Hynt is a new national access scheme that works with theatres and arts centres in Wales to make sure there is a consistent offer available for visitors with an impairment or specific access requirement, and their carers or personal assistants. The site will tell you all you need to know about Hynt: who it’s for; what it provides; and how to become a member.
Members are entitled to a free-of-charge ticket for their personal assistant or carer when attending performances at any of the Hynt theatres or arts centres.
Visit www.hynt.co.uk to search venues shows and accessibility. contact: info@hynt.co.uk
Different conditions, different backgrounds and different experiences.
Monday 27 November 2017
Tuesday 1 August 2017
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
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.
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.
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!)
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)
“...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.”
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
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.
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!
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:
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:
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
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.
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:
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.
Monday 1 May 2017
Spinraza and SMA
Spinraza (INN Neurinosen) is a drug produced and marketed by Biogen. It is the first pharmacological therapy ever to be given broad approval for use in the treatment of Spinal Muscular Atrophy (SMA).
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 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!) 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 incentive 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/PIIS01406736(16)31408-8/abstract)
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 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!) 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 incentive 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/PIIS01406736(16)31408-8/abstract)
A Drone at the NM by Mike Brown
After my FSD kicked in some fifteen years ago I lost my job in the hospital, and concentrated on my work as a professional photographer.
Many years and many weddings and portraits later, the condition was also to relieve me of that job too as the camera became too heavy to carry, and my legs did not want the workout any more. I turned to taking landscape images, as I had all the kit, and I could take my time setting up on a tripod, and perhaps do ten or twenty a day instead of a thousand. But I was also limited to where my stick or wheels could take me until along came drones. There can be hardly anyone who has not heard of them, if not seen them. But a camera drone would allow me to go where I could not with my legs, and still take the images I wanted to. It would also allow me to take my image taking to greater heights, literally.
The choosing of a drone and the legalities of it all could complete an article all on its own, so I will not go in to it here, but a chance conversation whilst at the NMC led me to photograph the building and its surrounds from the air. A “mission” as they are now popularly called, requires planning and luck. Planning what images you want to take, planning how you will take them, and of course planning around the weather. That is also where the luck comes in. The drone I have, a DJI Phantom 3Pro, will fly in winds up to around 15 knots. The lower the wind the better the pictures though. Lighting is important too. As you will see later. On top of that other things need to be checked and planned for. Is there any aerial activity nearby? Are there any power cables or trees? Are there any prohibited zones like schools or nuclear power stations?
On the day of the “mission”, the weather was very kind with patchy sun and little wind. Early fog had dissipated. However, there were a couple of problems before I could fly. The school next door firstly. They were most kind and co operative when informed about the flight , and requested an image from me. Secondly, there was a restriction on flying because of a nearby airfield, and I do not mean Speke or Manchester. I had permission to fly no higher than 120m, and always within sight.
So I trundled the drone in its converted suitcase on wheels down to the summer house, pulled up a chair and assembled it all. Yes it can all be done sitting down. Taking off from the wooden walkway
and then off to take the pictures. First the still images and then the movies. Some of the images are here, and others can be seen at https://mikeeaa6.myportfolio.com/disabledphotographer
Many years and many weddings and portraits later, the condition was also to relieve me of that job too as the camera became too heavy to carry, and my legs did not want the workout any more. I turned to taking landscape images, as I had all the kit, and I could take my time setting up on a tripod, and perhaps do ten or twenty a day instead of a thousand. But I was also limited to where my stick or wheels could take me until along came drones. There can be hardly anyone who has not heard of them, if not seen them. But a camera drone would allow me to go where I could not with my legs, and still take the images I wanted to. It would also allow me to take my image taking to greater heights, literally.
