NMC Training’s Exciting Developments by Dee Valkering

New room

The training department has gone through lots of exciting developments in the last couple of months. We have currently moved into a new, larger training room. This will give us the possibility to expand our work stations and deliver training to more students at any one time. It also gives us the opportunity to run more courses and/or workshops along side each other.

More courses on offer NMC

Training has expanded their course offer to Life Skills, including English & Maths and personal skills, Animation, Digital Music and a soon to be started Photography workshop. Currently we run Graphic design and Digital Music courses at the same time. It is great to see how the graphic design students are also keen to try the digital music course once they see their peers working on a piece of music. The digital music course is a fun course for anyone who enjoys music and would like to compose a piece of music themselves. Candidates work on a computer with a piece of music software called “Garageband”. This easy to use program allows users to put together music from pre-prepared loops in a variety of styles. Newcomers will be guided through the early stages of making something simple, but sounding good. Equally, users with more experience are coached through more advanced skills and using more complex combinations of music.

New tutors

We would like to officially welcome Steve Gaffney and Chris Burden as new members of the training team. Steve Gaffney is an experienced tutor and talented musician. Steve delivers Life Skills and Digital Music on Mondays and Tuesdays. Chris Burden graduated with a BA in Animation at Edge Hill University last year and currently delivers a 20 week Animation course, which is held once a fortnight on a Monday.

Taster sessions for ALL ages

The courses at NMC Training are for ALL ages and no previous experience is necessary.  Would you like to try any of the courses? Feel free to come along for a taster session and gain new skills in a friendly and informal environment. Suggestions for new courses/workshops welcome We welcome everyone with suggestions on other skills they would like to gain as we are currently looking for more ideas on a range of workshops/courses.

Or do you have a particular skill which you would love to pass on to other people? Please do pop into training and have a chat with us as we are open to delivering a wide range of workshops/courses. You can also email Dee dee.valkering@nmcentre.com

Animation Courseat NMC by Andrew Woodvine

On the Animation course my experience, at first, was I thought it was boring. But as I pressed on, I got to know Chris and what animation entailed, and now I’m enjoying it so much that I’ve started animating at home! So far I’ve achieved 7 out of 10
seconds of my animation - it’s taken a while but I’m pleased with what I’ve done.

I would recommend this class to other people because I felt that I was given freedom to use any program and any technique to complete my work. This is unlike previous courses I’ve done where you’re sometimes limited to what has been set in a brief, or by the tutor. I felt happier choosing how I went about animating. I like doing the course at the NMC because it’s a familiar place as I also attend for physio there and know a few people. That makes it more comfortable as sometimes it can be difficult talking to new people, but as I say the NMC is a familiar place so it makes talking to people easier. I also feel I’ve made friends on the course so that makes going more fun. By the end of this course I hope to gain some knowledge and skills in Photoshop as well as animation and I hope to have maybe gained some friends. All in all I’ve thoroughly enjoyed the course and would do it again.
Do you fancy creating an animation like Andy? Would you like to do a taster session? Please go and see Kay in the training department or drop us an email: dee.valkering@nmcentre.com

Animation by Chris Burden

I have played games on many different games consoles. I was fascinated by the way they had been designed. This interest developed while I was in Secondary School, but there was a lack of software in school and the teachers at school only taught I.T. The school’s career advisor was aware of the NMC and the types of computer study that were available there, and eventually I attended the NMC 1 day per week over a period of three years. It was here where my horizons widened! I became adept at designing and producing posters, leaflets etc. Upon leaving school I went to Hereward Residential F.E. College, which was primarily for disabled people. It was here where my graphic skills went to a new level, and I was working from briefs and working to deadlines. It was at Hereward that I got certificates in design and graphics.

I stayed at Hereward for three years. I have to say I enjoyed every minute of my time there, not only learning about graphics, but I learnt how to live independently, and the social life was excellent. After leaving Hereward I returned to my family home, and Knowsley Council appointed a social worker (Ruth Jones) to me. She persuaded me to continue my studies. I visited a few local F.E. colleges, Knowsley Community College and Hugh Baird College in the borough of Sefton. I chose Hugh Baird College because it had a wider range of courses that would add to my graphic skills. The course was Art & Design leading to a H.N.D. The course was a ‘condensed one year course’, but I completed it over two years. The reason why I completed the course over two years was because my work rate was quite slow due to my disability, and my tutor wanted to assess what equipment and software I could use to help me complete the course. It was the teaching assistant at Hugh Baird who got me to try creating animation. I produced a short animation and I also developed directing skills which was useful in producing diary type videos depicting everyday activities. I had to produce a portfolio of work in support of my H.N.D. At the end of the course all the students displayed their portfolios to the general public.

