Socialising when you have a Chronic Condition by Karen Pritchard

M aintaining friendships is such a rewarding experience, but living with a Chronic condition and pain can be very difficult.
Friendships play such an important part in people’s health and well-being. It can be very difficult to find opportunities to make friendships, so socialising and getting out and about is vital to our well-being.

It takes much confidence to find opportunities for friendship or social groups to join. We feel a need to play a part in society. It is so important to be given the same opportunities to make friends as everybody else.

Although it’s difficult to remain positive on bad days we must learn to turn to friends as a source of support. More often than not they can relate to our problems. At the other end of the spectrum – resolving conflict can seriously help our pain as the more we worry and stress, the more distressing pain is. Letting people know your limitations can also help as if you can’t do something, at least they understand the reasons. Most importantly be kind to ourselves and try to embrace the positives .....

Living with chronic pain can be tough both physically and emotionally. It is easy to skip activities like visits to the gym, swimming that uses up vital energy which we may need to store for other daily tasks. However, any exercise has many benefits and has been
shown to reduce pain perception, increase mobility, improve strength and balance and even reduce stress and tiredness.

For parents, it can be difficult to let your child out from your protective care and their safety bubble, but it is so important that they get out, make friends, and experience as much as they can. MD can sap your confidence - if you let it - and before you know it, you’re stuck at home. I’ve been there. Have a read of some of the things our readers of One Voice get up to - with a bit of planning, anything is possible. Don’t forget, you’re not alone - you’ve got the NMC community who will help and support you if there’s something you want to do but don’t know where to start.

A Centre user describes..... “My friends knew something wasn’t quite right but they didn’t dare ask me as they didn’t think I was ready to talk about it. When eventually I did tell them, I discovered they’d been really worried behind my back - because they care - no other reason. They didn’t leave   and run away like I thought they would - the opposite in fact.”

“I find by being out and about, people stare at me. That was my worry about being in a chair. But I soon realised it was rarely out of pity (which I assumed it would be) but out of ‘good on you getting out and about’ kind of inspiration. We are all unique and have many gifts and talents - sometimes we forget.”

Getting Up Again by Jon Mcvey

I fall frequently, usually the fall isn’t the biggest problem for me, it’s getting up.  I get around well enough using walking sticks, if a bit slow. but I don’t seem to have muscles in the right places to be of any use in getting me off the ground. This is where a clever inflating device called a Mangar Camel comes to my assistance.

Until I got my Mangar Camel, if I fell outside the only option I had was to call an ambulance.  I have had to do this when I fell on the drive and was stuck and unable to get off the ground but it seemed that there should be a better solution. I am about 6’4” and none too scrawny, my wife is a lot smaller and although she is remarkably strong, lifting me is really not a feasible option. 

Fortunately with the help of an occupational therapist I was able to get a Mangar Camel, although the process wasn’t straightforward as it was outside their normal purchasing practice. The Camel is basically a series of inflatable bags and a battery operated pump. It is laid out on the ground so that I can slide onto it.

The pump inflates the bags one at a time until I am raised into a sitting position.  This can be inflated quite high which is an advantage as I’m tall.  There is a smaller version called an Elk carried in Ambulances which does the same job, but the Camel has the advantage that it is a bit bigger and has a back support so I’m a bit steadier especially when there is one operator.  Also being wider it is easier to  push up from or transfer safely to my wheelchair.   It is small and portable enough that it can be used anywhere in our house or drive and we can put it in the car when we go away.

Falling is literally a bit of a pain in the backside, but the important thing is to get up again. The Mangar Camel at least gives me confidence that I will be able to do this reasonably quickly and easily.

Becoming Mr Sleek by Peter Marley

I decided to concentrate on my weight loss after my relationship ended.  I also had a diabetic check up and was told that I may have to go on insulin.  This made me determined to lose the weight I needed. I was 24st 12lb at the time.

To start with, I lost two stone alone with cutting out treats such as crisps. sweets, biscuits & chocolate. I was asked to go along to Slimming World to support a good friend of mine and then decided to join myself!

I joined in February 2016 weighing 22st 12lb  and set a target to lose 5st with Slimming World (I reached this target within 12 months so 7st loss in all).

