Physiotherapy Department by Gill Storey

The builders have now left us and the new extended NMC is completed. During the 9 months of building work patients, carers, physiotherapists and others have worked side by side, and not a single day of treatment has been lost which is quite remarkable.

The physio department has doubled in size and we now have a new specialised adapted gym and an extra treatment room. We have recently employed two new graduate physiotherapists in order to maximise the use of the new department and gym. This means that we will be able to provide more active exercise to a wider range of patients, increase the amount of first assessments we see and also the number of regular appointment slots.

The fundraising team have successfully sourced funding for new disability access equipment which includes:

• A wheelchair accessible rower
• 3 assisted arm and leg cycles
• 2 exercise bikes
• A seated crosstrainer (that you can be hoisted into)
• A standing crosstrainer
• Wii for balance and weight distribution
• Theraband resistance station
• Cable weight station

In the future we are planning to train a physiotherapist to do cardiopulmonary classes at the centre to be able to improve the heart and lung fitness of our patients. The training is accredited and approved by the British Heart Foundation.

Acupuncture by Jonathan Smith

What is Acupuncture?
Acupuncture is a form of therapy in which fine needles are inserted into specific points on the body for therapeutic or preventative reasons. It originated in China over 3,000 years ago and is used in Traditional Chinese Medicine (TCM) to treat a variety of issues from morning sickness to fertility problems. In the Western Medical Model of acupuncture – the type practiced at NMC – acupuncture is used primarily for the treatment of pain.

How does it work?
The Chinese believe acupuncture is effective for the modulating effect it can have on the body’s natural energy, or Qi (Chee); imbalances in the harmony of this energy lead to medical problems and the correction of these imbalances through acupuncture can restore a body to health. Scientific studies have shown that acupuncture works by stimulating the body’s own natural pain-relieving mechanisms, releasing pain relieving hormones into the blood stream and reducing muscle tension. The needles remain in situ for 20-30 minutes and are stimulated to produce an ‘achy, heavy’ sensation known as De Qi.

Is Acupuncture safe?
Acupuncture is generally very safe, especially when performed by a trained physiotherapist. However, as acupuncture is technically an invasive intervention there is the risk of infection; when performed by a trained professional this risk is extremely low. Serious side effects are similarly extremely rare, however some people experience some transient symptoms of sleepiness, light headedness etc. during or after treatment.

Does acupuncture work in MD?
Yes! Acupuncture has been an available treatment at NMC through different professionals for a few years and has been effective in the treatment of a variety of issues related to pain. It is especially effective at reducing muscular pain related to chronic tension which is very commonly seen in MD and has the side effects of improving sleep and movement following treatment. Acupuncture can also be used alongside other therapies such as stretching and exercise to improve outcomes and is especially useful in the treatment of multiple sites of pain at the same time.

Jonathan Smith MRes MCSP, Clinical Specialist Physiotherapist, Neuromuscular Centre T: 01606 861799 E: jonny.smith@nmcentre.com

Scary Moments... Cough Assist Machine to the rescue! by Andrea Duckworth

I have been asked to share a recent experience with you. In December, the week leading up to Christmas, I was unwell with a virus. My sinuses seemed permanently blocked and I was constantly blowing my nose.

I felt at times I couldn’t breathe properly due to the congestion. I took the usual remedies; paracetamol, Nurofen, Vicks and also a decongestant.

In addition I increased the use of my cough assist machine, sometimes using it 10 times a day to try and clear the congestion. On the Sunday before Christmas I had a very scary moment. Despite using the cough assist machine, I couldn’t clear the catarrh from my throat. It felt trapped and was affecting my ability to breathe. I could feel myself becoming anxious and very hot. I took off some of my clothes, opened the window for some air and then went back on my cough assist. My husband and daughter came to try and help but they felt helpless and my husband asked if I he needed to ring the hospital. I said that if I couldn’t clear it then yes. I kept persevering with the cough assist machine and thankfully I managed a good cough and the catarrh did eventually clear. I was very frightened though and it made me feel particularly vulnerable.

The next day I made a doctors’ appointment and also rang the NMC Physio Team for advice and reassurance. Due to my vulnerability, I was put on a course of antibiotics. Whilst they did not shorten the length of time that I had the virus, they did stop it from getting any worse and turning into something nasty such as pneumonia.

I consider myself to be healthy, very rarely ill and things never generally phase me. However, on this occasion I was scared. I am so grateful that I have a cough assist machine at home. Through using it on a daily and regular basis I was not phased by using it more frequently in an acute situation. Had I not had a machine at home, I would have been admitted to hospital.

I would say to anyone who has respiratory problems that a cough assist machine really can help your respiratory well being. If you think you could benefit from using a Cough Assist Machine, please speak to your Consultant and / or seek advice from The Physio Team at NMC.

Past editions of One Voice are a treasure-trove of useful information. They are available on the NMC website, but in addition, we have set up a website onevoicearticles.blogspot.co.uk. We will post articles on this site that appear in One Voice, and we will try to add as many past articles as we can. We hope that it will make it easier to search for and find topics that have been covered in previous editions.

