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
Different conditions, different backgrounds and different experiences.
Monday 30 November 2015
Do You Want To Be A Guinea Pig - Participating In Research
It quickly became apparent to me at the Neuromuscular Centre that their work encompasses numerous conditions and most of them are rare. There are many gaps in the understanding of musclewasting conditions and a lack of treatments. Research is essential for understanding the causes, trialing things that can have a benefit and ultimately in finding effective treatments. Progress often happens in tiny increments and we don’t know whether or not effective treatments will come in our lifetime. Many that I have spoken to are interested in our conditions and for a range of reasons would like to be involved in research projects.
I recently met with David Tucker who is taking part in a drugs trial to look at a possible treatment for the condition he has, Sporadic Inclusion Body Myositis. Research is not always drugs trials, and there are many observational studies.
How did David get onto the research programme? His story began when David moved to Salford Hospital, as he felt that his previous clinic did not have the expertise or knowledge of his condition. On his first visit he was asked if he would participate in a new research project. He readily agreed and within a few weeks he was back to start the process. For many people it is something that they bring up with their Consultant who should be able to link them into current and active research projects.
What was the process? The initial screening determined that David was a suitable candidate for the research. There were a range of criteria and tests, such as a DEXA “dual energy X-ray absorptiometry” scan used to measure bone density, which could have ruled him out at this stage. David matched the qualifying criteria on all counts.
Next came the baseline tests to measure his muscle strength, these have been repeated periodically through the study and measure any changes in David’s strength.
In David’s trial the drug is given as an infusion. Every few weeks David has to travel to Salford for two consecutive days, a round trip of over 160 miles. The first day he arrives and is simply weighed before leaving. He explained that the reason is that the pharmacists take a day to make up the infusion specifically to his weight. While frustrating, David accepts this as essential to ensure the integrity of the study.
This is a major international study and Novartis, the drugs company, will be spending many millions on this research. They willingly pay all out-ofpocket expenses for David and a carer, including travel, food and accommodation. For the first infusion David and his wife stayed in a hotel, however he now prefers to travel daily.
Was the research a positive experience? David had just had his penultimate infusion but he hasn’t noticed any difference in his abilities throughout the study. He isn’t discouraged about this as he explained that he doesn’t know whether he is getting the drug or not. There are four groups of participants, three are receiving infusions in different doses and the last is a control group receiving just a placebo. No one knows, other than those doing the analysis, which group they are in, including the medical staff. This secrecy is so strictly controlled that two different pharmacists are involved in the preparation and the mixing of the infusion so that even they can have no knowledge of the end dose.
I asked what motivated David to be involved in the research. “ I want to help in any way I can, in the hope that it will give faith and be of help to future sufferers.”
Following the end of the trial all the participants will continue to receive infusions at the same dose until the results of the research are confirmed and if the drug is licensed . It is hoped that it will be as soon as next year. They will then receive infusions with the drug at the optimum dose, so hopefully all could benefit directly from participating in the study.
This study has required an enormous time commitment for David, but he is very positive about the experience “Although I think I am on the Placebo I am finding it a worthwhile and very interesting experience being on the Trial and obviously hope that it will benefit myself also.”
Going to University
My first year at the University of Southampton has been the best of my life so far. The step to university from school or college is a big one because it’s often your first time living away from home and the learning style is totally different to school with a much greater emphasis on independent learning.
University life is about a lot more than the course too, I’d say that being part of societies is definitely as important as your course itself because they’re a great way to meet others and try new skills. I’m lucky enough to be both studying Aerospace Engineering at the University of Southampton and also to be Factual Executive for SUSUtv, the University’s student TV station. This role has seen me produce a documentary on the Spitfire which provided me with the opportunity to interview a real Spitfire pilot, something which I definitely did not think I would be doing when I started University! I’m also fortunate enough to have been elected as a Course Representative for my year group too which involves representing the views of students to Faculty staff. Now the reason for me mentioning these experiences of mine is that, being both Factual Executive and Course Representative, communicating to groups of people is absolutely crucial, whether that be a video production team or the year group on the course. Without being in Facebook groups I doubt that I’d be able to do this as they are such an effective means of communication. They also provide a wonderful open environment to discuss ideas as well as meaning that you are always contactable.
So how is this relevant to the NMC? During this summer 2015 I was fortunate enough to have the opportunity to volunteer here and part of that included setting up a Facebook group in order to provide an open forum for discussion on the topic of moving to University. Having had such a great experience at University this year I do truly feel that other people who have muscular dystrophy such as myself should have the opportunity to attend University. This is the purpose behind the Facebook
group, allowing everyone to make a well informed choice about their future. The group is open to everyone at the NMC, whether you’re looking to go to University, are currently there or have finished your degree it’s the ideal place to find out about all aspects of University life or help those looking to go. The group is only visible to members so it is a totally secure place for an open and honest discussion.
Of course the most important aspect of any group is the people in it so if you are looking to go to University, are there or have been in the past, this is definitely the group for you. To join the group you need to be registered on Facebook and search for “NeuroMuscular Centre University Discussion Group”. If the group doesn’t come up go to the top menu and click on the MORE tab, then click the GROUPS tab. The link has a button where you can request to join.