The support I have received from the group has been amazing! There have been some great weight losses within the group which has been an inspiration to me.

I have been voted “Young at Heart Slimmer of the Year”, “Man of the Year” and “Mr Sleek” of the group!

At the time of this interview I have lost over 7st and would like to get close to my 16st target - then I would have lost a total 9 stone!

I’m finding that I’m able to move more freely, and physio have said I have more flexibility in my legs. This has give me more confidence in myself.

Juice Diet by Mark Chapman

For the last 4 years I’ve been on a juice diet on and off. For the weeks when I’m on the juices I just have a juice for my breakfast and lunch, then soup and a sandwich for tea.

Over the 4 years I have lost 3 stone, which makes me feel so much better I no longer have to worry about how I look and my clothes fit better. 

Most of the juices contain avocado, beetroot or banana as the main ingredient because that’s what fills you up. For the breakfast juice I usually have one with a banana, raspberries, blackberries and yoghurt. That’s good for breakfast as its light and it’s a good start to the day like cereal and cereal bars.

There are loads of juice recipes out there, I use a recipe book by Jason Vale who is known as the Juice Master.

My favourite juices are;

• Carrot, orange and mint.
• Beetroot, blackberries, apple and lime.
• Avocado, kale, cucumber, apple and lime.
• Pear, parsnip, apple and lime.

Many of the recipes contain lemon or lime, this is so that the juices stay fresh because the citric acid in the lemons and limes prevents the juice from oxidising, it also helps makes the juice taste good.
Since I’ve been doing the diet my health and well-being have improved, touching wood I haven’t had a chest infection or a   bad cold in that time.

All the vitamins and minerals within the fruit and vegetables used in the juices have boosted my immune system; this with the weight loss has made me a lot more confident and happy with myself.

The juices have given me more energy. I never feel bloated because the juices are nice and light but they are still filling and you aren’t left feeling hungry. My skin and hair is healthier, it’s a lot smoother, feels and looks stronger.

NMC Titans Progress by Mark Chapman

We  have been training regularly for over two months now, it’s going really well, everyone is enjoying it and developing well.

I have also enjoyed coaching the players, it has been a privilege and it is very fulfilling seeing them improve, develop and grow. Not only as players but as people as well, each week we train I have noticed a considerable increase in everyone’s confidence and in myself also. Being part of a football team also benefits everyone socially; we have all become good friends and I don’t think I just talk for myself here, but I look forward to each session. To have a catch up and banter with friends and have a kick about. 

We have got eight players including myself that train regularly. Sessions consist of getting used to the wheelchairs, first by weaving in and out of cones with and without the ball. Learning to hit the ball for passing and shooting. Learning to take a touch and then hitting the ball. This is then put into practice during different drills such as; tennis, where we split in to two teams and each team works together to hit the ball over the baseline, then piggy in the middle, where we make a big circle around the hall and have to pass the ball between us trying to keep it away from the defender in the middle and then we play a game, where we work together to score against a goalkeeper.

“These are very exciting times for us and the future is looking bright!”

The NMC have strong links with Manchester Metropolitan University (MMU), who have been working with the physiotherapy team for a while carrying out research on Muscular Dystrophy. Due to these connections they are letting us use their sports hall for training and have allowed us to place a storage container to store all our equipment.

Once we knew we had a place to train we started fundraising for the container and equipment, sports wheelchairs, goal posts and footballs. The fundraising went really well and we were able to order the equipment. Once we had all of this in place and we had five sports wheelchairs we could commence training and I could start coaching the players.  We had our first AGM the other week, where we discussed the club moving forward.

Everything is going to plan. We plan to enter the North West championship regional league in October, which will give us a few months to be ready. We also plan to organise a few friendly matches, these matches will be our first competitively. We are in the process of getting a kit; we have decided that it will be blue with an orange stripe across. We have had discussions with MMU and we are going to have them as our shirt sponsor, to mark our thanks and gratitude for all their help. Another good thing to come out from us creating a football team is the research opportunities for Matt from MMU and his colleagues, on people with Muscular Dystrophy participating in sport, and how it has a positive effect on our health and wellbeing.

