This story first appeared in the Information Point newsletter Our World in 2012, when The Information Point spoke with Gill Storey, Head of Physiotherapy at the Neuromuscular Centre, a charity that supports people with muscular dystrophy, to learn more about the benefits of physiotherapy for people with muscular dystrophy.
Muscular Dystrophy (MD) is a range of hereditary progressive long term muscle wasting diseases that lead to loss of function and mobility. There are more than 60 different types of MD including centronuclear and myotubular myopathy, which present with varying patterns of disability.
Our muscles enable us to move, breathe, eat and circulate blood throughout the body. However, people with MD may find their ability to carry out these functions is compromised.
Physiotherapy is a range of physical interventions and services aimed at restoring and improving the function and movement of people with MD to maximise their quality of life.
Tell us about the Neuromuscular Centre
The Neuromuscular Centre is a small charity established twenty one years ago to provide physiotherapy, education, care and support to adults with MD. We have a physiotherapy team of seven staff, six of whom are CSP registered and HPC registered and members of national and regional neuromuscular networks and a clinical specialist involved in research trials, national policy and care pathway development for MD.
Why do people with MD need physiotherapy
People with MD need specialist physiotherapy to maintain joint range, strength, mobility function and independence for as long as possible. Physiotherapy benefits those with MD because if muscles are not used they get weaker and smaller and are unable to carry out their normal function, for example if someone has weak thigh muscles (quadriceps) they will not be able to climb stairs.
Although people with MD cannot be cured, physio can be adapted to meet the changing needs of the patients and is crucial in delaying the need to go into a wheelchair, preventing falls and resulting injuries.
What does a physiotherapy programme for someone with MD involve
The range of treatments available are:
- personalised exercise programmes to maximise muscle power and ability
- muscle stretching techniques to maintain and improve joint range
- assisted standing using tilt tables or standing frames to promote weight bearing, aid digestion, respiratory and cardiac function and bone density
- acupuncture can be used to treat chronic pain commonly caused by poor posture and positioning in MD
- chest physiotherapy to improve lung function, prevent chest infections and avoid hospital admission
- access specialist exercise equipment that enables people with varying muscle power to perform to their maximum ability
- use of massage, mobilisation techniques to treat injury and long term chronic pain
- equipment advice and carer support
If muscle function has been lost can it be re-gained
Normally muscle power can be improved with exercise but with muscular dystrophy the muscle is inefficient and although normal power cannot be restored, it can be improved and maintained, although this varies from person to person depending on the type of MD.
Why is exercise appropriate
Exercise of an appropriate intensity and frequency tailored to the individuals needs and planned and monitored by an informed professional is beneficial to muscle strength, function and general fitness. However over exercise or inappropriate exercise can have a detrimental effect to muscles.
Does treatment need to fit an individual or does one size fit all
There are certain areas that you would expect to be affected with different conditions for example it would be expected that someone with FSHMD would have tight pectoral muscles, however, all exercise should be planned on an individual basis.
Does massage benefit patients with a neuromuscular condition
Massage techniques can be beneficial in providing relief from muscular pain or tight muscles in conjunction with a physiotherapy massage treatment and is proven to be very effective when used alongside heat therapy.
Why is specialist physiotherapy for people the MD so important
Local clinicians often feel patients can be seen by neurology or rehabilitation physiotherapy teams but these only provide short term intervention which is not always appropriate. MD is a relentless, hereditary, progressive disease that requires ongoing physiotherapy and care delivered by clinicians who specialise in this area. All types of MD present differently and mainstream local NHS services are unable to provide the regular, long term intervention that is required. Those who attend the NMC report that physiotherapy:
- prevents GP appointments and minimises hospital admissions
- prevents falls
- provides timely intervention following injuries and RSI’s
- enables them to maximise their mobility, independence, function and enables that to remain in employment for longer