I went to Hugh Baird with no intention of doing a degree in Animation, but whilst on the course the tutors used gentle persuasion to get me to do the degree course. It helped that I enjoyed the H.N.D. Course in Art and Design, so I applied for an animation degree course at Edge Hill University.

One of the criteria for the degree course was G.C.S.E. in English language. I studied for this in parallel with my H.N.D. Course. I was accepted by Edge Hill onto the animation degree course. I lived on campus throughout my degree. I learnt how to produce animation to a professional standard and learnt how to write scripts and introduce the necessary elements that go into producing an animation.

For my final project I had to produce a promotional video for a company. So I contacted Matthew Lanham, the Chief Executive at the NMC, and discussed producing a video promoting the Centre and to install it on their website to attract new clients.

Upon Graduation I contacted Dee Valkering (Head of Training at the NMC) to suggest teaching my animation skills to any of her students who may have been interested in learning about the subject. I presented a ‘tester workshop’ to gauge the level of interest in the course, and there appeared to be a keen interest from the students. So now I am teaching one lesson per fortnight at the NMC!

My life at the NMC has come full circle from a student to a teacher! At the end of the course the students will have produced a ten seconds animation. Different students work at different paces, which is understandable, but all the students appear to enjoy being on the course.

Support within the NeuroMuscular Centre by Denise Boyall

Living with a neuromuscular condition can present many challenges to daily life at home, when enjoying social activities, at work, at school or university, when travelling or even when sleeping.
Within the NeuroMuscular Centre are a wealth of people with experiences, knowledge and ideas to share.

Here are some of the ways you can be involved in giving or receiving support to help you to make the best choices when faced with those challenges:

• Arrange a visit to the NMC - see the people and the facilities it offers. Please ring or email Denise or Matthew on 01606 860911.
• Use the NMC website for current events and to search for information from previous editions of One Voice.
• Browse the information in the lounge area.
• Book an appointment for a session of Complementary therapy.
• Consider taking part in one of the NMC well being courses such as Mindfulness
• Become involved in one of the NMC clubs, such as gardening, woodwork or craft and share your skills or learn new skills.
• People at the NMC can offer practical and emotional support as NeuroMuscular conditions change over time.
• Peers can help guide young people moving from life at school to life in the ‘adult’ world, and activities such as Bushcraft are an amazing way to develop independent life skills.
• When employment needs change, a discussion with the NMC designers or training team may help you to consider new directions and ideas.
• The NMC has an experienced care team and has many shared experiences from people arranging support and care.
• Financial issues can be a source of great anxiety. Please do not worry alone , there are people here at the NMC who can help you to complete forms, write letters of support or help you to contact the appropriate organisations.

Spinraza and SMA by Jonathan Smith

Individuals with SMA experience a loss of motor neurons - the nerve cells responsible for the generation of impulses which produce movement in the limbs and body - in the spinal cord. This is due to a genetic defect affecting the SMN1 gene which produces the Survival Motor Neuron Protein (SMNP). Over time, insufficient levels of SMNP lead to a decline in the number of motor neurons within the spinal cord, resulting in a loss of movement, muscle weakness, and reduced function and independence. Individuals with SMA retain some movement due to the presence of a less powerful version of the SMN1 gene called SMN2 (Scientists like to keep things simple!)

“...so far, Spinraza has managed to satisfy the criteria for safety and effectiveness”

Spinraza, when injected directly into the central nervous system, effectively converts the less powerful SMN2 gene into SMN1, which produces normal amounts of SMNP and therefore prevents loss of motor neurons and the functional issues that come with muscle weakness in SMA. For anyone feeling confused at this point, that’s the science bit over, and the outcome is that this is ‘so far, so good’ for Spinraza as a treatment for SMA! Therapeutic drugs have to pass through a multitude of hoops before they can be approved for license to use on actual human beings and, so far, Spinraza has managed to satisfy the criteria for safety and effectiveness.