If you are interested in joining please contact Bryn bryn.edwards@nmcentre.com, James james.taubman@nmcentre.com or myself mark.chapman@nmcentre.com.

Best Websites

www.cheshirefire.gov.uk/public-safety 
Fire safety is so important for you and your family. You can request a free fire safety visit that will help you address any fire risks and they will also provide a free smoke alarm. There are similar initiatives in other areas.

www.cheshireeast.gov.uk/care-andsupport/support-to-stay-at-home
If you live in East Cheshire this site has information about support to stay at home such as help with home maintenance, Finding a contractor, adaptations to your home, financial help for home adaptations, telecare and staying safe at home.

www.metoffice.gov.uk/services/mobiledigital-services/weather-app
It isn’t fun being out in severe weather if you have mobility problems. Make sure you stay one step ahead of the weather with the new Met Office weather app. As well as daily weather forecasts it also give you UK National Severe Weather Warnings.

www.nhs.uk (or in Wales www.wales.gov.uk/ immunisation, Scotland www.nhs24.co and NI www.dhsspsni.gov.uk)
Don’t forget your seasonal Flu jab. These sites have more information about seasonal flu.

Useful Gadgets

Electric underblankets
The bees knees I was introduced to electric under blankets following a lucky escape when a hot water bottle burst.  I have a profiling bed and use the back support daily.  The best one I found was the Dreamland fleece fitted electric under blanket.  It’s been fine whilst others kept breaking after a few months.  It has 6 heat settings and can be on for either 1 or 9 hours. I plug it into a timer switch to keep on for 2 – 3 hours, which is enough for me!  You can get them from John Lewis (single bed £40) with a 3 year guarantee. Well worth it!
http://www.johnlewis.com/dreamland16295-heated-fleece-fitted-single-electricunderblanket-white/p2999603#prev 

Message in a Bottle
A free and simple way to ensure that essential information is readily available to the emergency services should you suffer an accident or sudden illness at home. Free bottles are available in participating GPs surgeries, pharmacists, libraries, voluntary organisations and community groups.

Where’s My Droid
Having knocked myself out after a fall it seemed a good idea that I had some way for people to find me. The last thing I wanted was to lose my independence. I installed a free app called Where’s My Droid on my phone. It uses the GPS on the phone to shown the location on a Google map. If the battery runs out it records the last location. Also great if you lose your phone. www.wheresmydroid.com

Samsung phone voice activated camera mode
Do you struggle taking photos with your smart phone?  Keeping a steady hand, shaking it when you press the shutter button?  If you’ve a Samsung phone, you might have a ‘voice activated’ mode built in.  It’s great – you just say the word ‘smile’ or ‘cheese’ and it takes the photo automatically.  It can be used to take videos, use the timer mode or go to the gallery too. To switch it on, open the camera and click on settings (the cog) then the 3 dots.  Look for a microphone symbol that has ‘voice control’ under it – then tap it to switch it on.  Or depending on the model you have, touch the > in camera mode and then an icon with a microphone. Simples!   
More details are on the link below http:// www.samsung.com/us/support/answer/ ANS00040476/ 

Do you have any items that are great that you’d like to let us know about? Please contact the One Voice team!

Benefits ofRowing Machines by Karen Pritchard and Sanjay Vaja

The health and fitness benefits of rowing machines are much the same as those of water-based rowing, with a few bonus benefits that shouldn’t be overlooked.

Improves Cardiovascular Fitness 
Whenever you perform sustained exercise that increases your heart rate and breath volume, you’re working on your cardiovascular fitness. Rowing is great for the heart and lungs because it engages every major muscle group. That, in turn, requires your heart to pump more blood to your working muscle tissue delivering energy and nutrients to your cells while buffering away waste by-products, including carbon dioxide and lactic acid.

The body is incredibly efficient, and doesn’t like to exert itself, so when forced to work harder than it’s used to, it makes physiological adjustments so future exertion feels easier. When your heart pumps and you breathe harder, your body adapts so that the next time it feels a little easier. Just like that, you’ve improved your cardiovascular fitness.

