A patient guide on preparing for a Suprapubic catheter surgery including: prep at home, catheter kit storage solutions, information video, post-op aftercare and developing a routine living with an indwelling catheter. Continue reading Preparing for a Suprapubic Catheter
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
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
(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
(Pictured: A 2 part title image. The first features a ventilator where the display screen instead of graphs and breath rates reads; “5 Years to Acceptance.” Next to it is a photo of me with my vent mask on with long tubing, over it is a comical SnapChat filter where it puts cartoon cat ears and nose on me on my vent) I didn’t think I’d ever be writing about myself using NIV (Non-Invasive Ventilation), never mind felt bold and at peace enough with it to pubically display a picture of me on it! This may in fact be the … Continue reading My Journey Adjusting to NIV | 5 Years to Acceptance!