This blog is in support of Muscular Dystrophy UK’s new report being launched at the House of Lords on the 3rd December regarding access to vital hydrotherapy treatment and highlighting the issues that people with neuromuscular conditions face when trying to access it. I feel that Physiotherapy & Hydrotherapy is an important aspect in the treatment of Duchenne Muscular Dystrophy (DMD). I want to start by explaining how DMD affects muscles and then the beneficial aspects of physio & hydrotherapy.
As you know DMD is a severe muscle wasting disease. Duchenne muscle wastage is due to a mutated Dystrophin gene that prevents the enzyme Dystrophin being present in muscles thus causing muscle degeneration. At an early age the consequences of muscular deterioration are adhesions (fibrous bands) & Oedema (swellings), this causes inflammation, which impedes muscular growth and repair functions so muscles fibrous or ultimately waste away.
I would like to explore the last paragraph in a little more detail.
- Inflammation when triggered in DMD damages muscle, so it is then either substituted by non-functional fibrotic tissue or fat.
- Oedema, adhesions or inflammation are more apparent in younger boys with DMD before muscle tissue has completely wasted away.
- Fibrosis has 2 major consequences for potential treatment of DMD; firstly, it impairs muscle function but also reduces the amount of muscle available for therapy.
- Fibrotic cells (fibrocytes) are necessary during muscle growth or repair as they provide a structure for new tissue but excessive deposits are harmful.
Preventive physiotherapy is crucial at an early age due to the non-reversible nature of fibrosis and chronic tissue contractures (hardening of muscles or tendons) throughout the body. Vigorous exercise can have damaging effects on muscles but moderate exercise can be beneficial in DMD patients to maintain muscle functions especially in hand or fingers.
Physiotherapy is concerned with enabling us to reach our maximum physical potential through: exercises to minimize the development of contractures or deformity, splinting to maintain our range-of-movement using ankle-foot splints (AFOs) or back braces and providing proper seating or postural support to prevent spinal curvature as severe scoliosis is common in DMD.
The physiotherapists at London Hammersmith hospital where I was correctly diagnosed were brilliant in organizing my care. I was provided with a much-needed wheelchair, examined to find out my range of movement and flexibility, given appropriate exercises to maintain movement at home, they used plaster castes to stretch my Achilles tendons and gave me KAFOs (knee-ankle-foot splints) that aided my walking.
Posture and positioning is paramount in DMD to prevent spinal curvature and improve respiratory function later on. Adequate wheelchair provision with a tilt-in-space function and thoracic supports is necessary. Inactivity such as bed rest can speed-up muscle wastage; I was bed-bound for nearly 2 years because I could not find a comfortable NHS wheelchair so I had to go through a charity to purchase the right wheelchair.
I would like to enlighten you on how I viewed physiotherapy in the past. I used to find wearing a back brace uncomfortable, ankle splints were a pain in my neck as it was hard finding shoes that fit over them or constantly being nagged to sit straight. Physiotherapists were not one of my favourite people but I knew what they were suggesting was important. I now encourage taking responsibility of your DMD, the exercises and splinting has now helped my hands to maintain muscle strength, flexibility, and function so it has improved my quality of life now.
Hydrotherapy is also an essential and integral part of DMD treatment, something that is not just a luxury but also a necessity; it should be made available to all patients however there are many problems in gaining access. The issues faced by fellow MDUK ambassadors reported in the hydrotherapy report are regarding hydrotherapy pools not being accessible, lack of pools in the UK or people having to pay large amounts of money to access this treatment.
The water in hydrotherapy pools supports the body weight and the warmth relaxes the muscles, so it provides an environment in which rarely used muscles in your legs can be activated. Personally, it has let me experience walking again but hydrotherapy pools are not easily accessible in Leicester or in adult services. Anecdotally, the hydro pool in Leicester General hospital does not have accessible changing facilities with a hoist, the one in Ashfield School needs to be paid for but there would not be a necessary physiotherapist present.
Treatments such as physiotherapy & hydrotherapy are vital medical interventions but most importantly, it improves quality of life. Quality of life should be regarded as something more highly than money. It seems to me that when you reach adult services they think your disease changes to one that does not deteriorate or need physiotherapy or hydrotherapy interaction. The needs of people with DMD or other neuromuscular conditions do not decrease but increases over time. The report published by MDUK is a brilliant first step to start a dialogue with the people in power to make access to important treatments for adults with neuromuscular conditions easier.