Increases Total-Body Muscular Strength and Endurance 
Muscular strength and muscular endurance are two different things. In a nutshell, muscular strength is how much weight a particular muscle group is capable of lifting in a single effort – much like a single bench press. Muscular endurance, on the other hand, is how much weight a particular muscle group can lift repeatedly over time. For instance, how long you can ride a bike up a steep incline.

When rowing (as with swimming), you can increase both your muscular strength and muscular endurance because you’re repeatedly pushing and pulling against resistance for the entirety of your workout, spurring physiological adaptations that future exertion feels easier. That said, by increasing resistance over time, your muscles will grow and develop, becoming stronger.

What really makes rowing stand out is that it works your entire body. During the drive phase you’re engaging the major muscle groups of your legs first, then your core, and finally your upper body and back.

Low Impact 
As long as you maintain good form, rowing is easy on the joints. Because your feet remain in contact with the foot pads and your hands keep contact with the handles, there’s little to no impact being placed on the ankles, knees, hips, elbows or shoulders, all of which are prone to injury. This also makes it an appropriate form of exercise for those who are nursing an injury, or who feel physically uncomfortable during weight-bearing exercises.

A rowing machine is available to use here at the NeuroMuscular Centre, just speak to one of the physios and they will advise you and to ensure you’re using it properly. Rowing is an excellent form of exercise, but it’s not without risks. Poor form can result in injury, particularly to the lower back. And, as with any form of exercise, start slow    and work your way up.

Benefits of rowing here at the NMC
I enjoy using the rowing machine here at the centre. I first started to really get into it for Muscle Month. I feel much better in myself, uplifted and motivated, once I have completed my time on it. I started slowly and worked my way up on it. Rowing also helped me lose some weight which was a pleasant surprise!

Keep Strong Bones

Vitamin D helps to keep bones and teeth strong, and improves bone density.

It also reduces the incidence of falls in older people In fact, vitamin D plays a major role in the absorption of calcium and phosphorus, and in their proper utilisation.

We get most of our vitamin D from sunlight on our skin. The vitamin is made by our body under the skin, in reaction to summer sunlight. However, if you are out in the sun, take care to cover up or protect your skin with sunscreen before you turn red or get burnt. Many people can’t understand how vitamin D can be so good for so many different things. Most of the cells in your body, including brain, heart, blood, muscles, bones, liver and kidneys have special receptors for taking in vitamin D when needed, not just bones. That is why the benefits of optimum vitamin D are so diverse. In each case, those receptors are there for a reason, but the reason is different for each type of cell because each cell is specialized for a particular kind of work. If a cell is able to access vitamin D then it performs optimally. If not, it just has to manage without and do the best it can.

Vitamin D is a powerful anti-inflammatory agent, which may also contribute to its effectiveness in reducing some types of muscular pain. Older people with high vitamin D levels lose their muscle mass more slowly than those with low vitamin D levels.

Being severely deficient for a few months may affect your well-being in areas such as:
• feeling depressed
• poor resistance to infections
• increased pain, especially in bones and muscles
• increased inflammation
• feeling tired and sleepy during the day

Not everyone with vitamin D deficiency experiences all of these symptoms. In fact, some people are not aware of any symptoms at all. But even if you have no symptoms, a vitamin D deficiency still increases your risk for many serious conditions.

The symptoms of vitamin D deficiency can be very subtle, and may only worsen gradually over many years. And all of these symptoms can have other causes.

If you notice any of these symptoms – which may be worse in winter when vitamin D levels are at their lowest –  It is always best to consult with your GP if you have any concerns.  There are some rare conditions which can make you hypersensitive to vitamin D
• primary hyperparathyroidism
• sarcoidosis
• granulomatous diseases
• lymphoma
• histoplasmosis
• leprosy
• coccidioidomycosis
• some cancers.

If you have one of these conditions you will be under a doctor’s care and should only take vitamin D if it is prescribed for you.

If you suffer from kidney disease you also need to be careful about taking vitamin D, because of the danger of kidney stones. The reason for this is that vitamin D is a powerful hormone with far-reaching effects in the body. It can affect medications, treatment plans and dosages.
Actually you don’t need to remember these specific conditions, because there is only one general rule to remember:

Don’t take vitamin D if you are being treated for any condition by your doctor, without consulting him/her first.