Research at the NMC

An article entitled “Gastrocnemius medialis muscle architecture and physiological cross sectional area in adult males with Duchenne muscular dystrophy” (published in the Journal for Musculoskeletal and Neuronal Interactions) is the first publication of the collaboration between Manchester Metropolitan University’s (MMU) Institute of Performance Research and NMC. It is based upon data collected in the summer of 2014 and is the first investigation of muscle size in adults with Duchenne MD that has been published to date. It demonstrated that the DMD participants had significantly smaller muscle cross-sectional area compared with unaffected adults. 

This data is unique – it has not been previously published in an adult population. Much of the current literature describing populations of people with MD has been undertaken in paediatric individuals and there is a lack of quality research into the effects of physiotherapy in particular. NMC is uniquely placed to contribute to this field of research. 

NMC provides on-going physiotherapy to over 200 people, with many more attending for specialist assessment. Presently, this therapy is largely guided by client feedback and collaborative goal-setting, in addition to decades of experience, rather than hard evidence. Health professionals in other settings do not have access to the same level of expertise; they need data highlighting best practice.

Already there is further work being planned and undertaken at NMC. Publication of another article describing bone mineral density and physical activity in MD individuals is due hopefully in the next few months. A fulltime PhD student from MMU – Matt Jacques - is due to complete data collection for a study describing resting calorie use in MD individuals by the end of the year. Matt will also be collecting data for his PhD project studying the immediate effects of physiotherapy in MD individuals.

In addition to this, Michael Andrews – a Master’s student at Chester University – has completed data collection for his study into exercise in Duchenne MD.  The most critical component in the success of this publication is the NMC’s service users and their support network – to everyone who has participated in the recent projects I would like to extend heartfelt thanks. There is presently a real opportunity for NMC to be part of the production of significant pieces of research in an area demanding investigation and that is cause for tremendous excitement. Direct link: http://www.ismni. org/jmni/pdf/60/05MORSE.pdf

Hydrotherapy - Karen Pritchard

Hydrotherapy is a programme using the properties of water to improve function, carried out by Physiotherapists in a purpose built and correctly heated and equipped hydrotherapy pool.  We are lucky to benefit from this facility here at the Neuromuscular Centre as such, for we have the use of the hydrotherapy pool at the nearby Hebden Green School.  Hydrotherapy is good for us because it: 

• Reduces muscle tightness and relieves pain
• Rehabilitates injured muscles and joints by increasing blood flow and speeding up the healing process
• Provides a safe environment in which to mobilise and exercise people with MD • Provides relaxation and stress relief.

Another important benefit to hydrotherapy is that we are gaining social interaction with others, and also psychological well being. Social isolation can be a problem if you are not getting out of the house and meeting people. It can be good to talk with others that are more often than not are living with the same issues as you!

It is only recently I have really embraced hydrotherapy. It seemed to be a chore for me and hard work getting undressed/dressed but the benefits far outweigh this. I feel relaxed in the pool. I’m able to switch off from things that are weighing on my mind. I also have  exercises that I can get on and do. I feel a real sense of achievement after my session, and I sleep much better after it too! 

If you have not tried out our hydrotherapy sessions why not speak to one of our team of physiotherapists. They can discuss what benefits hydrotherapy will have for you. Also, why not try your local pool. Contact them and find out what disabled facilities they have to offer. Your local pool will probably not be as warm as the pool here at Hebden Green, but I find it relieves my stress just being in the water. I just don’t stay in the pool as long! 

Did you know...  The increased blood flow and circulation of white blood cells around the body allows lymph — an immune system fluid (that helps get rid of unwanted materials from the body) to be moved through the body more efficiently and therefore strengthens the immune system to fight colds and illnesses.

Live Life – Marc Chapman

I have written this article to show that life with a disability isn’t all doom and gloom! I believe we are the same and can do the same as anyone. I’m proof of that and I have never let anything get in my way preventing me from doing something.

I used to go to Hebden Green School (next to the NMC). When I was doing my GCSE’s, I didn’t get the results that I wanted in Maths and English and ended up with a D in English and an E in Maths when I needed a C or above. I thought this would ruin my chances of getting to college.
However, whilst at school I started coming to the NMC and studied Graphic Design which I very much enjoyed. I achieved an NCFE Level 1.

Inspired by my success in Graphic Design I moved on to college and studied BTEC Level 3 in Moving Image (Film and TV), where I achieved a Distinction. I also continued with functional skills in Maths and English.

This just proves that if you don’t get the grades at school it isn’t always the end of the world. There’s nearly always a way round it and you can end up being successful.

During my time at college I still carried on coming to NMC for physiotherapy. It kept me fit and healthy and was a huge boost to my well-being.

Although my next step was to pursue a HNC course at college, the course did not run, due to being under-subscribed. So I took a gap year. I have kept myself busy. I approached Matthew at NMC who was able to offer me some work experience with the Design and Print team on Wednesdays. I have loved every minute of it and never looked back. The camaraderie is second to none.

I have regular physiotherapy and I have started doing a web design course in training which I have also really enjoyed.