University life is about a lot more than the course too, I’d say that being part of societies is definitely as important as your course itself because they’re a great way to meet others and try new skills. I’m lucky enough to be both studying Aerospace Engineering at the University of Southampton and also to be Factual Executive for SUSUtv, the University’s student TV station. This role has seen me produce a documentary on the Spitfire which provided me with the opportunity to interview a real Spitfire pilot, something which I definitely did not think I would be doing when I started University! I’m also fortunate enough to have been elected as a Course Representative for my year group too which involves representing the views of students to Faculty staff. Now the reason for me mentioning these experiences of mine is that, being both Factual Executive and Course Representative, communicating to groups of people is absolutely crucial, whether that be a video production team or the year group on the course. Without being in Facebook groups I doubt that I’d be able to do this as they are such an effective means of communication. They also provide a wonderful open environment to discuss ideas as well as meaning that you are always contactable.
So how is this relevant to the NMC? During this summer 2015 I was fortunate enough to have the opportunity to volunteer here and part of that included setting up a Facebook group in order to provide an open forum for discussion on the topic of moving to University. Having had such a great experience at University this year I do truly feel that other people who have muscular dystrophy such as myself should have the opportunity to attend University. This is the purpose behind the Facebook
group, allowing everyone to make a well informed choice about their future. The group is open to everyone at the NMC, whether you’re looking to go to University, are currently there or have finished your degree it’s the ideal place to find out about all aspects of University life or help those looking to go. The group is only visible to members so it is a totally secure place for an open and honest discussion.
Of course the most important aspect of any group is the people in it so if you are looking to go to University, are there or have been in the past, this is definitely the group for you. To join the group you need to be registered on Facebook and search for “NeuroMuscular Centre University Discussion Group”. If the group doesn’t come up go to the top menu and click on the MORE tab, then click the GROUPS tab. The link has a button where you can request to join.
Thank You Sue - We Will Miss You
Word flies around the NMC...’What, leaving us! It must be just a rumour!’’. Sue laughs. “Well” she says “I am reaching that certain age now, and can’t be here forever! “ Sue’s role within NMC has changed tremendously over the years. She has managed to bring a whole new meaning to ‘support worker’, not just supporting people with neuromuscular conditions, but also their carers. She has the ability to listen and bring out the needs of a person in order to provide appropriate assistance, so what does she attribute this to? “ Instinct”’ she says. “I think some instincts are natural, but I think years of working at the NMC gives experience to understand what people and carers are coping with”. She has been their point of contact, bringing together help from everyone in the NMC community. “ I couldn’t do this alone.”
Sue’s great ability is to be able to think outside the box, and one of her proudest achievements is that of the Retreat. “ When people come to the NMC for the first time, they are often very worried, having been given a diagnosis which it is difficult to learn anything about. They also have to deal with a vast array of emotions - not just their own but also their families. They need somewhere to off-load, away from the Centre. It is good to have a quiet place, with beautiful grounds surrounding it. Just to sit back, take a deep breath and so face the world again.”
“I’m a very practical person, and realise that people need practical things in place in order to move forwards. This ranges from equipment and adaptations to benefits, work and volunteering, using skills they already have or learning new ones. Finding these things can be very difficult but when we work together as we have in the shed club then practical skills can be used with others who have been on the same journey.”
“The hardest part of the job?” Sue has no hesitation. “It’s losing friends and colleagues. This has a ripple effect not only on colleagues but also their families. I have to support people in a professional way but also deal with my own feelings. The emotional toll is difficult but at the Centre everyone is willing to give a bit of themselves to support others and on balance we have more laughs and positive experiences.”
So what does the future now hold for Sue? “ Well’ I’ve just moved house, so there are things to do there,” she says, “and I plan to spend more time with my family.......there’s my Mum, and my sister and of course there’s Mike and our children and grandchildren. I love art and used to print and embroider pictures in the past so it will be lovely to take this up again. I also love to travel - I’m not a beach person, but we have lots of friends in various countries around the world who we are planning to visit. I am also hoping that we will have time for ourselves”. Hm, lots of sitting around then!
Final words on the Centre? “I realised it would be difficult whenever I chose to retire, but it was important that support services would continue with a good cross-over. Denise has settled well and we have until Christmas for her to further settle. I have loved my time here and can’t imagine not working at the NMC, but I’ve not moved too far away and so will keep in touch. I’ve met some amazing people - people with this condition are some of the strongest people I know, getting on with life and so motivating me”.
Sue’s great ability is to be able to think outside the box, and one of her proudest achievements is that of the Retreat. “ When people come to the NMC for the first time, they are often very worried, having been given a diagnosis which it is difficult to learn anything about. They also have to deal with a vast array of emotions - not just their own but also their families. They need somewhere to off-load, away from the Centre. It is good to have a quiet place, with beautiful grounds surrounding it. Just to sit back, take a deep breath and so face the world again.”
“I’m a very practical person, and realise that people need practical things in place in order to move forwards. This ranges from equipment and adaptations to benefits, work and volunteering, using skills they already have or learning new ones. Finding these things can be very difficult but when we work together as we have in the shed club then practical skills can be used with others who have been on the same journey.”