Hydrotherapy Study - Carley Davies

Having volunteered at the NMC since January, I became involved in helping out in the Wednesday Hydro sessions.

A keen swimmer myself, I really enjoyed assisting, but most importantly, seeing the positive benefits of the hydrotherapy for people with neuromuscular conditions and muscular dystrophy. The physical and psychological benefits were clear to see, and I wanted to investigate the effects further. Consequently, when it came to choosing a research topic for my Masters dissertation, I chose to study the physical and psychological effects of hydrotherapy.

Upon researching the topic, I found that hydrotherapy provision on the NHS is very limited, particularly for people with long-term conditions, and particularly for adults. I found that there were plenty of studies demonstrating the effects of hydrotherapy for people with arthritis, for elderly people, and those with MS and fibromyalgia, but not for people with neuromuscular conditions.

Hopefully, by doing this study I will be able to demonstrate the benefits, and (should the work be published), promote this effective therapy to the NHS and GP’s. My study will consider the acute (that is, immediate) effects of the sessions on participants at the NMC. I have almost completed the data collection with my eight participants, and will hopefully be able to show the impact that it has. My research has involved physical and psychological tests (in the form of questionnaires), and when I have my results, I will be keen to share them with One Voice!

Alert Cards

Muscular Dystrophy UK has created condition-specific alert cards for different muscle-wasting conditions. These new cards mean that people living with muscle-wasting conditions and their families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with these conditions.

Alert cards are conveniently shaped to fit inside a wallet and outline key recommendations and precautions that health care professionals would need to know during a time of worsening health.

To make sure the cards are effective they cover a wide range of possible symptoms and situations. The card also includes important contact information on a person’s specialist neuromuscular and respiratory teams, which will ensure expert advice will be much easier to access.

They currently have alert cards covering ten conditions. For more information and to find out how you can get a Muscular Dystrophy alert card visit http://www.musculardystrophyuk.org/ alert-cards/

Maintaining your Mental Well Being by Karen Pritchard

We all can suffer from the stresses and strains of life, for some of us this can become a huge challenge and quite often leads to changes in our mental health. 

I admittedly find it a struggle with my disability, and often find myself reflecting on the negatives in my life.  In the past, I have suffered debilitating depression. To this day I still take anti depressant's to help with my mood.  I'm not ashamed of this fact, I have a positive outlook to mental health and if you find something that works for you then that's a positive way forward. 

It is so important that you stop beating yourself up.  I'm kinder to myself these days. I praise myself for even having a bath/shower or completing a small task in the home.  I'm even considering a cleaner to give my house a spring clean from time to time.  I did feel a failure for thinking about this option, but again I have to think what is best for my family and I.  

I would often stay at home whilst my family went on trips or days out.  When my pain levels were bad I didn’t want to do anything but stay in bed.  This would spiral out of control, and I would often find myself sad and depressed at home alone living my life on social media!  

Things had to change so, I phoned my GP to see if I could up my pain medication. I also concluded that my pain would follow me around like a bad penny so why not try and get out and about to take my mind away from it.  Rather than it control me, I needed to control it. 

I decided I also needed to take up some hobbies to boost my self esteem and improve my mental well being. At the moment I'm enjoying card making and I donate them to the NMC to help raise funds.  It's a very rewarding thing to do – makes me feel like I'm trying. 
Learning something new, or taking up a new hobby, can also boost your confidence and occupies your mind in a positive and active way. If you want to try a new hobby, think about what you are good at, or things that you have always wanted to try. You can find information about volunteering organisations and local groups, clubs or classes at your local library, in local newspapers or magazines, or online. 

If you are facing a difficult time, talking about the way you feel with someone you know and trust can often helps. Your friends or family may be able to offer you practical help or advice and give you another perspective on what is causing your problems. Even if they can’t help, often just talking something through and knowing that there is someone to listen and understand you can make you feel much better. 
 
If you feel you cannot talk to anyone close, try and think about booking an appointment with your GP.  If you feel like just picking up the phone and talking with someone there are also organisations which can help too. 
 