Coming to the NMC is a big part of my life and it provides me with the opportunity to socialise with many like-minded people. If I have any problems with my ventilator or wheelchair, someone in the building will have a solution, which puts your mind ease. I have made some good friends along the way, so I would definitely recommend the NMC to anyone with muscular dystrophy!

Cough Assist Machine, A Patient’s Perspective – Andrea Duckworth

It was whilst at a routine home appointment to replace my ventilator (which I use at night), that the nurse explained that she felt my breathing seemed slightly laboured and I seemed a bit hoarse.

She suggested a few things, one of which was a Cough Assist machine. A few weeks later she came back to visit, armed with the Cough Assist Machine and the Respiratory Physiotherapist.

They both explained how the machine worked and took me through it step by step. Firstly they had a go just to illustrate how it worked. Then it was my turn! It took a bit of getting used to but they adjusted the settings until I felt comfortable with them. The pressure is quite forceful but the key is to get into a good rhythm.

It took me a little while to feel really comfortable using it. The idea is that I use the Cough Assist machine prophylactically (as a preventative measure) to keep everything clear and flowing smoothly, rather than waiting to get a bad cough or cold and then really needing to use it, but actually feeling to tired and weak to use it. It is quite a forced pressure but one that you can get used to.

I try and use the Cough Assist morning and night so that once I get out of bed in the morning I am able to clear any secretions that have developed overnight, and again before I get into bed in the evening so that I clear any secretions before I lie down at night.

It is another gadget to store but it’s just under my bed and I just pull it out to use it. I have really found that this has helped me – it makes my throat feel clearer, my breathing seems better and I feel more alert. I feel I am doing as much as I can to help my breathing be as effective as possible within the disease limitations. I hope that I do not pick up coughs and colds but I am reassured that my Cough Assist machine will help that bit more if I do get one!

Cough Assist Machine – A Clinical Perspective Jonny Smith

Cough assist (or Mechanical Insufflation-Exsufflation) is a chest clearance device which uses negative air pressure to simulate a functional human cough. The machine works by delivering a preset 'breath in', or inhalation, which fully inflates the lungs and moves air behind secretions. It then rapidly switches to a preset 'breath out', or exhalation, which draws secretions mouthwards to be cleared from the chest. This is typically performed through a mouthpiece or mask and the newer machines have various settings to tailor the treatment to the individuals.

Chest infections can be extremely dangerous, particularly if you are unable to clear your chest effectively. Regular use of a Cough assist prevents accumulations of secretions within the chest, which in turn removes favourable conditions for bacteria to multiply and helps to prevent chest infections. In addition, in the event of a chest infection, the cough assist removes infected secretions to clear the airways and improves breathing - just like a functional human cough!

Individuals may require a cough assist when they have weak respiratory muscles - those such as the diaphragm, muscles of the ribs and abdominals - and can no longer effectively clear their chests independently. The guidance for individual need of a cough assist is contained within the British Thoracic Society guidance on Neuromuscular Conditions, which was published in 2012. Cough assist machines are becoming much more widely used because of the advantages they confer over other chest clearance options (such as suction or manual-assisted coughing) with relatively few drawbacks. The most effective method of using a cough assist device is to use it every day, even when you are feeling well, to fully inflate the lungs, keep secretions moving and prevent issues such as chest infections from ever occurring.

If you feel your cough is weak, or has weakened recently, to the point where you are unable to effectively clear your chest, you should alert your physiotherapist or specialist clinician as you may be in need of respiratory support. Even if you feel capable of clearing your chest when you are not unwell, the effects of infection and repeated coughing can leave you fatigued and adversely affect your cough strength. As always, prevention is better than cure! And it is better to have &
rarely need, than rarely need & not have!

A Parents Perspective – Sophie Hawes

Millie has Spinal Muscular Atrophy and during secondary school received 'brief' physio sessions every two weeks or so. These sessions were too short for anything really worthwhile to be achieved, and it became deeply frustrating for me as her Mum knowing that she needed more. 

When she was 16, Millie was lucky enough to be referred to the NeuroMuscular Centre. She was a little apprehensive to begin with as the NMC is an adult facility and she was so young, but her fears were soon allayed as the welcome was so warm from everyone. 

Each week she attends either a Physio session of 1.5-2hrs or a hydrotherapy session of 1hr -1.5 hr. Millie has gained so much from her time at the NMC, not only in maintaining her physical strength ( with those fabulous lengthy sessions) but also gleaning so much new invaluable information from the physios or other 'customers'. This has been particularly helpful with regard to her incredibly tough application for social care funding to enable her to study Law at Durham University. 

The NMC were able to introduce Millie to other like-minded people in a similar situation to herself who were able to share their experiences and she could learn from them. It was reassuring to know others had succeeded in achieving their goals and this increased Millie's own confidence. Millie feels totally at ease when I leave her in the capable hands of Jonny, Chloe, Paul or Gill and I know they have a lot of fun during the sessions - lots of healthy banter! 

All the knowledge, enthusiasm and commitment the physios have given Millie has been invaluable and we are both incredibly grateful.