The choosing of a drone and the legalities of it all could complete an article all on its own, so I will not go in to it here, but a chance conversation whilst at the NMC led me to photograph the building and its surrounds from the air. A “mission” as they are now popularly called, requires planning and luck. Planning what images you want to take, planning how you will take them, and of course planning around the weather. That is also where the luck comes in. The drone I have, a DJI Phantom 3Pro, will fly in winds up to around 15 knots. The lower the wind the better the pictures though. Lighting is important too. As you will see later. On top of that other things need to be checked and planned for. Is there any aerial activity nearby? Are there any power cables or trees? Are there any prohibited zones like schools or nuclear power stations?
On the day of the “mission”, the weather was very kind with patchy sun and little wind. Early fog had dissipated. However, there were a couple of problems before I could fly. The school next door firstly. They were most kind and co operative when informed about the flight , and requested an image from me. Secondly, there was a restriction on flying because of a nearby airfield, and I do not mean Speke or Manchester. I had permission to fly no higher than 120m, and always within sight.
So I trundled the drone in its converted suitcase on wheels down to the summer house, pulled up a chair and assembled it all. Yes it can all be done sitting down. Taking off from the wooden walkway
and then off to take the pictures. First the still images and then the movies. Some of the images are here, and others can be seen at https://mikeeaa6.myportfolio.com/disabledphotographer
Glycogen Storage Disease (GSD) support group
People attending the NeuroMuscular Centre have numerous, but typically rare conditions. There are other focused support groups that offer something different and complimentary to the NMC. One such group is the Association for Glycogen Storage Diseases UK.
The group was formed thirty years ago in 1986 by two mothers who both had a child with a rare Glycogen Storage Disease (GSD) The group has grown over the years and has funded early research in to treatments and therapies. The Association is run, informed and supported by its members and they aim to provide a warm welcome to anyone diagnosed with a GSD including McArdles and Pompe . As with many neuromuscular conditions, the chances are they have had a long and difficult journey to diagnosis. The group has a Pompe Support Team, a group of people with Pompe who are willing to provide a listening ear or talk about common experiences. For more information visit www.agsd.org.uk.
Wins
The group was formed thirty years ago in 1986 by two mothers who both had a child with a rare Glycogen Storage Disease (GSD) The group has grown over the years and has funded early research in to treatments and therapies. The Association is run, informed and supported by its members and they aim to provide a warm welcome to anyone diagnosed with a GSD including McArdles and Pompe . As with many neuromuscular conditions, the chances are they have had a long and difficult journey to diagnosis. The group has a Pompe Support Team, a group of people with Pompe who are willing to provide a listening ear or talk about common experiences. For more information visit www.agsd.org.uk.
Wins
Assessment of Fitness to Drive by Gary Jones Centre Manager
Opening of an accredited driving assessment service for the Cheshire and Wirral region.
With increasing demand for drivers to undertake assessment of their Fitness to Drive following onset of cognitive or physical changes that could impact upon driving ability, a new accredited driving assessment service will begin operation in March 2017 to serve the Cheshire and Wirral regions.
Supported by The Department for Transport this new venture will be staffed by a team of experienced Occupational Therapists and Driving Advisers to ensure the most complete and robust assessment of cognitive, visual and physical abilities in relation to an individuals’ practical Fitness to Drive.
As an accredited member of Diving Mobility (www.Drivingmobility.org.uk), Chester Driveability is able to deliver assessments on behalf of DVLA, Motability and health professionals who are advising on the Fitness to Drive of individual patients.
Chester Driveability will be operated by The Wales Mobility and Driving Assessment Service (www.wmdas.co.uk) who have over 25 years’ experience of assessment of Fitness to Drive on behalf of DVLA, health professionals and individual service users.
With increasing demand for drivers to undertake assessment of their Fitness to Drive following onset of cognitive or physical changes that could impact upon driving ability, a new accredited driving assessment service will begin operation in March 2017 to serve the Cheshire and Wirral regions.
Supported by The Department for Transport this new venture will be staffed by a team of experienced Occupational Therapists and Driving Advisers to ensure the most complete and robust assessment of cognitive, visual and physical abilities in relation to an individuals’ practical Fitness to Drive.