These include:  
 
The Samaritans 116 123 
Mind 0300 123 3393 

Acupuncture - My Experience by Karen Pritchard

I have been having acupuncture for several months now by our Physiotherapist Jonny Smith. This is a treatment that is available to clients at the NMC.
  
At first I was sceptical as I've had this sort treatment before and I didn’t gain from it as much as I thought I would.  Diane Hollister a lady with whom I attend hydrotherapy with had spoken highly to me of her acupuncture sessions with Jonny so, I thought I would give it a go! 

I was on edge the first few sessions.  I found it helpful if I closed my eyes and just simply switch off to everything.  Some days are harder than others but, the end result outweighs this. I feel very sleepy after the treatment, calm and relaxed and my level of pain feels better. I'm able to move my limbs with much more ease. But I would advise not driving home straight away, or if you have to, simply take a break before getting in your vehicle. 

I find that I'm sleeping much better at night since receiving the treatment.  

Diane has acupuncture on her leg and back every fortnight and sometimes her shoulder and finds she has a lot less pain following these sessions along with her hydrotherapy. Diane gains lots of benefits including better nights sleep.  

On one occasion Diane was unable to move her arm in any direction and after one acupuncture session around the neck/shoulder area she gained instant movement along with being pain free.  
I highly recommend this treatment on a regular basis. 

If you are interested please contact Jonny Smith Physiotherapist, NeuroMuscular Centre  
Telephone:  01606 861799 Email: jonathan.smith@nmcentre.com 

Exercise in the NeuroMuscular Centre

Here at the NMC we encourage everyone to exercise to the best of their ability and are set up to accommodate all activity levels. Previously it was thought that doing exercise as somebody with a neuromuscular condition would ultimately do more damage than it would good. However now the research is beginning to show that exercising at the right level for the right amount of time can have huge benefits.  

Some of the benefits of exercise include;  
* Maintaining range of motion in muscles and around joints, as the body moves during the exercises it is stretching the muscles and lubricating the joints. Recent studies have shown that exercise can have a similar effect on the muscles as stretching in terms of maintaining elasticity.  
* Improved muscle strength. Regular exercise will cause any muscles used to change and adapt. Exercising regularly against resistance will cause the muscles to get stronger allowing them to cope with the resistance applied. 
* Improved cardiovascular fitness. As the body is put through exercise the heart and lungs have to work at an increased rate to supply the body with enough oxygen to function. Doing this for a prolonged time can have long term benefits of the heart and lungs being more efficient, reducing heart rate and blood pressure. 
* Weight loss. Regular exercise is a key factor in aiding weight loss and when coupled with a healthy and balanced diet can show fast, healthy results. 
* Anti-depressant. Chemicals in the brain called endorphins which create the feeling of pleasure are released during exercise. This can have an antidepressant effect for an individual. 

 
Here at the NMC, the Physiotherapy team will be able to guide you through appropriate exercises and gradually build up your activity level as your fitness increases. There is a large range of equipment available working all areas of the body.  

We have three sets of "pedals" available to use. These include both arm and leg pedals which can be adjusted to any ability using the different resistance or assistance settings giving the upper and lower limb muscle groups a great workout and challenging the cardiovascular system to provide for the body. Anybody is able to use them whether in a wheelchair or able to walk. 

The cross trainer is a very clever piece of equipment allowing users to stand upright fully supported around all the major joints. It requires a Nordic ski movement, similar to a walk but with no bend at the knees. This is a full body workout which will activate every muscle and work the cardiovascular system to a high level. 

The recumbent bike is similar to the leg pedals however is only available to non-wheelchair users and focuses on lower limb muscle groups and the cardiovascular system. 

The rower is a current favourite in the department. Fully adaptable to all service users it pushes the cardiovascular system more than other machines. The resistance can be changed to suit any level of activity giving the whole body a very beneficial challenge. 

The department is always getting new equipment and is soon to be getting an accessible gym full of machines and spaces to exercise safely under the supervision of the physiotherapy team. If you or anyone who uses the centre is interested in exercising regularly do not hesitate to ask the physio team for any help or advice. 

