I was born and grew up in Bristol, South West England, with my parents and younger brother. As a child I enjoyed gymnastics, trampolining, horse riding, swimming and majorettes. I remember doing handstands and cartwheels on the school field with my friends one day aged around 10/11 and my arms collapsed under me when I did a handstand. I didn’t really think anything of it at the time, but I semi-consciously decided to just stop doing handstands. Looking back, this is probably the first sign of FSHD that I can remember, aside from my slightly winging shoulder blades (put down to the fact I was a skinny child) and my inability to whistle or wink, which in hindsight we now know are symptoms of the condition.

I was diagnosed with FSHD aged 12, after my Majorette leader noticed I couldn’t hold my arms up in the air for a move I needed to do for our routine. He told my parents when they picked me up that night, and we went through 6 months of blood tests, strength/balance tests, nerve conduction tests and finally a muscle biopsy from my left thigh. I‘m the first and only mutation of FSHD in my family.

My first question to the Doctor when they told my I had FSHD was “can I still ride horses?”. The answer was yes, although it wouldn’t have made any difference if they said no – I wasn’t going to let this stop me from doing something I love. I‘m proud to say I’ve kept that attitude throughout my life!
I was relatively unaffected through my school years, with the main issue I had being unable to run. After I was diagnosed, I remember having to do a running test during sport at senior school one day, and I fell over twice. My PE teacher pulled me out of the test without making any
fuss, and from then on, quietly kept me out of any running tests or similar activities for the rest of my school years.

I was lucky to have a very supportive school, as well as good friends who didn’t make a big deal about me having FSHD. I‘m lucky that I had a relatively normal school life, and passed with good grades, went through college and then university to graduate in new media production. I wanted to be a journalist, magazine editor or a TV production crew member when I was growing up. After finishing University, I emigrated to New Zealand with my boyfriend (now husband) and started a web design and development company called Wicked Eye. I‘m pleased that I ended up working in a similar creative industry that I wanted to be in from a young age.

I noticed my first deterioration in mobility after I started driving aged 17 – probably because I was walking a lot less with my new found driving freedom! I started finding it more difficult to climb stairs and to get up from sitting on the floor, although I managed to find a way to do both for a while. FSHD is all about adapting to the new challenges and weaknesses that get thrown at you, and finding ways around them for as long as you can.
My balance started to get quite affected in my late 20‘s and I started walking with a stick. Then I “gave in” to using a manual wheelchair for outings when I was in my early 30‘s, and moved onto an electric wheelchair in the last few years. Using an electric wheelchair proved to be the opposite of the “confined” feeling of “giving up” that I thought it would be. It‘s actually quite empowering! I can now move around a lot quicker, much more safely, I can cover bigger
distances and get to places I never could have done on my own two feet! The funniest moment in my wheelchair so far was during a trip to England a couple of years ago. We went to Dartmoor (in South West England) and wanted to go up one of the Tors as a family (a big hill with rocky outcrops and wild horses running around the place). I wasn’t sure if my electric chair would make it, but decided to give it a go. I made it to the top which was awesome but coming down was a lot scarier as my wheelchair slipped and slid on the steep bits, so my husband had to hang onto the back of it in some places to stop me taking off down the hill! The look on people‘s faces we passed was priceless!

Another time we went to the ski field with my “modified” manual chair they stopped the ski lift chairs so I could get on, and then one of the staff members took my manual chair down on his lap on the chair in front, and down we went to the nursery slopes. As we were coming down the lift our then 10-year-old son was throwing snowballs and me and Mum in the lift and again, the astonished look on people‘s faces that this child was throwing snowballs at a “helpless” disabled person was priceless! Mum and I were in hysterics! I think the main thing to focus on at any stage of mobility difficulties is not what you can‘t do, but what you can. Even if that means pushing your mobility equipment to (and sometimes over) it‘s limits!
My biggest passion and hobby in life in the last 11 years is horse riding. I started riding again at my local Riding for Disabled centre (RDA) when I was 27 after a 12 year break.

It was a lot different than I remembered, with my muscle weakness a lot worse than when I last rode a horse as a child. I worked hard through an 18-month RDA therapy programe to develop my riding skills again, and in 2010 I was ready to take the step back into para dressage competition.

FSHD means I can only ride at walk, and I need a team of helpers to help me look after, ride and compete my horse. Yes, I wish I didn’t have FSHD and I wish i could catch, groom and tack up my own horse, ride on my own, trot and canter my horse, and compete at a higher level than I can, but on the other hand, if I didn’t have FSHD and need all this help to do something I love, I wouldn’t have met the amazing people that I have. I wouldn’t have learned the training techniques that I use now, and I wouldn’t have been given the fantastic opportunities that have come my way over the last few years, including being given the ride on the fabulous horse that I have in my paddock. I‘m hoping more opportunities will come my way in the future too, including competing overseas for NZ.
I‘m very passionate about promoting para dressage here in New Zealand and would love more people to get involved in the sport, both for the physical exercise side, as well as the social side of meeting new people, and being able to be competitive in a sport on a level playing field. Horses are amazing creatures, and being able to communicate with your horse using the most subtle queues, and adapt your training to suit your own abilities is something I still find so interesting and incredibly rewarding.

Looking to the future, I know that my mobility is going to decline and I will be faced with more challenges. Every day things like getting out of bed, showering, getting dressed and many other every day tasks will get harder or even impossible. I will continue to find ways to keep doing as much as I can myself, and will accept help when I need to (even though I like to be quite independent). I just know I need to keep doing as much as I can, while I still can, and get as much out of life as possible!

Once a treatment or cure is found, the first thing I would do is canter my horse down the beach, wind in my hair and the sea water flicking up in my face! It‘s been a dream of mine since I was 10 years old. I finally fulfilled part of that dream in 2015 when I walked my horse on the beach for the first time and it was amazing! I would love to take it one step further and get to canter through the waves one day so come on researchers – you‘re so close to a treatment!

Jodie Thorne, 38

Photo Credit – Libby Law Photography