Access to Hydrotherapy & Physiotherapy

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.

 

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Ventilation

I decided to write this blog after speaking at a respiratory physiotherapist conference in September where I provided health professionals with a patient experience on using a ventilator or how these issues fit into or around my life.

I thought that before I start I wanted to express my gratitude for the wonderful care and respect that I’ve been shown by my respiratory consultant Professor Morgan, respiratory physiotherapist Jo Smith and the whole wonderful department. Thank you for improving the quality of my life.

As you know Duchenne Muscular Dystrophy (DMD) is a muscle wasting condition so it has slowly deteriorated my lung function along with my heart but definitely not my brain. Over the years I’ve tried (or Mum insisted) to maintain optimum lung function and (mostly) listen to doctors suggestions. At the age of 12 I had a back operation in order to prevent my scoliosis from crushing my lungs any further by using rods and screws to hold my spine straight. This operation was painful and took a year for me to recover fully but it dramatically increased my lung capacity and I also grew a few more inches. This spinal operation is meant to increase life expectancy for DMD patients by about 10 years so (in my opinion) it is an important but necessary decision to consider having it done.

I was introduced to the Nippy ventilator and the LVR (lung volume recruitment) bag when I was 19 at my annual respiratory appointment as my lung function was beginning to show signs of deterioration. I was initially reluctant to the idea of using the Nippy during the night as I saw no benefit but only an unnecessary nuisance. Funnily enough at the next respiratory appointment I lied to the consultant about using it at night but he found out anyway as the ventilator records the hours it has been used so he told me off. The following issues I had with the ventilator initially appeared to be impossible to cope or deal with:

  • The machine was noisy so I couldn’t fall asleep
  • The mask was uncomfortable around my nose causing red marks
  • I felt claustrophobic with the mask covering my nose
  • It was scary to rely on a machine to breathe for me
  • The mask was challenging to wear due to only being able to sleep on my left side
  • Having to accept tangible evidence of my DMD / symptoms encroaching on my quality of life, my denial over the years had to finally be acknowledged overcome. (This issue was not apparent at the time only now I can look back as an adult)

The respiratory appointments are really vital to managing your DMD, I did not realise how vital the check-ups were until I understood the reasoning behind the nagging insistence to use a Nippy BPAP (Bilevel Positive Air Pressure). Blood gas samples are taken so that CO2 levels can be analyzed as high CO2 levels demonstrates type 2 respiratory failure, other symptoms of gradual failing ventilatory capacity are:

  • Shortness of breath
  • Awareness that extra effort is needed to take breaths
  • Breathless when you lay on your back but not when sitting (Orthopnoea)
  • Daytime dizziness or sleep disturbance
  • Morning headaches and confusion
  • Waking up not feeling refreshed
  • Irritation all through the day
  • Tiredness during the afternoon

The symptoms caused by high CO2 levels in your bloodstream can be assisted by the use of long-term BiPAP ventilation as it fully inflates the lungs thus decreasing high CO2 levels as DMD patients normally shallow breathe.

The time came at age 20 during my A-level year when I was hospitalized for a chest infection that I came to appreciate my nippy ventilator. Without the support of the respiratory department teaching me how to use a cough assist machine, providing chest physio and the realization that I was aspirating on food so I was then given a feeding tube (gastrostomy) which saved my life.

The Nippy ventilator improved my quality of life, I woke up refreshed and at the time able to concentrate on college work. I only saw the improvements once I used night-time ventilation for a few weeks, perseverance is important as initially my chest muscles were stiff from lack of exercise and it was a bit painful. Now it has become an essential part of my daily routine, nighttime ventilation has now become about 3 hours in the daytime, it was difficult to let it intrude into my day but it prolongs my energy to do the things I want to. For example, I wear it at the cinema, the car & at MDUK meetings. My main tip is to use a nasal prong mask rather than a full nose mask, the nasal prongs are less likely to cause pressure sores or red marks, less claustrophobic and more importantly looks much better.

I was also given a LVR (Lung Volume Recruitment) bag, a manual way to exercise your lungs or take deep breaths. I was taught by the physiotherapist to breath-stack using it, it’s a way to hold multiple breaths so you have a boost so you can carry on talking or just enjoying yourself. I wish I used the LVR bag earlier as it is easy to use and effective in improving quality of life and getting you used to respiratory assistance.

Ventilation has helped me medically but also emotionally & mentally. I’ve become more confident to speak because now I can concentrate on the conversation rather then worrying that I’m out of breath. I’ve become a calmer person, less irritable or angry as I have less headaches or I’ve become more aware when I need my ventilator so it is a good idea to take more responsibility of your own DMD.

I was worried that having a ventilator would ruin my life, restrict me, or somehow admitting I needed respiratory help meant I failed but it has improved every aspect of my life so I’ll be open to use it as much as possible. I hope this blog has been helped many DMD guys battling with the idea of ventilators.