Bryn Edwards  

Fall Monitors - Jon McVey

 

Are you worried about falling? If, like me, you spend time on your own and are at risk of falling, then a fall sensor may help to put your mind at rest. For me, a nasty fall resulted in a couple of weeks in hospital. Luckily my family were about, but after this there was naturally concern about leaving me home alone. This is where we were advised to look at a personal alarm system with a fall monitor.  My system is provided by a local scheme and comes in a package together with a personal alarm button, worn on a wrist band or as a pendant.  The fall sensor is about the size of a small pack of cards and can also clip onto a belt. It is not a perfect system, on occasions it seems oversensitive, being triggered when I sit down, then again I do sit down with quite a thud!  It has worked however, when I have fallen and my feeling is that when it is really needed, it is likely to work. It is another backup if I cannot push my alarm button. Once triggered, a box connected to my phone, calls through to a 24hr call centre and a friendly, reassuring voice comes over a loud speaker.  If I don't respond, the volume increases and then failing any response, they call in help.  My system costs about £23 a month, provided through Staffordshire Housing Association, but it is a price I am prepared to pay to give me and my family a lot of peace of mind.  
 
Telecare assessment and providers 
  
Cheshire East Council        
Telephone: 0300 123 5010 
The Adult Social Care Team run assessments and if you are assessed as being eligible they will pay for the equipment, installation, removal and maintenance. You will need to pay a small charge which covers the cost of monitoring the equipment and any visits that you may need. 
  
Cheshire West and Chester
Telephone: 0300 123 8123 (option two)  
Email: accesswest@cheshirewestandchester.gov.uk 
Telecare equipment will be provided, installed, maintained and removed free of charge. There is a weekly charge to cover monitoring and emergency mobile response. However, not everyone has to pay for their telecare service, as charges depend on individual financial circumstances. 
  
Other councils have similar schemes.  There are also many other providers and details of these can be found at tsa-voice.org.uk/service-provider-directory.

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

Airshows, a Great Day Out by William Garside

The Royal International Air Tattoo, run since 1976 is the largest military air show on the planet. For me the main draw to the 2015 show was the Avro Vulcan bomber which was flying its final display season.

As an Aerospace Engineer I must confess I can easily get carried away at air shows but before this happens I must mention the accessibility of the event. Held at RAF Fairford, a standby US Air Force base and former Space Shuttle emergency landing site it is suitably flat to accommodate such a large runway. As the event was so big there was a regular fully accessible bus service which takes you between the individual ‘zones’ along the airfield which included the static displays, stalls and company stands. There was also an accessible seating area which if you love plane spotting as much as I do is excellent because it is as close to and as near the middle of the runway as you can be which means that the flying displays are centred on your position! In total there were nearly eight hours of flying on each of the days of the event so there was certainly plenty to see.

Vulcan being put through her paces was a very impressive sight

Of course, the show is not just about the many aircraft flying with many more on the ground to look at and the sheer number of aircraft is impressive on its own. For me the highlight of the static displays had to be the Royal Air Force’s huge new Airbus A400M ‘Atlas’ transport aircraft. It was open to the public and access into and out of the aircraft was via the huge rear ramp which went down to ground level. Now as a powerchair user I had to take this as a challenge and with a run up made it up the ramp into the main cabin. Indeed from experience I can say that the RAF’s new airlifter is wheelchair accessible!

The A400M ‘Atlas’ with its rear ramp is incredibly manoeuvrable for its size

So in conclusion the Royal International Air Tattoo is a fully accessible event. With so much to see I cannot recommend it enough, even if you’ve never been to an air show before. Unlike many large air shows it is held every year and I can assure you, its scale, flying and static displays are sure to impress!

For information about forthcoming airshows visit www.air-shows.org.uk

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.

Finding Accessible Toilets

Do you need toilets with facilities such as hoists to enable you to get out and about and enjoy the day-today activities?   In 2006 the Changing Places Consortium launched its campaign on behalf of people who cannot use standard accessible toilets. This includes many people with neuromuscular conditions.  The Changing Places website has a directory of toilet faculties in safe and clean environments, with enough space and the right equipment to meet the needs of people who use them. Each toilet on their database has to meet their specific standards such as a height adjustable changing bench and a hoist and enough space for carers. Unfortunately the British Standard for Changing Places does not include raised or raising toilet seats for those who would find this an issue. 

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

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/