“The hardest part of the job?” Sue has no hesitation. “It’s losing friends and colleagues. This has a ripple effect not only on colleagues but also their families. I have to support people in a professional way but also deal with my own feelings. The emotional toll is difficult but at the Centre everyone is willing to give a bit of themselves to support others and on balance we have more laughs and positive experiences.”
So what does the future now hold for Sue? “ Well’ I’ve just moved house, so there are things to do there,” she says, “and I plan to spend more time with my family.......there’s my Mum, and my sister and of course there’s Mike and our children and grandchildren. I love art and used to print and embroider pictures in the past so it will be lovely to take this up again. I also love to travel - I’m not a beach person, but we have lots of friends in various countries around the world who we are planning to visit. I am also hoping that we will have time for ourselves”. Hm, lots of sitting around then!
Final words on the Centre? “I realised it would be difficult whenever I chose to retire, but it was important that support services would continue with a good cross-over. Denise has settled well and we have until Christmas for her to further settle. I have loved my time here and can’t imagine not working at the NMC, but I’ve not moved too far away and so will keep in touch. I’ve met some amazing people - people with this condition are some of the strongest people I know, getting on with life and so motivating me”.
Finding Accessible Toilets
There are currently over 750 toilets access the UK listed on the site and they are constantly adding more sites. The database includes information about the type of location, if there are restrictions on who can use the toilet, the opening hour as well as details about the room and the equipment. The site can also direct you for hiring a mobile toilet facility for events.
The database includes information about the type of location, if there are restrictions on who can use the toilet, the opening hours the room and the equipment.
www.changing-places.org
Want to kick started your career in Graphic design?
Our main goal is to provide a unique service that is an alternative to a main stream college environment. Students receive full care and one-to-one training in a fully adapted training suite. We encourage students to reach their full potential and they are able to work at their own pace. Learning is very much forced around the individuals needs and requirements. We are proud to offer our students a warm and friendly place to study. All courses are completely free and no previous experience or qualifications are required for any of the courses. Participants should have a general interest in graphic design and design software programs.
Taster sessions for any of the courses are always offered to see whether it really meets your needs and requirements. When you come for assessment we will work with you to identify the appropriate start date, duration, level of study and content which will help you achieve your personal goals. Study At Home The Neuromuscular Centre (NMC) also offers a home study programme. The NMC is looking to recruit graphic design students with muscular dystrophy who have the enthusiasm and motivation to Study at home. We offer NFCE Level 1 & 2 in Graphic Design as a home study option. Our tutors are available for online support three days a week and use the latest software to ensure all home study students are fully supported throughout their course.
What’s Next
Once students gain a national recognized qualification it can lead to many new and exciting opportunities, such as:
- Progressing onto another course to gain an even higher level qualification at the NMC or at college or university.
- Gaining employment in a Graphic Design company.
- Gaining employment in NMC’s own NMC Design+Print - our very own in house commercial graphic design and print company.
- Freelance Designing - maybe working from home.
If you would like more information please contact Kay on 01606 860911or e-mail kay.briggs@nmcentre.com
Maintaining Safe Mobility through Regular Review
The Mobility Service aims to support individuals to return to driving or to continue driving in safety and will help you identify the most suitable type of vehicle controls and vehicle access systems for your needs.
If you travel as a passenger and need to remain in your wheelchair The Wales Mobility and Driving Assessment Service will be able to offer advice and guidance regarding the equipment and vehicle features essential to your needs.
The Wales Mobility & Driving Assessment Service is a registered charity and receives additional funding from The Welsh Government. The Charity operates across Wales, with The North Wales Centre being based at Glan Clwyd Hospital in Denbighshire. The team at The Wales Mobility & Driving Assessment Service have extensive experience of helping drivers and passengers remain safely mobile and will be able to help you achieve a safe long-term mobility solution.
If you experience a progressively changing medical condition it is essential to undertake regular review of your driving to ensure you have the most suitable form of vehicle controls for your safe and comfortable driving.
During a driving assessment we can review your current physical abilities as a driver and explore the wide range of vehicle control options available to you to ensure you have the most appropriate, easy to use and safe driving controls available.
With advances in vehicle technology it is becoming increasingly possible to remain safely driving, despite changes in strength levels or a reduction in your range of physical movement.
The team at The Wales Mobility & Driving Assessment Service will discuss all options available to you and then offer you an in-vehicle assessment using our extensive range of adapted vehicles.
During assessment we will help you to also consider your access needs into the vehicle and will explore the most suitable option to allow you to enter the vehicle and to stow your wheelchair, if applicable.
If you travel as a passenger we can help you consider the safest and easiest method of entering the vehicle, either whilst transferring onto a passenger seat or by remaining in your wheelchair whilst travelling. The Mobility Service has a wide range of equipment and vehicle types that can reduce or eliminate the physical effort involved during transfer into a vehicle.
The Mobility Service also provides a free information and advice service and can advise on a range of issues including DVLA, Motability, vehicle funding, driver tuition, vehicle adaptation and much more.
So, if you experience progressive changes to your physical ability we can help you monitor these changes and find solutions that allow you to continue driving safely and in comfort.
