This article first appeared in the Information Point newsletter in 2016 when Toni Abram who is diagnosed with dominant centronuclear myopathy wrote about taking part in a Spaceathlon Challenge to raise funds for the Neuromuscular Centre, where she attends for physiotheraphy treatment with her father Mike.
During May my dad and I took part in a Spaceathlon Challenge to raise funds for the Neuromuscular Centre (NMC) in Cheshire, where we both attend for physiotherapy treatment. The NMC is a national Centre of Excellence for adults with muscular dystrophy, providing ongoing, specialist physiotherapy, employment and training, advice and support to 1,000 individuals (and their friends, families, and carers) affected by neuromuscular conditions.
The centre is also a charity and 60% of the running costs of the centre come from fundraising but its services are free for its service users, many of whom travel from across the country and further afield to access the knowledge and expertise available.
Neuromuscular conditions affect over 70,000 individuals in the UK and range in severity, onset and presentation. Some conditions are diagnosed at birth, while others do not become apparent until later in life, as was the case with dad and me. However, all conditions present challenges and affect independence, mobility and quality of life and all share one unifying feature, muscle weakness, which is often progressive and can lead to changes in the ability to walk, climb stairs, washing and dressing. Individuals affected by neuromuscular conditions are often less mobile, less able to access active exercise and therefore more at risk of secondary health problems in the future.
You can learn more about the NMC and neuromuscular conditions in the short film below.
Toni and Mike
Dad and I began attending the NMC shortly after getting our diagnosis of centronuclear myopathy and are incredibly fortunate that it is almost on our doorstep. Finding the NMC was a godsend, for on getting our diagnosis, we were told there were very few others in the world with the illness, that there was no treatment and that no long term prognosis could be provided. In addition no counselling was given to help us come to terms with what our futures held and to enable us to deal with our diagnosis emotionally.
For a while previously, I had attended a physiotherapy clinic at my local hospital – the physio who was not trained to understand muscle diseases would spend considerable time twisting and moulding my body and placing my feet and arms in a particular way, only for me to immediately ‘flop’ the moment she left me to stand alone because my muscles are simply not strong enough and therefore totally resisted this regularly prescribed type of physio treatment. Attending for physio at the NMC however is a different matter entirely. My treatment is designed for me and rather than trying to make my body work normally or trying to cure me, the focus is on maintaining the movement and flexibility that I currently have for as long as possible. My physio’s understand muscle disease and always take the time to ask about recurring problems or whether there are any new issues since my last visit and are able to offer a number of ‘on site’ solutions for regular or one off aches and pains, such as an infra red heat lamp, ultrasound and ‘wellies’ which help with circulation problems.
Attending the centre has also connected my father and I to others with muscle diseases and although they have different conditions to us (there are 60 to 70 types of MD), they understand what we are going through, as we all experience similar physical problems. The NMC also provides other types of support, for instance they were able to advise me on an Access to Work scheme and provide me with a letter of support to give to my employer and I know that should I require any other assistance in the future, they would be there for me.
Without the NMC my father and I would still be living with the knowledge that we have a chronic health condition but feeling very isolated and not knowing where to turn for help and support and although we are both aware that our condition is progressing and that there is no cure for us, attending the NMC has enabled us to re-gain some control in the battle against our disease. We are grateful to have found a sort of home inside the walls of the NMC and taking part in the Spaceathlon, is an opportunity for dad and I to give something back by taking part in a fundraising activity for the centre. Also to raise awareness of the work of the centre and the benefits of exercise for people with muscle conditions, as well as improving our own fitness.
Inspired by British Astronaut Tim Peake, the effects of zero gravity during space flights which cause astronauts to experience loss of muscle tissue and bone density and the Space to Earth Challenge set by Tim to get fit with him, the aim of the Spaceathlon is simple, to encourage the whole NMC community to contribute to a cumulative distance of 460km (the maximum distance between the earth and the ISS) by taking part in physical activities and to raise funds for the centre in the process. Based on a triathlon, participants could walk using a cross trainer, cycle using pedals or assisted arm pedals, swim in the hydro pool or row using the rowing machine.
Research indicates that exercise (at an appropriate intensity and frequency) is beneficial for individuals with muscle conditions, not only in providing a stimulus to maintain muscle strength but also improving whole body fitness and reducing soft tissue tightness and pain. So the NMC has asked their clients to think about their own levels of activity and to set themselves a challenge. This could take the form of a specific time or distance or simply doing a little more active exercise than usual (as is the case with dad and I), with some clients aiming to cover a half marathon distance on the centres bespoke, wheelchair accessible arm and leg pedals, swimming the length of the ISS in the hydrotherapy pool or rowing to the stratosphere. While some are incorporating three elements to their Spaceathlon challenge, linking it with the triathlon theme.
The science bit
So how does Tim Peake and the Space to Earth Challenge relate to neuromuscular conditions? The progressive nature of muscle conditions is similar to observations made of astronauts in space. After five months in orbit above the earth an astronaut would typically lose as much as 40% of muscle and 12% of bone mass. Therefore astronauts have to undergo daily rigorous exercise to try to help counteract the loss of bone and muscle fibre, together with other risks such as shrinking legs due to fluid redistribution, deterioration of weight baring bonus and muscles and forgetting how to walk, that come with living in microgravity. And just like like an astronaut, if people with neuromuscular conditions don’t exercise, their muscles will waste away faster still, so some physical activity, despite what people might think, is really important. It is not at all easy but helps with cardiorespiratory fitness, energy efficiency, weight management and muscle performance – exercising muscles maintains flexibility, length and strength and helps maintain better function for longer.
Similar to a thermostat that only maintains a temperature when it is needed, bodies only maintain or build muscle when muscles are used repeatly. This is why body builders are able to gain muscle bulk by repeated weight lifting and also the reason why astronauts need to do so much exercise when in space – where the lack of gravity reduces the stimulation the body would normally receive from physical activity, taking away muscle tissue and bone it believes to be unnecessary. This mechanism is reproduced in neuromuscular conditions, where reduced activity and reliance upon powered mobility aids such as wheelchairs, leads to a reduction in muscle mass.
35 participants took part in the Spaceathlon raising around £4,000. The Space Crew covered the 460km to the International Space Station and made it back to earth too, a total of 920km but the actual total reached was 1,000+ km and all this without adding on the distances covered by people who did their challenge outside of the centre (which included three triathlons, 1,000 lengths of swimming and walking.
Donate and get involved
If after reading this, you would like to make a donation or get involved with the work of the centre, you can do so below.