So much so that in December 2016 it was granted approval from the Food and Drug Administration in the USA for use in SMA, and additional funding was provided. An article published in the Lancet in 2016 demonstrated the effects of Spinraza on a group of SMA infants <7 months old, noting improvements in motor function and survival rates in the majority of participants.
http://thelancet.com/journals/lancet/article/ PIIS0140-6736(16)31408-8/abstract)

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.”

Useful Websites - Filling Your Car

If you are an unaccompanied disabled driver it can be very difficult getting the help at petrol stations. The situation has been made even more difficult by the introduction of chip and pin as this has made paying very difficult for drivers who cannot easily get out of their vehicle, as standard card terminals cannot be used on the forecourt.

myhailo.co.uk

Simply press the button on your MyHailo fob to alert filling station staff that you need assistance. This is a rebranding of the Contacta system we reported on in a previous edition. If you have a Contacta fob it will work just the same. This system has been adopted by Sainsburys, Asda, Tesco and Cooperative service stations service-call.net This is system uses an infrared transmitter and has the benefit of there being a very large number of participating stations.

fuelservice.org - recommended by Heather Murrant

This is a smartphone app that will let you find a petrol station know in advance of arrival if there is a person available to help you at the petrol station before you arrive. If you don’t use a smartphone there is a text messaging service you can use. It has plenty of stations across the country, and the nearest to the centre are at Middlewich, Northwich and Sandiway.

New Road Tax Rates 2017

If you receive the enhanced rate for mobility for PIP or the higher rate for mobility for DLA then you are eligible to apply for exemption of Road Tax.

If however you receive the standard rate mobility component of PIP then you are eligible to apply for a 50% reduction.

To claim the 50% reduction the vehicle must be : • Registered in the disabled person’s name or their nominated driver’s name. • It must only be used for the disabled person’s personal needs. That means
the vehicle can’t be used by the nominated driver for their own personal use. • You can only have one vehicle tax exemption or reduction at any one time • You can apply for the 50% reduction if you get the Standard Rate mobility component of Personal Independence Payment (PIP)

If you are entitled to the 50% discount, then you can ONLY obtain this by sending the appropriate paperwork to DVLA, Swansea, SA99 1DZ.

For more information visit: www.gov.uk/ financial-help-disabled/vehicles-andtransport

Useful Products by Mark Chapman

Echo Dot I got an Amazon Echo Dot for Christmas and I love it, it’s made my life so much easier. Amazon Echo Dot is a hands-free, voice-controlled device with a small builtin speaker - it can also connect to your speakers or headphones over Bluetooth or an audio cable to play stereo sound to any speakers you choose. Echo Dot connects to the Alexa Voice Service to play music, provide information, news, sports scores, weather and audiobooks. The Echo Dot is always learning and keeps being updated with more features and accessories being added every month.

If you sign up to Amazon Prime, members can also ask Alexa to order eligible products they’ve ordered before and many Prime products. All you have to do is ask.

Echo Dot can hear you from across the room - even in noisy environments or while playing music. When you want to use Echo Dot, just say the wake word “Alexa” and Echo Dot responds.

You can buy the Amazon Echo or the Echo Dot. The Echo has an in-built speaker, but is unable to connect to other speakers and at £150 is a bit on the expensive side. The Echo Dot on the other hand can connect to any other speakers and at £49 is a lot more reasonable.

It allows me play music and turn the radio on without me having to ask someone to do it for me. All I have to do is say “Alexa, play…” and voilà it starts playing. It virtually has almost every song you can think of. It not only lets me play music but it allows me to control my lights and my TV. I had to buy Philips Hue lights and a Logitech Harmony Hub extra, which connects to my wi-fi and the Echo so that I can turn my lights and TV on and off with just my voice. It cost me a bit to get it all set up but it is well worth it because it has given me independence, just being able to control things by myself its amazing how much confidence it gives you.

My New Powerchair by Jane Bradley

I had a power chair provided by wheelchair services but it just was not suitable and because Ralph had had surgery and recovering from cancer we really needed a chair with a riser function, Wolverhampton services will never fund a riser power chair so I had to look elsewhere and this is where NMC was invaluable.

Denise arranged for me to try wheelchairs and for Eric and Dave Headford to come to the NMC with a selection of power chairs and they were able to find one with everything I needed and even add features I didn’t know were available to suit my needs exactly. Once that was decided I then needed to find what if any charitable grants were available. Once again Denise came to my aid. She printed out a list of charities online I could approach she actually gave me a list with 30 on!!!