The Wales Mobility & Driving Assessment Service can be contacted on: Tel: 01745 584858 E mail at: mobilityinfo@btconnect.com. Further information is also available at:www.wmdas.co.uk In the next edition of One Voice Sanjay Vaja reports on his experience of the reassessment
Mindfullness
Hi everyone. My name is Jonathan Brough and I’ve been lucky enough to have been supported by the NMC for quite a few years now. Over the years there were times when I struggled to come to terms with things, and worried about what the future held for myself and my family. To a degree I experienced a level of anxiety and depression connected to this. As a registered nurse, about five years ago I was introduced to mindfulness. Mindfulness is a life skill which involves paying attention to what is occurring in the present moment, instead of worrying or stressing about something that’s happened before or what may happen. It engages all our senses as we become aware of our body, emotions, thoughts and our environment. For the last 5 years I have continued to practice mindfulness with Breathworks, which has developed a mindfulness programme helping people to better manage their health conditions, pain, and stress. I have recently completed my training to become an Accredited Breathworks trainer. I know how much mindfulness has helped me to come to terms with my condition, and I know that it can help others like me. I’ve discussed the possibility of me providing some mindfulness training for the NMC. This could be for those who are being supported by the NMC regarding their own condition, their carers, or staff. To give people a better understanding of what mindfulness is I’m hoping to run some mindfulness taster sessions at the NMC. So that it can be properly planned I need to have an idea of how many people would be interested. If you would like to take part in a two hour session in the new year, please contact me at jonathanwithbreathworks@ gmail.com to express your interest. If you want to know more about Breathworks mindfulness training please look at their website at http://www.breathworksmindfulness.org.uk/
Winter Vaccinations
It seems to have come around so quickly, but it is that time of year again when we need to start thinking about the winter flu jab.
It is important to have ourselves vaccinated as we are more susceptible to catching the flu and to its repercussions.
It is also important for people who care for us to consider the jab too. This protects us and them from possible infection. The flu vaccine is available free on the NHS for:
It is important to have ourselves vaccinated as we are more susceptible to catching the flu and to its repercussions.
It is also important for people who care for us to consider the jab too. This protects us and them from possible infection. The flu vaccine is available free on the NHS for:
- Anyone who is over the age of 65
- Pregnant women
- Anyone who is overweight (with a body mass index over 40)
- Children and adults with and underlying health condition (particularly long term heart or lung disease) Children and adults with weakened immune systems
- An annual flu vaccine nasal spray is also now offered to healthy children aged two, three and four years old, and to children in school years one and two.
The best time of year to have the vaccine is in the autumn, between September and early November. There is no actual deadline but, where possible, you should be vaccinated before flu starts circulating in the community.
Serious side effects of the flu vaccine are very rare. You may have a slight temperature and aching muscles for a few days after having the jab, and your arm may be a bit sore where you were injected. The pneumococcal vaccine A pneumococcal infection can affect anyone. However, some people need the pneumococcal vaccination (pneumo jab) because they are at higher risk of complications. These include:
- All children under the age of two
- Adults aged 65 or over
- Children and adults with certain long-term health conditions, such as a serious
heart or kidney condition - This vaccine is not given annually, like the flu jab
- People with a long-term health condition may need just a single one-off pneumococcal vaccination or five-yearly vaccination depending on their underlying health problem
Some flu facts:
- The flu jab can’t give you flu
- The flu jab is perfectly safe
- The flu virus changes, so you need a flu jab every year
- If you are pregnant, the flu jab doesn’t harm your unborn baby. In fact it can protect your baby from flu for the first few months of life
- The flu jab also protects against swine flu
- Washing and drying your hands properly can play an important part in preventing the spread of infection. Disposing of used tissues properly can also help prevent it spreading.
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.
Aromatherapy at the Neuromuscular Centre - Beverley Langley
Hello! My name is Beverley and I run the Complementary Therapy Clinic at the NMC. One of the therapies I practice is Aromatherapy. Aromatherapy can be traced back to 3,500 years B.C.. At that time it was linked to aromatic medicine which was associated with religion and magic. Ancient Egyptians burnt incense from woods, herbs and spices to honour their Gods and used Frankincense, Myrrh, Cinnamon, Cedarwood and Juniperberry to preserve the bodies of their Royalty in the afterlife.
Modern Aromatherapy uses natural oils extracted from various parts of a plant to enhance physical and emotional wellbeing. The oils may be extracted by distillation or cold pressing. Essential oils consist of tiny aromatic molecules that are absorbed via the skin thereby entering the bloodstream and being carried around the body to deliver their beneficial effects. When inhaling the aroma, a signal is sent to the limbic system of the brain which is the centre of emotions and memory and is directly connected to parts of the brain that control heart rate, blood pressure, breathing, stress, and hormone balance.
Essential oils are concentrated and must always be diluted by a qualified Aromatherapist into a carrier oil before being applied to the skin. Massage is most commonly associated with aromatherapy, but there are a variety of other methods that essential oils can be used including diluting the oils and adding them to the bath, by steam inhalation and diffusers.
Here at the NMC, I use aromatherapy for a variety of applications including pain relief, stress relief, mood enhancement and cognitive function. Each essential oil has its own properties that may give health benefits. Some oils are thought to have an anti inflammatory effect which may help with arthritis and muscular pain.
