Muscular Dystrophies – of which Duchenne is one of the most common – are a group of inherited genetic conditions. These cause muscles to gradually weaken and the conditions are progressive over time, leading to an increasing level of disability.
There is no cure for Muscular Dystrophy but treatments can help manage some of the symptoms. Not all types cause severe disability but Duchenne Muscular Dystrophy in particular often significantly impacts mobility.
Physical Activity with Duchenne Muscular Dystrophy
People with Muscular Dystrophy benefit enormously from physiotherapy and general low impact exercise however, being a degenerative disease, exercise will become more challenging as the condition progresses.
Some physical activities such as walking, swimming and bicycling are particularly beneficial for those with Muscular Dystrophy and, when properly supported, the gentle exercise of weakening muscles can be hugely beneficial.
Cycling for Duchenne Muscular Dystrophy
The overarching consideration when building a trike for a person with a progressive Muscular Dystrophy such as Duchenne’s MD, or Becker’s MD, is that the person’s mobility and ability to cycle may deteriorate over time. However, if that situation is planned for during the assessment and the trike can be adapted or accessorised as each milestone is reached, then cycling can remain a valuable part of a therapy and exercise regime for many years to come.
There are a variety of considerations at the assessment and design stage. Firstly, access can be made easier with the provision of a Swivel Saddle ™. If a hoist is necessary, our low sitting trikes with their open design makes access easier, whilst our Tamara Trike with its tilt-away backrest, and Swivel Saddle ™ is specifically designed for hoist users.
Secondly, gearing is worth considering. As muscle strength deteriorates a lower gear can make pedalling easier and it is a feature of every Tomcat that the gearing can be changed retrospectively. Trikes that have a built in geared hub will have a selection of up to 8 speeds (gears) as standard, but in most cases we can retrospectively adjust the whole range when required.
Crank Length is a significant consideration also. At the time of build the crank length will be calculated and matched to the rider’s physiology – however, as this changes with age and bodyweight increases, the crank length may become unsuitably short and hard-going. However, this can be periodically reviewed and essential changes made to a trike’s general setup and critical geometric features.
A further important factor is trike weight and quality of build. It is not possible to reduce trike weight as a condition progresses, but a well designed trike will be tough yet lightweight in its design. It is common for a Tomcat to weigh less than half the weight of other special needs trikes (just 13kg for a base model Fizz) and with every extra 3kg equating to riding with a house brick in your pocket it is easy to see that starting with a tough but lightweight trike is a critical consideration going forward. Tomcat’s superb transportation features also make a difference by subdividing even the most complex trikes into easily managed parts.
Quality of build is another important way to conserve pedalling effort, that is why we only use lifetime sealed ball bearings throughout the wheel, axle and drive system.
In recent years, Tomcat has pioneered the way forward with electric power assistance for special needs and mobility trikes and this can be a tremendous help when muscle mass or strength deteriorates. Essentially we have developed two types of drive:
- Pedal Assist
Pedal assist, as its name suggests, augments the rider’s pedal action with an electric motor drive. A start button accelerates the trike from a standing start to a maximum of 4mph (6kph), and thereafter the motor responds to pedal action up to a maximum of 15.5mph (28kph). There are seven power settings to choose from between fully manual and almost fully motor powered. The system is intelligent and the motor automatically applies more torque to keep your speed constant when encountering gradients. The only limitation here is that you must be over 14yrs of age to ride a pedal assisted trike.
- Bionic Buddy
Unlike Pedal Assist which is a built-in feature, Bionic Buddy™ is a retrofittable accessory that can be used by children under 14. It has a maximum speed of 3mph, (a brisk walk) and is therefore very suitable for Carer Controlled™ trikes where the carer controls the drive – but it can also be independently rider operated. It does not require the rider to pedal and is throttle operated. Bionic Buddy™ can be engaged or disengaged depending upon choice, and can be easily removed when not required.
In summary, the progressive nature of Muscular Dystrophy means that the trike you purchase to keep you fit and active must have a plan to deal with changes that may come with time.
For example if the right drive for you is a single speed fixed drive, it will make sense to fit a Dual Drive™ at outset, (switchable fixed and free-wheel drive). so that a trailer accessory (requires free-wheel) could be added at a later date when self propulsion becomes challenging. At Tomcat, it is part of our custom building policy to advise and recommend the best choices with those milestones in mind.
Secondly it is essential that your trike supplier has the skill, and will, to make the necessary adaptations to your trike as your condition progresses. As we customise and build all our trikes in Gloucester and have a nationwide network of assessors, we are always able to review your progress and make any adaptations that were planned all along, or become necessary with time.