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

Sticky Post

Trip to Chester Zoo! | Courtesy of The Willow Foundation

Back in 2016, finding it difficult to get out with now 2 young children under 5 as a wheelchair user myself with a life-limiting muscle wasting condition, I applied for a ‘Special Day’ via The Willow Foundation. I’d actually known … Continue reading Trip to Chester Zoo! | Courtesy of The Willow Foundation

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

Changing Places Campaign | #FitToBurst Part II | When Doctors Don’t Listen

 (Title Image: Lady stick figure desperate for the loo, + wheelchair symbol = Changing Places toilets) This post is part of a series focusing on Changing Places, in collaboration with Muscular Dystrophy UK’s #FitToBurst Campaign. It might be helpful to read PART ONE FIRST!👍 Where we left off in Part 1, I had been referred to a Urologist to discuss the ins and outs of what it will take for me to undergo unnecessary surgery for a Suprapubic Catheter (aka SPC). Fast forward 4 months to November, I was seen at Royal Bolton Hospital. Before I go into what was said … Continue reading Changing Places Campaign | #FitToBurst Part II | When Doctors Don’t Listen

100,000 Genome Project | Answers for Ava

(Title Image: Photo of Ava and I reading a book, coming off a strand of DNA) Yesterday Ava had her annual physical exam at St Mary’s, Manchester Genetics department. Our old geneticist Dr Kingston had recently retired sadly, but we were transferred to the capable hands of her replacement Dr Browynn. Although we came out no further knowing Ava’s future, we came away with something we didn’t have before… HOPE. The Back Story (IMAGE: Diagram showing the autosomal dominant inheritance pattern if one parent is affected. Showing 25% probability child will be affected) If you’re new to our journey, we … Continue reading 100,000 Genome Project | Answers for Ava

Ava’s NICU Journey | A Surprise Delivery! | NICU Awareness Month

Ava Harriet was born on 24th September 2015, weighing a tiny 4lb 10oz. Just like her big sister Abbigail, Ava was born by elective c-section via general anesthesia, planned months in advance in a very controlled setting due to complications surrounding my muscle wasting disease. To understand more about this please visit my Pregnancy & Childbirth post for more details. Although I got given a different team of specialists with it being 3 years on from my first pregnancy, everything as far as the birth plan was exactly the same as it was with my first. If it’s not broken … Continue reading Ava’s NICU Journey | A Surprise Delivery! | NICU Awareness Month

My Journey Adjusting to NIV | 5 Years to Acceptance!

(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!