The therapeutic effects of essential oils together with massage can help relax and calm you and boost your wellbeing. I choose the oils that I feel may help manage your symptoms and help you the most. I also do a full consultation at your first visit to ensure there is no medical reason why you should not have aromatherapy. It is important not to use oils instead of taking prescribed medicines or seeing your G.P.
I am happy to see service users, carers and staff by appointment on Wednesdays and Thursdays. Please feel free to have a chat with me when I am not with a client or contact me on 07756853089.
Modern Aromatherapy uses natural oils extracted from various parts of a plant to enhance physical and emotional wellbeing. The oils may be extracted by distillation or cold pressing. Essential oils consist of tiny aromatic molecules that are absorbed via the skin thereby entering the bloodstream and being carried around the body to deliver their beneficial effects. When inhaling the aroma, a signal is sent to the limbic system of the brain which is the centre of emotions and memory and is directly connected to parts of the brain that control heart rate, blood pressure, breathing, stress, and hormone balance.
Essential oils are concentrated and must always be diluted by a qualified Aromatherapist into a carrier oil before being applied to the skin. Massage is most commonly associated with aromatherapy, but there are a variety of other methods that essential oils can be used including diluting the oils and adding them to the bath, by steam inhalation and diffusers.
Here at the NMC, I use aromatherapy for a variety of applications including pain relief, stress relief, mood enhancement and cognitive function. Each essential oil has its own properties that may give health benefits. Some oils are thought to have an anti inflammatory effect which may help with arthritis and muscular pain.
The therapeutic effects of essential oils together with massage can help relax and calm you and boost your wellbeing. I choose the oils that I feel may help manage your symptoms and help you the most. I also do a full consultation at your first visit to ensure there is no medical reason why you should not have aromatherapy. It is important not to use oils instead of taking prescribed medicines or seeing your G.P.
I am happy to see service users, carers and staff by appointment on Wednesdays and Thursdays. Please feel free to have a chat with me when I am not with a client or contact me on 07756853089.
Downhill Adventures - James Taubman Sit ski
During the summer at the Neuromuscular Centre, Disability Snow Sports came to give a demonstration of the “Sit Ski” and to give our clients here the opportunity to try it out at the centre. James was enthusiastic, and gave it a go! A few other people in our community also tried it out and enjoyed the very positive and informative demonstration.
James wanted to take this one step further, and a week later he had booked himself at the “Chill Factore” in Manchester to make his dream a reality! James tells me he had very little time to dwell on it which he felt was for the best!
James wrapped up warm in plenty of layers and went with his career to Chill Factore - His carer also went on the slope. The experience was a one hour session - up and down the slope roughly about eight to ten goes.
James was very confident as the staff at the Chill Factore made him feel comfortable and reassured him that his safety was paramount.
James was attached to a lift to take him to the top of the slope. He tell me he was nervous the first time but after this he was buzzing and was ready to go again ! James also had a guide behind him doing all the steering and manoeuvring. He soon got over his fear! He tells me It was an unforgettable experience.
James would highly recommend trying out the “Sit Skiing” at Chill Factore. He found it something out of the ordinary. He was also pleased that he could participate in this sport and take on the challenge and that his disability was not a barrier to him taking part in such an activity. James would like to take on a mountain and a skiing trip in the future! Go James - we look forward to hearing all about your next adventure!
James wanted to take this one step further, and a week later he had booked himself at the “Chill Factore” in Manchester to make his dream a reality! James tells me he had very little time to dwell on it which he felt was for the best!
James wrapped up warm in plenty of layers and went with his career to Chill Factore - His carer also went on the slope. The experience was a one hour session - up and down the slope roughly about eight to ten goes.
James was very confident as the staff at the Chill Factore made him feel comfortable and reassured him that his safety was paramount.
James was attached to a lift to take him to the top of the slope. He tell me he was nervous the first time but after this he was buzzing and was ready to go again ! James also had a guide behind him doing all the steering and manoeuvring. He soon got over his fear! He tells me It was an unforgettable experience.
James would highly recommend trying out the “Sit Skiing” at Chill Factore. He found it something out of the ordinary. He was also pleased that he could participate in this sport and take on the challenge and that his disability was not a barrier to him taking part in such an activity. James would like to take on a mountain and a skiing trip in the future! Go James - we look forward to hearing all about your next adventure!
Steve Bebe on the Radio
Many people have said over the years that you should be on the radio. How did you get the opportunity to be on the radio? I was asked by our Community Fundraiser Amy Swatkins to join her on the “Charities Today” show on RedShift Radio to talk about the NMC, and after the show I asked the presenter about how you go about becoming a DJ on RedShift. She told me to email Liz Southall who runs the radio station. So I emailed Liz and we arranged a meeting at the station to discuss what type of show I would like to do and straight away she offered me a time slot - which was fantastic. So I went back the following week for my training which including showing me how everything works and then I went on air for a short 20 minute trial, firstly talking to her on air and then leaving me on my own for about 10 minutes to play a couple of songs and do a few links, and then after that I was told i could start my own show!
