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, work and independence - James Taubman

I am a 23 year old business graduate originally from North Wales. I have Duchenne Muscular Dystrophy which I was diagnosed with at birth. I have used a wheelchair ever since I was 12 years old.

University
In 2013 I graduated from Glyndwr University in Wrexham with a BA in Business Marketing (2:2). The assessment consisted of coursework, examinations, group work and presentations. Attending university was a really enjoyable 3 years both from a social point of view and an educational aspect. The facilities and services for disabled students were very good.

Work Experience and Training
The NMC has given me with vital work experience, which was the initial reason that I made contact. Fresh from graduating from University, the NMC have provided me with a platform to gain new skills, which have included learning database software, speaking at events, marketing tasks such as creating product packages, and I recently began a graphic design course in-house.

I work at NMC as a Database and Marketing Assistant, and my main role involves assisting in the management of all the NMC databases. Joining and being part of NMC has brought so many benefits.
My condition has a physical impact on my work ability in the following ways;

• Difficulty in using standard desks
• Using a keyboard to type is a  struggle  - Drinking and eating  - Using the toilet.

NMC services that help me include;

• Height adjustable desks throughout the building  - Providing computers or laptops with on-screen keyboard devices 
• Care assistance with eating,  drinking or anything physical  - Providing unique and specialist physiotherapy
• Fully accessible toilets and rooms with hoists
• Helpful support and advice  about the condition or just general matters
• Work experience and training motivation.

Physiotherapy & Exercise Prior to attending NMC I had not received any physiotherapy since school. I now have physiotherapy once a week, which helped me physically and mentally. This treatment also allows me to access the specialist equipment including the exercise arm and leg pedals and tilt table beds to stand supported.

I find the Neuromuscular Centre a great and welcoming place to visit. It provides a sense of community with an enjoyable work environment that is professional and highly sociable at the same time.

Independent Living
I live in Chester City in my own apartment with 24 hour care. Many of the people that help care for me are friends that I have met, so we are a close knit team. Whilst at university I began my care package with a care agency. However, after a year we switched to direct payments which has proved easier, providing me with more choice over who cares for me.

Leisure / Driving
I did attempt to learn to drive and had several lessons with an instructor in an adapted vehicle. However I felt it just wasn’t for me. This hasn’t stopped me getting around as I have a Motability vehicle which my PA drives. I have travelled abroad around Europe, USA & Canada, the most memorable places being Amsterdam, Toronto and New York.

I enjoy nights out with friends, going to the cinema, music concerts, days out/walks and eating out. One of my big passions is football. I‘m an Everton fan and also a season ticket holder so I go to home games. I have also been to Wembley twice.

A Parents Perspective – Sophie Hawes

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

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

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

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

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

You Can Do It! - Millie Hawes…..

I have Spinal Muscular Atrophy Type 2 and first came to the NMC at the age of 16. It was spooky moving from children's physiotherapy to adult's but totally worth it. 

I have fortnightly physio and hydro here at NMC which not only helps me maintain my strength, but it has also hugely increased my confidence as I can ask for advice from the friendly physios and other people in similar situations. There's always some great banter too! 

I'm now 18, have finished my A Levels and am Durham University reading Law which is terrifying but exciting too! The physios have provided a huge amount of support whilst I've been going through the process of getting funding for carers. The sessions themselves have made me feel fitter and more prepared for life in the big bad world. 

Not only this, but they have given me the chance to complete my Gold Duke of Edinburgh Award. In order to get the award I had to complete five sections: a year of volunteering, a year of physical activity, six months of learning a new skill, have a week away from home doing some sort of activity and complete a four day expedition. The physio and hydro sessions were part of my physical activity and the fitness that I developed from this, allowed me to trek 20km a day, for four days   across the Peak District using my powerchair. This was a huge challenge but totally worth it as I've now finished all sections of the award and will be invited to St James's Palace to meet the Duke himself! All of which I wouldn't have been able to do without the NMC. And now the next challenge ………university!