feet are constantly blue and black mottled in colour and ice to the touch.
– I lost far more strength in my legs to the point I can only move my feet on my footrests, I cannot raise my legs in the air under my own power. Nor can I lift my arms above shoulder height.
– I lost the ability to stand altogether, crawl and self-transfer.

All of the above have a HUGE impact on my daily life, my self-confidence and my condition overall. All of the above could of been delayed or be not as severe if I’d of been allowed to keep attending Physio as I’d done for the first 18yrs of my life. Yes, MD is progressive and these things would of happened anyway down the line but the point I’m trying to make is, the onset of all these new issues would of been slowed down or prevented altogether (such as the Oedema). That is WORTH it, I and everyone else with a muscle-wasting condition are WORTH it!

5 years after Physio stopped and I developed all these extra issues, I was given a ray of hope.

Improving the quality of lives of adults and young people with Muscular Dystrophy

The NMC provides a range of unique services and specialist advice for people with Muscular Dystrophy ranging from Physiotherapy , Training , Design + Print Services , Support and Advice.

Enjoyed this blog? Why not head over and read Part II of this mini-series focusing on Physiotherapy provision for young people and adults living with muscle-wasting conditions. Here I focus on how attending The Neuromuscular Centre in Winsford, Cheshire has improved the quality of life of me and thousands of others.

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7 thoughts on “Physio After 18 | Incurable muscle-wasting conditions ¦ Part I

  1. Gosh I can't believe you've been through all of this. Yet you remain so strong. I'm looking forward to reading Part 2. I wish you well x #DreamTeam


  2. It is truly awful that the treatments were cut off when they had such a tremendous positive impact on your health. I can't wait to hear about the charity bringing you some hope! #DreamTeam


  3. Oh this must be an awful thing to have to hear. And it can be so devastating to see your condition deteriorating and your body unable to do the things you used to be able to. I'm so sorry #blogcrush


  4. Its terrible to hear you’ve had the same problem as me! I saw a physio every 6 months as a child, in primary school my ancillary did physio with my everyday. Secondary school the daily physio stopped. I saw my physio every week in the summer school holiday when I was 16 BECAUSE she knew I wouldn’t get the support when I turned 17 and became an adult in NHS eyes. Its the only time in my life my fitness increased! I saw an adult physio 6 times and they said that’s all I’m allowed without another referral and it’s unlikely I’d get another because I knew all the exercises I had to do!!


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