What does it involve and what do you actually do? I present a community news and music show called ‘What’s Happening with Steve Bebe’ which initially started on a Monday afternoon between 2 and 3 pm before moving to a new slot. In my first few shows I spoke about the different areas of the NMC and now I talk about upcoming fundraising events every week. I also did a spot about Nantwich Cricket Club (where i do the cricket scoring) during the cricket season, talking about the previous weekends results. I promote events going on in Crewe and Nantwich and also Redshift Radio events and other Redshift shows.
What have you learnt? I’ve learnt how a radio station works and how to set up shows with music, hub sweepers (which play over the start over an intro to a song before the vocals start) commercials and community highlight news at the top of the hour. I’ve also learnt about how to speak properly on air including remembering to give time checks and learning how to talk over songs, especially how to get the fader levels right - all very technical and very radio geeky things...Haha!!
What do you get out of it? The opportunity to finally fulfil a boyhood dream to be a radio DJ, following in the footsteps of my radio heroes like Steve Wright, Mark and Lard, Terry Wogan and Chris Moyles. It’s a lot better than playing your tape cassettes and CDs at home while talking to yourself (which is exactly what I used to do as a kid....and in recent years using my iTunes if I’m being honest...Haha!!) Also the fact that I get the opportunity to spread the word about the fabulous work that we do here at The NeuroMuscular Centre.
Has it impacted other areas of your life? Like I said above, giving me the chance to talk about the work that I do at the centre, and also promote The NMC on radio, gives me a huge sense of pride. Also it’s made me an even more confident person (and those of you that know me know I’m a very confident person)
Tell us about the new things you’re learning about radio editing and production? At the end of August, Redshift Radio relocated studios from Crewe to Nantwich and Liz asked me if I was interested in getting involved with the production and editing side of RedShift in addition to doing my radio show. I was only too happy to do so. I started doing my additional role at the end of September, editing the community news and also adding backing tracks to our new Jingles...including my own....a very proud moment.
How and when can people listen in, make requests, and how can they catch up with shows they’ve missed? Since we relocated I’ve moved my show so now I’m on air every Tuesday evening between 6 and 8pm. We are an internet station so you can listen online at www.redshiftradio.co.uk/player or you can download the RedShift Radio app for free from your mobile app store (just search for ‘RedShift Radio’). You can also find us on the ‘Tune-In Radio’ app. You can send requests to my Twitter account which is @StevenBebe or www.twitter.com/ StevenBebe or message me on Facebook www.facebook. com/steven.bebe but you may
have to add me as a friend if you’re not already. Alternatively you can call or text the RedShift studio on 01270 262 262 when I’m on air.
If you cannot catch me live, I always upload my show to Mixcloud for people to listen to the following day www. mixcloud.com/steven-bebe/ (you may have to create an account to do so, but it is free
What does it involve and what do you actually do? I present a community news and music show called ‘What’s Happening with Steve Bebe’ which initially started on a Monday afternoon between 2 and 3 pm before moving to a new slot. In my first few shows I spoke about the different areas of the NMC and now I talk about upcoming fundraising events every week. I also did a spot about Nantwich Cricket Club (where i do the cricket scoring) during the cricket season, talking about the previous weekends results. I promote events going on in Crewe and Nantwich and also Redshift Radio events and other Redshift shows.
What have you learnt? I’ve learnt how a radio station works and how to set up shows with music, hub sweepers (which play over the start over an intro to a song before the vocals start) commercials and community highlight news at the top of the hour. I’ve also learnt about how to speak properly on air including remembering to give time checks and learning how to talk over songs, especially how to get the fader levels right - all very technical and very radio geeky things...Haha!!
What do you get out of it? The opportunity to finally fulfil a boyhood dream to be a radio DJ, following in the footsteps of my radio heroes like Steve Wright, Mark and Lard, Terry Wogan and Chris Moyles. It’s a lot better than playing your tape cassettes and CDs at home while talking to yourself (which is exactly what I used to do as a kid....and in recent years using my iTunes if I’m being honest...Haha!!) Also the fact that I get the opportunity to spread the word about the fabulous work that we do here at The NeuroMuscular Centre.
Has it impacted other areas of your life? Like I said above, giving me the chance to talk about the work that I do at the centre, and also promote The NMC on radio, gives me a huge sense of pride. Also it’s made me an even more confident person (and those of you that know me know I’m a very confident person)
Tell us about the new things you’re learning about radio editing and production? At the end of August, Redshift Radio relocated studios from Crewe to Nantwich and Liz asked me if I was interested in getting involved with the production and editing side of RedShift in addition to doing my radio show. I was only too happy to do so. I started doing my additional role at the end of September, editing the community news and also adding backing tracks to our new Jingles...including my own....a very proud moment.
How and when can people listen in, make requests, and how can they catch up with shows they’ve missed? Since we relocated I’ve moved my show so now I’m on air every Tuesday evening between 6 and 8pm. We are an internet station so you can listen online at www.redshiftradio.co.uk/player or you can download the RedShift Radio app for free from your mobile app store (just search for ‘RedShift Radio’). You can also find us on the ‘Tune-In Radio’ app. You can send requests to my Twitter account which is @StevenBebe or www.twitter.com/ StevenBebe or message me on Facebook www.facebook. com/steven.bebe but you may
have to add me as a friend if you’re not already. Alternatively you can call or text the RedShift studio on 01270 262 262 when I’m on air.