I worked my way through them and found some were just for children and teenagers and some were just for people living in certain areas of the Country but I was able to find 5 I could approach as a starting point.

I also went on a site called “Turn To Us” online and under the section “Grantsearch” was able to find a few more. I contacted the charities and asked for application forms you can either do them online or ask for forms to be posted.

When I first got the forms I found them a little daunting so I took my time and filled them in a bit at a time!! They do ask for income and savings but really that is fair as then the funds can go to those who really need it. Also Denise was with me every step of the way and always at the end of the phone when I got stuck I really could not have done it without her and I know she would do the same for any of the NMC patients.

So the wonderful results were that I got all the funding for my £8.746.00 Quickie Salsa M2 Mini !!!
The funding came as follows IHA Independence at Home £500 Act Foundation £2,000 Florence Nightingale £2,264.00 Tishie Yong Foundation £1,500 Joseph Patrick Trust £2,500

All of these charities are easy to find online. I made contact with a Brenda Yong at the Tishie Yong Foundation and she is a lovely helpful lady. Also Ann Griffiths at the Florence Nightingale Trust was very helpful.

I was quite overwhelmed by the generosity of these charities as I really didn’t expect to get all the funding and I am forever grateful. I also made a point of writing and thanking them all for their help which they then thanked me for thanking them so that was nice!

And again my thanks go to Denise for all her support and everyone at NMC who do so much for all their patients what would we do without you all!

Changing the Perception of Homecare for People with Muscular Dystrophy by Ben Selby, Managing Director of Right at Home South Cheshire

Having worked in community and home care services for 15 years I’m truly excited to have now set up my own care company, Right at Home South Cheshire. We are a home care provider based in Crewe, and the way we operate is very different to the vast majority of home care services.

My main motivation for starting the company was based on a poor experience with my Grandad when he needed home care. Unfortunately, what he experienced was irregular times; short visits;

Carers were often strangers, not well trained, and they were numerous. Not surprisingly, home care didn’t work for him so we ensure we don’t make any of those mistakes. Our key differences are:

• Carers are always introduced to Clients
• We match our Carers to our Clients using one page profiles
• We keep the number of Carers visiting as low as possible
• Preferred minimum visit time of 1 Hour
• Our clients choose their times, and those times are regular
• We provide our Carers with an excellent baseline Induction, followed by specialist training when it is needed (more info below)

I stumbled across the NeuroMuscular Centre in 2016 whilst doing some market research prior to starting Right at Home, and was really struck by everyone I met and the culture of the place just felt amazing. Having spoken to a number of the staff and many of the visitors who come to the centre for physio, support, and to socialise it became apparent to me that there was a real lack of confidence in home care companies to provide care and support services.

This is why we have started to work with staff at the NeuroMuscular Centre to work towards having a team of staff who we can confidently call neuromuscular specialists. So far we have worked with Physios at the centre to deliver a specialised training session to a group of our Carers, covering many key areas including:

• An introduction to Muscular Dystrophy; the different types and how they affect the individual
• Specific Moving and Handling techniques
• Basic Physiotherapy techniques
• Oral hygiene and mouth suctioning
• An introduction to gastrostomy tubes
• Releasing air from the stomach
• Ventilator mask and head gear

We are now building a library of resources at our office, where Carers can pop in and continue to build and develop their knowledge. We know there is so much to learn but we are hungry for knowledge and we have a group of Carers who really want to become specialists.

If you’d like to know more or if you wish to arrange a no obligation, free care consultation, please don’t hesitate to get in touch with Kirsty or Ben on 01270 257347 or email southcheshire@rightathomeuk.com

Complimentary Therapy by Beverly Langley

Beverley Langley, our complementary therapist, has increased her days at NMC and now is available on Wednesdays, Thursdays and also on alternate Tuesdays to provide complementary therapies and manual lymphatic drainage to our patients and carers. We have also purchased a Hivamat machine that is used for the treatment of oedema. Beverley also has a notice stand in the lounge area to show any available slots for the day.

Please note that all treatments for service users, staff and carers are free of charge. Treatments currently offered are massage, aromatherapy massage, reflexology, and manual lymphatic drainage.
Please contact Beverley on: 07756 853 089.

Physiotherapy Department by Gill Storey

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

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

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

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

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