Pilates in EDS and CMT

My Pilates journey.

At the medical conferences that I attend, be it related to Charcot Marie Tooth disease (CMT), Ehlers-Danlos syndrome (EDS) or for EDS kids, people ask the experts again and again ‘What can I do for myself to improve my physical condition? (Or that of my kids) Where do we start? People genuinely don’t want to struggle anymore they are ready to help themselves, to fight to keep their mobility, but are at a loss as to where to begin.  Many have had bad experiences with physiotherapy, can’t access the right services or have given up trying and as a result have become more de-conditioned.  Making everything harder.  The answer from the professionals is always move more and take up activities like swimming and Pilates.

Joseph Pilates developed his method of ‘contrology’  during the early twentiety century.  The art of controlled movements, which when carried out and practiced with consistency, will improve flexibility, build strength and develop control and endurance in the entire body.  This method which is now widely known as ‘Pilates’ puts emphasis on alignment, breathing, developing a strong core, and improving coordination and balance.

I discovered Pilates after having major re-alignment surgery to my right knee, at this point I had been diagnosed with Charcot Marie Tooth disease and I had just had my second child.  To be honest my body was a mess, weak, unstable, and my mobility had become significantly reduced.  My physiotherapist recommend it as part of my long term rehabilitation.  To be able to attend the class safely I first had a couple of 1-1 sessions with my instructor to fully work out my limitations and grasp the basics.

We quickly realised that kneeling was a no no and any exercises involving balance were particularly challenging.  The activities were adapted where they needed to be to keep me safe and allow me to participate fully.  It was hard work but In my mind I had accepted that I may never progress past beginner level.  I knew that I needed to keep moving and maintain strength.  I was beginning to realise how important it was to keep the muscle tone that I had, with a neuromuscular condition l
ke CMT, once you lose it it’s gone forever. For those of you that know Pilates will understand when I say that my hips were so weak that I could not do a shoulder bridge.  When I held my leg in the air to do one leg circles they were so weak they would shake uncontrollably and the movement that I was able to make was tiny.  I couldn’t stand on one leg – at all.  To stand still on two legs took great concentration and I couldn’t even contemplate raising on to the balls of my feet.
I persevered.  After ever class my body hurt, really hurt but over time I began to get stronger, my alignment better and my fatigue less.

It’s been eight years and I have collected an Ehlers-Danlos syndrome diagnosis and another child but I still go to class each week (and I did throughout my pregnancy) and I carry out Pilates type physiotherapy exercises most days at home.  Reflecting back over the past 10 years I can say that Pilates has had a huge part to play in saving my mobility.  In class each week I blend seamlessly with the rest of the students.  I can shoulder bridge and activate my glutes, stand on one leg and move my arms, I can raise onto the balls of my feet (although combining this with an arm movement is still a bit tricky) and all because I practise this every time a make a cup of tea at home, prioritiing and planning in a time to do this exercise regularly.  I still don’t like one leg circles particularly but I can do them with control and a much bigger range of movement.  Only with consistency and continual practise at home has this been possible.

Don’t get me wrong it’s not perfect, Sometimes I have dislocated and have to be a little more careful in class but the movements in Pilates are so controlled and kept within a safe range of motion that I am usually fine.  A few weeks ago I had quite a traumatic knee dislocation, 5 days later I was in class and there were only two exercises that I had to be careful with where my leg was straight and knee facing the mat in a particularly vulnerable position.  I have also had subluxations in class, many actually, but I manage to stop the movement before the joint is fully dislocated.  Only once did my shoulder blade not fully relocate for about 10 minutes.  I have also come very close to syncope (fainting) a few times, particularly after moving from laying to standing in the middle of the class.  There was one occasion where I really couldn’t style it out and tested my teachers first aid skills as she lay me on the floor with my feet in the air fanning me.

But I’m there,  I’m moving and I’m getting stronger.

I saw a Dr in my early 20’s before any name had been given to my conditions who told me quite clearly that I would be a wheelchair user by my mid 30’s.  Another more recently reflected back over my history, surgeries and diagnoses and said I should be proud of the fight that I am giving to EDS and CMT, most would be using a wheelchair now with my history.  I am defying the typical path, perhaps because I’m a little stubborn and I don’t like fitting in a box,  I definitely like a challenge but I know that in my heart Pilates has a huge part to play.

 Do you live in West London? I am very fortunate to have an amazingly talented Pilates instructor who has been by my side every step of the way.  Professional, highly qualified, and  above all passionate about Pilates – I couldn’t reccomend her highly enough.  Mary Clarke-Mills – Pilates 4 Life – This is a little of what Mary has to say…

Joseph Pilates grew up suffering from rickets, asthma and rheumatic fever and would have been considered today as someone with special conditions. He became obsessed with the frailties of the body and through his study of the musculature  was determined to overcome his own afflictions. And hence what we now call Pilates was born.  The amazing benefits of Pilates are universal.
Written by Sarah Wells

Thanks for stopping by… My name is Sarah, I’m a mum, wife, writer, blogger, advocate and occasional public speaker. This is my blog, where I share our life with the world while raising my children to be happy with their perfect imperfections :)