If you cannot catch me live, I always upload my show to Mixcloud for people to listen to the following day www. mixcloud.com/steven-bebe/ (you may have to create an account to do so, but it is free
Award For Bob
Bob Blaney has been volunteering at the Neuromuscular Centre for almost 15 years. He is a vital member of our physio team here at the centre and has helped many people over the years. He also has a very good listening ear and is very approachable!
Bob discovered the NMC when he was a carer to Frank Carter, a physio client. At the age of 65 Bob retired and It was from that point in his life Bob asked if he could join the physio team as a volunteer. Bob volunteer’s with us on a Monday and Thursday and also helped out at our open days. Bob tells me it was his wife, a carer by profession who inspired him into a caring role and volunteering.
Lynne Groves our senior physiotherapist recently nominated Bob for the Cheshire Voluntary Service Outstanding Volunteer Support and Service Award. He was awarded this at a gala evening in the presence of his wife, members of our physio team, Lynne Groves, Paul Orme and Gill Storey. This award is a fantastic validation of Bob’s work within the NMC community. Bob speaks very highly of all his colleagues at the NMC. He would especially like to thank Lynne, Paul, Gill and Helen for all their support over the years.
Bob has received recognition for many things, throughout his life. In 2007 he was nominated for the Siemens Care and Share Team Award and was also recognized by Cheshire County Council with a certificate of commendation. He was also a Director for the Disability Resource Exchange.
A proud moment for Bob was when he was successful in nominating Frank Carter to carry the baton in the Queen’s Jubilee Baton Relay when it came through Nantwich prior to the Commonwealth Games.
Bob also felt inspired by a poem called “A Crabbit Old Woman”. A piece of poetry close to his heart.
We would like to wish Bob many congratulation’s on his award from us all here at NMC!
Well done Bob!
Bob discovered the NMC when he was a carer to Frank Carter, a physio client. At the age of 65 Bob retired and It was from that point in his life Bob asked if he could join the physio team as a volunteer. Bob volunteer’s with us on a Monday and Thursday and also helped out at our open days. Bob tells me it was his wife, a carer by profession who inspired him into a caring role and volunteering.
Lynne Groves our senior physiotherapist recently nominated Bob for the Cheshire Voluntary Service Outstanding Volunteer Support and Service Award. He was awarded this at a gala evening in the presence of his wife, members of our physio team, Lynne Groves, Paul Orme and Gill Storey. This award is a fantastic validation of Bob’s work within the NMC community. Bob speaks very highly of all his colleagues at the NMC. He would especially like to thank Lynne, Paul, Gill and Helen for all their support over the years.
Bob has received recognition for many things, throughout his life. In 2007 he was nominated for the Siemens Care and Share Team Award and was also recognized by Cheshire County Council with a certificate of commendation. He was also a Director for the Disability Resource Exchange.
A proud moment for Bob was when he was successful in nominating Frank Carter to carry the baton in the Queen’s Jubilee Baton Relay when it came through Nantwich prior to the Commonwealth Games.
Bob also felt inspired by a poem called “A Crabbit Old Woman”. A piece of poetry close to his heart.
We would like to wish Bob many congratulation’s on his award from us all here at NMC!
Well done Bob!
10 Years producing One Voice - Andrea Duckworth
After ten years and hundreds of articles, Andrea is moving to new projects. We couldn’t let Andrea go without celebrating this achievement and asking her to offer some advice for the future.
One Voice began in 2005. There was a newsletter for supporters of NMC but I felt that there was an unmet need, and that physio clients and their families could benefit from one too. Being diagnosed with muscular dystrophy or an associated neuromuscular condition can often be very isolating and frightening. The purpose of this newsletter / magazine was to share ideas and experiences of living day to day with a disability and empower people to make the most out of their lives. I felt that having a disability should not prevent you from doing this. I wanted to get people talking and sharing their life experiences. I put forward a proposal to Sarah Kelly, the Chief Executive of NMC at the time, and she loved the idea. The rest as they say was history!
I encouraged clients, carers, volunteers, staff, and in recent years the Trustees and others in the NMC community to share their experiences. Through that, we have supported each other through the good times and reassured each other through the challenging ones! It has been wonderful to see, that having contributed an article to One Voice, how much people have grown in confidence. In so many cases it has boosted their self-esteem and self-worth. We have covered so many aspects of living with a disability including, pregnancy, parenthood, transition, life in a wheelchair, accessible days to mention just a few. One Voice has also inspired clients to try new things and some have started to learn to drive, something they never thought possible. In other instances when we covered some very sensitive subjects such as depression and bereavement, it was really important to actively listen and support clients through very difficult periods in their lives. As we celebrate One Voice’s tenth birthday, and look forward to the next ten years I would like to share a recent quote that I received from a client . “Thank you for making a big difference to all of us. You have no idea just how important the magazine is, in communicating, informing, cheering us all up and reassuring us”. So that leaves me to wish the new “One Voice Team”, Jon, Karen, Sanjay , Mark and Moyra the best of luck! How did you manage to do One Voice on your own? I guess it was like having a minibusiness! It was like having to do a dissertation at University, three times a year. Roughly 12,000 words per edition. I am a driven and motivated person and saw each edition as a new opportunity. The hardest part was chasing articles if they had not met your deadline. You would ask / send gentle reminders but sometimes you had to go without them, jig things around and change the content at the last minute. It always worked out in the end! As Editor, I felt fully responsible even when we had printing and technical errors which were completely outside of my control!
