Physio After 18 | The Neuromuscular Centre Part II

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 … Continue reading Physio After 18 | The Neuromuscular Centre Part II

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

Chronic Pain with Neuromuscular Disease

(Title Image incorporating black and white, side profile of me looking weary) Disclaimer: This blog post contains sensitive content some readers may find upsetting. I’m merely sharing my personal experience on this complex topic, therefore it should NOT be a substitute for seeking proper medical advice. Remember everyone and every circumstance is different.When you research Neuromuscular Disease (NMD) and pain, medical extracts will tell you that they don’t or shouldn’t cause pain. What they fail to mention is that they mean the disease itself isn’t painful, though the symptoms associated can very well be. Without the symptoms you can’t have … Continue reading Chronic Pain with Neuromuscular Disease

How My Parents Told Me I Had MD

(Title Image: Childhood photo of me during Physio, standing with a walker) I don’t recall a clear cut day that either of my parents sat down to break the news to me, “Fi, I’m sorry to have to tell you this but you have a muscle disease.” I guess that’s how one would expect to be given such a revelation thanks to the movies! No, I always knew. My parents were very open about my condition. They’d told be bits and pieces (age appropriately) from since before you retain memories, mainly before age 3 I believe. There was no way … Continue reading How My Parents Told Me I Had MD