Exercising, easy right?
As easy and simple as putting on your lycra outfit, sweat bands and saying ‘okay let’s do this’ with Olivia Newton-John ‘let’s get physical’ playing in the background.
However, how realistic is that for many disabled people? Especially if you’re unable to do any physical exercise or be one with nature on a long walk.
It’s hard to find a professional/s i.e. physiotherapist. That has a real understanding of muscular dystrophy and how it affects every part of your body inside and out – you can feel lost, unheard and unimportant. Sent home with a fact sheet of exercises and stretches to do. with no follow up or even asked if you’re able to continue the fact sheet of exercises at home!
For those who don’t know, The form of Muscular Dystrophy i have is a rare progressive muscle-wasting condition, meaning that those of us that have a progressive form of MD will continue to lose muscle strength over time and with exertion. The disease doesn’t stop or decide to take a holiday. Slowly but surely over the years, some of the actions I used to be able to do, like stepping into the shower, standing by myself with help, walking and getting dressed, become either no longer safe on my own, extremely difficult or stopped all together.
Most adults living with muscular dystrophy or a related neuromuscular condition cannot access on-going physiotherapy through their local health service. However, having regular physiotherapy can make a huge difference, slowing down muscle loss, easing pain and maintaining mobility.
I’d heard of the Muscular Dystrophy support centre a few years back from friends, who always spoke highly of the work they do with people with MD. At that point in my life it was so far out of my reach of accessing – being an hour away from home and no way of being able to get there. It wasn’t until I got my WAV (wheelchair accessible vehicle) the thought of being able to access something that could help keep my muscles moving wasn’t just a pipe dream anymore, it was now in muscle reach.
The Muscular Dystrophy Support Centre is a nonprofit organisation that provides regular physiotherapy and complementary therapies to maximise physical well-being, including osteopathy, acupuncture, massage and nutrition therapy.
The referral was in. A date was set for my induction to the service. I was secretly excited. But those lingering thoughts in the back of my head were hard not to listen to. Am I expecting to much could this be just another service that send me wheeling away with yet more fact sheets!
The feeling I felt coming away from MDSC was nothing more than relief and for the first time heard – I was lucky enough to have my induction with Taher the clerical service manager.
I didn’t have to explain or constantly repeat myself as to how muscular dystrophy affects my body, or what I can and can’t do. It was a breath of fresh air to just talk to someone that wasn’t telling me what they thought I needed. For the first time i was asked what It was I needed and so was my husband, for years no one has cared about my husband and everything that he does or watches me go through.
My husband was given a few tips that would help him when getting me in and out of bed.
As crazy as this sounds I live for my monthly sessions with the physio team and osteopath to be pulled, stretched and massaged. Bring on the pain I can totally handle it – however, my face might tell a different story!!
All the tension and tightness in my muscles, neck and shoulders is gone. I can breathe better, as in my lungs feel more open. After a two hour session i am ready to take a siesta . But in the same sentence, I feel refreshed..
I’ve been a few times now, it’s hard not to fall in love with each and everyone one that work at MDSC – it’s not just a service it’s a family that cares!
You can donate to this incredible charity that helps so many of their service users already. It would be incredible to see more centres open or just want to check out their events by clicking here
#MuscleMatter
Until next time K
Kerry Thompson - My Life, Kerry's Way. 