As an accredited member of Diving Mobility (www.Drivingmobility.org.uk), Chester Driveability is able to deliver assessments on behalf of DVLA, Motability and health professionals who are advising on the Fitness to Drive of individual patients.
Chester Driveability will be operated by The Wales Mobility and Driving Assessment Service (www.wmdas.co.uk) who have over 25 years’ experience of assessment of Fitness to Drive on behalf of DVLA, health professionals and individual service users.
Never a Dull Moment When We Fly by Derek Garner
I have just returned from my fifth holiday in New Zealand visiting my son and his family.
I have always had problems with the transfer to and from my wheelchair to and from the aircraft seat and have suffered as a result and have always spoken to the companies at length to explain my needs with very limited success. This time I picked Qantas as a result of a website promoting wheelchair friendly travel. I spoke to Qantas staff and explained my situation and also my interest in their new Eagle hoist. At every stop on my journey I was met by staff who had obviously been told about my flight and were expecting me. I was handled with courtesy and respect and was looked after at all times.
Several staff members pointed out to me, unprompted, that they no longer used the hoist as two strong men were more efficient, which proved to be the case. Dubai was my worry after a bad experience there some years ago but they were excellent with one man allocated to my care during the time I was there. At Heathrow a special transporter machine was brought to the plane and I was moved from the plane via this machine from Term 3 to Term 5 by Gary and Omar. Brilliant. In the flight from Sydney to Heathrow on an Airbus 380 my wife and I finished up with two seats on the middle block of four the other two were unoccupied by accident or design, so my wife could lay down and have a sleep.
It was obvious to me that Qantas had told their staff at all points where I was due to be, of my disability. This is really all I have ever asked airline companies to do but Qantas actually have done it and I will use them again and would certainly recommend them.
The BA shuttle from Manchester was 90 minutes late leaving so we missed our Qantas connexion at Heathrow. Fortunately we were eventually offered a Virgin Atlantic flight to Auckland via Shanghai.
When we got to the plane my wife was told that they had found two seats together and we were put into business class. Ten hours in luxury, my how the other half live. We had a very pleasant trip I can assure you.
I have been to New Plymouth in New Zealand five times and the last leg from Auckland is in a twin prop small plane accessed from the runway. They transfer me from my chair onto the aisle chair on the runway then push me into a cage attached to a fork lift truck. They then raise the cage to the entrance of the plane and push me in. Sounds odd but it does work very well. Reverse the procedure at New Plymouth. Apart from losing both our suitcases, the flight there and back were as good as it gets if you are in a wheelchair. I can’t praise Qantas enough for their attention to detail.
Upgraded to Business class, presented with champagne and a large single malt, hoisted on a fork lift truck, lost cases, missed flights.
Never a dull moment when we fly.
I have always had problems with the transfer to and from my wheelchair to and from the aircraft seat and have suffered as a result and have always spoken to the companies at length to explain my needs with very limited success. This time I picked Qantas as a result of a website promoting wheelchair friendly travel. I spoke to Qantas staff and explained my situation and also my interest in their new Eagle hoist. At every stop on my journey I was met by staff who had obviously been told about my flight and were expecting me. I was handled with courtesy and respect and was looked after at all times.
Several staff members pointed out to me, unprompted, that they no longer used the hoist as two strong men were more efficient, which proved to be the case. Dubai was my worry after a bad experience there some years ago but they were excellent with one man allocated to my care during the time I was there. At Heathrow a special transporter machine was brought to the plane and I was moved from the plane via this machine from Term 3 to Term 5 by Gary and Omar. Brilliant. In the flight from Sydney to Heathrow on an Airbus 380 my wife and I finished up with two seats on the middle block of four the other two were unoccupied by accident or design, so my wife could lay down and have a sleep.