What tips would you give to the new team? Talk to different types of people, be really interested in what they have to say or are doing in their lives. Be approachable and friendly and offer support to people writing their articles. Be motivated and have an ability to see the bigger picture. It is also important to cope with pressure eg. Deadlines - several articles coming in at the same time or articles not coming in, so having to find alternative material at very short notice. What was your vision for the future? I firmly believe that life is there for the taking. Yes, you might need some support from a pa , friend, family member, colleague. That enables you so that you can achieve in every aspect of your life be that in your leisure time or work time. Generally the greatest barrier is yourself. Sometimes, we are our own worst enemies. With my professional experience of disability through NMC - One Voice and Advocacy, and my personal experience through my own disability and my son’s, I am in the process of setting up my own business as a Motivational Speaker / Life Coach / Advocate. I passionately believe that anybody can achieve in all aspects of their lives, whether they have a disability or not.
I am very excited about this venture and looking forward to working with NMC on projects in 2016. A Pharmaceutical company has asked me to speak later this month in Copenhagen at one of their events. They have asked for a patient to explain how they manage day to day living with Pompe disease. I am really looking forward to this opportunity but it will also be a bit daunting talking in front of 60 medical and commercial delegates from all over the world!
I see this as the beginning of a new chapter in my life. I always like to challenge myself, and as someone recently said to me, “you will not succeed until you move outside your comfort zone”.
One Voice began in 2005. There was a newsletter for supporters of NMC but I felt that there was an unmet need, and that physio clients and their families could benefit from one too. Being diagnosed with muscular dystrophy or an associated neuromuscular condition can often be very isolating and frightening. The purpose of this newsletter / magazine was to share ideas and experiences of living day to day with a disability and empower people to make the most out of their lives. I felt that having a disability should not prevent you from doing this. I wanted to get people talking and sharing their life experiences. I put forward a proposal to Sarah Kelly, the Chief Executive of NMC at the time, and she loved the idea. The rest as they say was history!
I encouraged clients, carers, volunteers, staff, and in recent years the Trustees and others in the NMC community to share their experiences. Through that, we have supported each other through the good times and reassured each other through the challenging ones! It has been wonderful to see, that having contributed an article to One Voice, how much people have grown in confidence. In so many cases it has boosted their self-esteem and self-worth. We have covered so many aspects of living with a disability including, pregnancy, parenthood, transition, life in a wheelchair, accessible days to mention just a few. One Voice has also inspired clients to try new things and some have started to learn to drive, something they never thought possible. In other instances when we covered some very sensitive subjects such as depression and bereavement, it was really important to actively listen and support clients through very difficult periods in their lives. As we celebrate One Voice’s tenth birthday, and look forward to the next ten years I would like to share a recent quote that I received from a client . “Thank you for making a big difference to all of us. You have no idea just how important the magazine is, in communicating, informing, cheering us all up and reassuring us”. So that leaves me to wish the new “One Voice Team”, Jon, Karen, Sanjay , Mark and Moyra the best of luck! How did you manage to do One Voice on your own? I guess it was like having a minibusiness! It was like having to do a dissertation at University, three times a year. Roughly 12,000 words per edition. I am a driven and motivated person and saw each edition as a new opportunity. The hardest part was chasing articles if they had not met your deadline. You would ask / send gentle reminders but sometimes you had to go without them, jig things around and change the content at the last minute. It always worked out in the end! As Editor, I felt fully responsible even when we had printing and technical errors which were completely outside of my control!
What tips would you give to the new team? Talk to different types of people, be really interested in what they have to say or are doing in their lives. Be approachable and friendly and offer support to people writing their articles. Be motivated and have an ability to see the bigger picture. It is also important to cope with pressure eg. Deadlines - several articles coming in at the same time or articles not coming in, so having to find alternative material at very short notice. What was your vision for the future? I firmly believe that life is there for the taking. Yes, you might need some support from a pa , friend, family member, colleague. That enables you so that you can achieve in every aspect of your life be that in your leisure time or work time. Generally the greatest barrier is yourself. Sometimes, we are our own worst enemies. With my professional experience of disability through NMC - One Voice and Advocacy, and my personal experience through my own disability and my son’s, I am in the process of setting up my own business as a Motivational Speaker / Life Coach / Advocate. I passionately believe that anybody can achieve in all aspects of their lives, whether they have a disability or not.
I am very excited about this venture and looking forward to working with NMC on projects in 2016. A Pharmaceutical company has asked me to speak later this month in Copenhagen at one of their events. They have asked for a patient to explain how they manage day to day living with Pompe disease. I am really looking forward to this opportunity but it will also be a bit daunting talking in front of 60 medical and commercial delegates from all over the world!
I see this as the beginning of a new chapter in my life. I always like to challenge myself, and as someone recently said to me, “you will not succeed until you move outside your comfort zone”.
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