Exercise for adults with a neuromuscular conditions

Elly lives in Stockport in the UK, she is diagnosed with an unknown form of centronuclear myopathy and attends the Neuromuscular Centre in Winsford for physio treatment. In 2015 she told the Information Point how this had led to her joining a gym.

We are always being told that exercise is good for us, but having a neuromuscular condition can make exercising seem difficult or even impossible.

About two and a half years ago I started going to the Neuromuscular Centre (NMC) in Winsford for physiotherapy every four weeks. At the end of my session I would have a go on an exercise bike they have there. My physiotherapist suggested that I would benefit from using a bike between sessions, so I decided I had two options to achieve this, either buy an exercise bike or join a gym.

I quickly decided that I wasn’t going to buy a bike, as I’m not the best at exercising at home – too many distractions and a lack of self discipline. So I had to join a gym. I used to go to a gym before my diagnosis, thinking it would build my strength but I just got frustrated with the total lack of any improvement and I struggled to use some of the equipment. The only benefit from my previous gym experience was it highlighted there really was a problem with my muscles and made me determined to get a diagnosis.

I went online to look for a local gym that wasn’t too expensive to join, and discovered that there’s a GP exercise referral scheme in my area. This provides subsidised gym membership to anyone who has a long term heath condition, is fairly inactive and isn’t already a gym member. All I had to do was get my GP to refer me which they were happy to do. The main benefit of this scheme for me, was that you are seen by an instructor who has knowledge of health conditions and is aware that you may find exercising difficult.

My first meeting with my instructor was just a chat to find out what I felt I wanted to achieve, and how my condition affected me. I was surprised when he said he’d worked with people with muscular dystrophy before. This was at a sports centre just down the road from me where I also go swimming, but he suggested I go to a gym slightly further away which he also covers, as it has more equipment that would be suitable for me.

I dug out my old gym trainers and went for my first session the following week. As well as going on an exercise bike – which had been the reason for me joining, I was shown two other pieces of equipment. The first was a ‘scifit’ hand cycle which is suitable for all abilities, it has a removable seat so is also suitable for wheelchair users and can be set with very low resistance. I then went on an elliptical cross trainer which is used from a seated position rather than standing, this also starts at a very low resistance level. I’ve been going to the gym for about eighteen months now, usually twice a week. For the first six months I just stuck to using the same three pieces of equipment, slowly increasing the resistance and time spent on each one, although I can only use the bike on the lowest setting.

I recently had a go of a rowing machine at the NMC, this gave me the confidence to introduce rowing into my routine at the gym. I also use some fixed weight resistance equipment, again on the lightest setting. I wouldn’t say that I’ve gained any strength, or that I can walk any further but I think my stamina has improved so I don’t get as out of breath as before and my posture is a little better. I also feel my self confidence has improved. So I’ve definitely benefited from going to the gym, and I’m thankful to the NMC for encouraging me to do this.

Last year Muscular Dystrophy UK brought out exercise guidelines for people with a neuromuscular conditions. It contains a lot of useful tips and had it been available when I first joined the gym, I would have printed it off and taken it along with me. I find the advice that exercise shouldn’t be too strenuous, and you should feel ‘comfortably out breath’ helpful to keep in mind, as sometimes I’ll have a day when I can’t manage the distance or level I’ve achieved before and this doesn’t matter, so long as I’m exercising and getting a little breathless it’s worthwhile.

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