The Reality of Muscular Dystrophy – Guest Post by Kerry

Kerry’s guest post is the 43rd post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Kerry!

Hi-Di-Hi, my name is Kerry I’m from the land of the concrete cows and Roundabound – Milton Keynes. My blog is My Life, Kerry’s Way, it’s funnily about me! My Disability, Mental Health and Campaigning work mainly around Changing Places toilets (my fave subject as my hubby likes to say). I’m lucky to have such an amazing partner, we’ve been together 13 years, married 5 with our two cats, Skype and Fudge.

My Story

I have a rare form of Muscular Dystrophy, a progressive muscle wasting disease. I was diagnosed at 24 I’m now 29 with 11 years’ experience!! When I was growing up, there was always a high chance I would someday start to show symptoms of having Muscular Dystrophy as I grow up, having a Mum that was diagnosed at 19, then when my Brother was diagnosed at 5/6, he’s younger than myself, It looked like it could have missed my generation.

At 19, I start noticing I was walking with a limp, losing my balance more, struggling to hold my head up, and losing strength in my arms and legs. But growing up I was pretty normal (well whatever normal is these days) playing out with friends, enjoyed most sports – rounders, netball, rugby, and I had a horse, so did a lot of riding. Nothing that would ever suggest I might have Muscular Dystrophy.

Common Symptoms

Most common symptoms with Muscular Dystrophy is the loss of muscle strength within your arms and legs.

How It Affects Me

Unfortunately, it doesn’t just affect my arms and legs, it also affects my respiratory muscles, so, my lungs.

Most people are unaware that there are 40 different types of Muscular Dystrophy that affect people in many different ways, it’s very much an umbrella disease.

I lost the ability to walk in my early 30’s. I’m now reliant on my powered wheelchair as my legs, a blonde in charge of a power chair is so much fun!!

Learning To Adapt

Over the years I’ve learned to adapt many times, like being right-handed all my life, but with my right arm being the weakest, over the years I’ve had to learn how to use my left hand for pretty much everything, like writing, eating one handed, and signature. It’s been hard changing, definitely felt very unnatural to begin with.

My lungs being weak means I have several different machines like a cough assist, this helps to keep my lungs as clear from any infection as much as it can, it pushes air into my lungs opening them up, then sucks the air back out creating a cough. My life is affected in many different ways but if I’ve learnt anything over the years, it is to quickly adapt.

I’m not going to say mentally it hasn’t been hard over the years, being able-bodied to your body pretty much stop working how it should.

Changing As A Person

It’s definitely changed me as a person, I see things very differently; it’s very hard not to. You’re treated differently, and seen differently. I’ve grown into a far better person, more understanding, very patient, and humble. I want to achieve more.

My blogging and campaigning have changed my life in ways that never would have happened if I wasn’t disabled, I’ve been lucky enough to meet some truly amazing people and built great lifelong friendships. My MDBloggersCrew (come follow us on Twitter!)

I’ve become a multi award-winning campaigner in my campaigning for my work with Tesco in building over 40 changing places toilets with more to follow, made it into the Shaw Trust Power 100, so to say my Disability has changed my life is an understatement.

The biggest lesson I’ve learned is, it doesn’t matter what Disabilities you have, you’re still fabulous and can achieve anything you put your mind to.

My Favourite Superhero

Captain Marvel ~ she’s sassy, funny, takes no sh*t. She’s me but without the wheels. Love her!

Thanks Kerry for sharing your story with my readers and me!

If you would like to stay up to date with Kerry, then you can find her on Twitter & Facebook!

Posted by

Hey fellow superheroes! I'm Ami, I'm 24 and I live in Norfolk, UK. On my blog, UndercoverSuperhero, I openly talk about my recovery journey which stemmed from being in hospital and a specialist neurological rehabilitation centre for 9 months. I talk about how I maintain a positive mindset whilst coming to terms with my disability. I love superheroes, so much so that my partner and I are having a superhero themed wedding! I generally like to talk about anything and everything on my blog, I also have an ongoing series called "The Reality of..." which allows readers and bloggers to raise awareness of the disabilities, mental illnesses, chronic illnesses, impairments, that they live with as it is so important to raise awareness! Everybody has a voice! 💚

3 thoughts on “The Reality of Muscular Dystrophy – Guest Post by Kerry

  1. That was good to read, thank you. Changing Places is brilliant concept and it’s so fabulous to hear that Tesco’s are coming good.
    Well done. you are a star.

    Liked by 1 person

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