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Cycling otherwise: exercise experience in the context of MS

Kath Cuthbert

Open Door - November 2002 pages 8-9

Exercise is good for everybody. It is also good for people with disabilities, including those with MS. The likelihood of losing muscle tone, joint mobility and developing spasticity, for example, are particular risks in this condition. Maintenance of cardio-vascular fitness, as far as this is possible, is also obviously important. There is also evidence that exercise has psychological as well as physical benefits.

As health professionals are well aware, encouraging members of the able-bodied population to exercise is not an altogether easy matter. Exercise possibilities for people with disabilities are likely to be more limited and attempts to exercise are quite likely to be less rewarding. Of course, possibilities are increasing and the success of the last Paralympic games has demonstrated what can be achieved by many disabled athletes.

However, as with the able-bodied population, competitive sport is only likely to be taken up by a minority. Most attempts to encourage exercise among the general population are concerned with promoting the kind of exercise that can be easily integrated into every-day life. Walking regularly and briskly is recommended, but when you cannot walk easily, and certainly not briskly, this is no longer an option.

This account is based on my own exercise experience as a disabled person. I am a psychologist who has MS and a moderate level of mobility problems. I can still walk, but only slowly and with the support of at least one stick, and I tire quickly. I can manage half a mile without too much difficulty and just about reach a mile, but then I am quite exhausted.

I have two objectives in this account. Firstly I intend to show how important maintaining exercise has been for me and the psychological meaning and value that it continues to have. Secondly, I will make comment on a particular form of exercise that may well have the potential to provide a useful option for many people with disabilities, including those with MS.

I have been fortunate only to develop MS well into middle age, and so therefore already had a well established personal pattern of exercise. I had had a fairly active lifestyle. With my partner, I walked regularly in the local countryside and in the nearby Peak District. We also often had short cycle rides on summer evenings and took cycle touring holidays both in this country and abroad.

I enjoyed walking and cycling partly through being out in beautiful places, but also through the experience of active exercise and exertion that is involved. Now that walking is difficult and I cannot even get on to my bike, I have been strongly motivated to find other ways of getting out and about, and if possible taking exercise, to replace my earlier activities.

My first strategy was to buy an electric scooter or 'buggy'. There is a sub-group of the Disabled Drivers Association, the Countryside Access Group, which promotes 'disabled rambles' using such buggies and the reports of their activities were appealing. It is possible to have enjoyable days out on suitable routes and I enjoyed the outings that we took after our acquisition of the buggy. But there was also some degree of frustration. Being out with the buggy was a relatively passive procedure. It is a heavy piece of machinery and there is no easy way of getting over or around the kind of barriers that one often meets in the countryside. My buggy was also annoyingly prone to breaking down, not an unusual occurrence by all reports.

I was still on the lookout for some way of substituting for my earlier cycling activities when I came across handcycles. My handcycle is a wheelchair conversion. The conversion part comprises a single wheel with attached frame, chain wheels providing 21 speed derailleur gears and handlebars, which together provide the front end of the handcycle. This front end is attached to the wheelchair, via an under seat socket to make up the complete handcycle. The handlebars are cranked in a circular push - pull movement of both arms together to provide forward motion for the whole machine.

I had originally expected that the handcycle would be a replacement for my bike but I soon found that I could not keep up with my husband when I was using the handcycle and he was riding his bike. However, all was not lost. I realised that for me, at least, handcycling works best as a walking replacement rather than as a form of proper cycling. Now, when we go on outings into the countryside, my husband walks and I handcycle. The buggy has been relegated to the garage and is now rarely used.

The use of the handcycle, unlike the buggy is very much an active process. Indeed, in many situations it can be quite hard work, providing serious cardio-vascular demands. I see this as an advantage. The effort and active involvement gives a considerable sense of satisfaction and achievement. I am doing this for myself and by myself. There are high levels of intrinsic satisfaction and self-efficacy deriving from the activity itself and from knowing that one is taking positive steps to keep reasonably fit.

We have also had considerable satisfaction from investigating possible routes. Although, of course, there are limits, the handcycle is much lighter than the buggy so that an able bodied companion can assist with 'push power' on short steep sections or 'lifting power' over minor obstacles. It can be fairly readily disassembled for getting over stiles and such like. Thus the challenge of seeing where we can get to becomes a much more interesting, enjoyable and rewarding one.

The reaction of other people has been interesting. Nobody ever stopped us to talk about the buggy. The handcycle, on the other hand, attracts considerable attention and discussion. People are fascinated and superlatives abound. It is frequently described as an amazing, fantastic or marvellous machine. The reactions are quite frequently clearly admiring in terms of where we have managed to get to. Children's comments have an interest of their own. They always see a bike rather than a wheelchair, and one that is most commonly 'cool', but with a great many variations on that theme.

I find these experiences and reactions encouraging, cheering and spirit raising, and they undoubtedly contribute to positive feelings about myself. Together, they have provided important support to my capacity for coping with the problems of MS and to my overall quality of life.

Contacts

Other people will, and do, use their handcycles in different kinds of ways. Many members of the Handcycling Association of the United Kingdom (HCAUK) have a competitive interest and get involved in race meetings, cycle touring and even a handcycling and camping tour through Iceland for the really adventurous.

Contact : Tom Doughty, Chairman HCAUK, 7 Ash House Lane, Little Leigh, Northwich, Cheshire, CW8 4RG, tel: 01606 891988

The Cycling Project for the North West is a cycling charity that has set up a 'Wheels for All' scheme. They have set up 15 centres through northern England where handcycles can be hired or tried out on 'taster days'.

Cycling Project for the North West, 1 Enterprise Park, Agecroft Road, Pendelbury, Manchester, M27 8WA, tel: 0161 745 9944, email: wfa@cycling.org.uk

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