It was obvious to me that Qantas had told their staff at all points where I was due to be, of my disability. This is really all I have ever asked airline companies to do but Qantas actually have done it and I will use them again and would certainly recommend them.
The BA shuttle from Manchester was 90 minutes late leaving so we missed our Qantas connexion at Heathrow. Fortunately we were eventually offered a Virgin Atlantic flight to Auckland via Shanghai.
When we got to the plane my wife was told that they had found two seats together and we were put into business class. Ten hours in luxury, my how the other half live. We had a very pleasant trip I can assure you.
I have been to New Plymouth in New Zealand five times and the last leg from Auckland is in a twin prop small plane accessed from the runway. They transfer me from my chair onto the aisle chair on the runway then push me into a cage attached to a fork lift truck. They then raise the cage to the entrance of the plane and push me in. Sounds odd but it does work very well. Reverse the procedure at New Plymouth. Apart from losing both our suitcases, the flight there and back were as good as it gets if you are in a wheelchair. I can’t praise Qantas enough for their attention to detail.
Upgraded to Business class, presented with champagne and a large single malt, hoisted on a fork lift truck, lost cases, missed flights.
Never a dull moment when we fly.
Alicante Holiday August 2016 by Dawn Wilbur
Hi lovely people!
I’m Dawn…a little bit about my life with the Neuromuscular Centre which has played a major role for the past 22 years …. in a positive way, I hasten to add. I moved to Cheshire from Kent (my husband and I did not know a soul in Cheshire – scary!) and fortunately discovered the NMC - situated only 4 miles away! Lynne Groves, Gordon Styles, Woolley and Cundall family (“the originals”) soon made us feel welcome and had me organized with physiotherapy sessions (cannot express how euphoric those treatments felt considering I had not received any physiotherapy for 19 years prior!)….hydrotherapy, office work, fundraising events and incredible, lifelong, friendships soon blossomed :) with many, many more amazing friends connected to this unique, innovative centre of excellence!
Anyway, if anyone is still awake! ..…I’d like to tell you the practicalities/niceties of my holiday experience to Alicante in August 2016; from a mother of a teenager (woteva!) point of view … oh, also, forgot to mention! I use a dual controlled, powered wheelchair for mobility and hoists for transfers – here goes…
Alicante is the capital of the Costa Blanca with a mixture of historic buildings, beautiful beaches and serene harbour.
A superb shopping centre with a huge choice of fashion shops, department stores, restaurants, and bars. 90% of the Cathedral can be viewed from a chilled, seated, eye level. Santa Barbara Castle overlooks spectacular views of the City and Mediterranean Sea - accessible via a levelled tunnel and manned lift. Beaches have wooden slatted ramps for wheelchair/pushchair access and one beach has special aqua-chairs to take you in to the sea.
We stayed at a Melia Hotel TRYP Alicante Gran Sol - accessible rooms which catered for medium sized wheelchairs, lifts were not very particularly spacious, restaurant and all employees were extremely helpful when required.
MobilityEquipmentHireDirect.com T: 0800 994 9000 hired a portable hoist for hotel which was in situ on arrival.
WheelchairAccessibleHolidayTaxis.com T: 0800 622 6000 transfers ran smoothly: driver extremely helpful (took my headrest on the airplane)… dread being bobbed around in the back of a taxi like a nodding canine.
Manchester T3 changing room is at departures only (as far as I know) gate 53 around or that area. I am flying in June so I am trying to liaise with airport access team to provide a portable hoist for arrivals.
Home Farm Holiday Park Anglesey by Karen Pritchard
Set in scenic countryside on the East coast of the Isle of Anglesey. Located in a tranquil and quiet setting well away from any roads, making it extremely suitable for safe family holidays, yet only 5 minutes from several sandy beaches and stunning coastal walks.
Last year we purchased a caravan to travel on our holidays and short breaks during this year.
I have been to Home Farm a couple of times and I feel I must share this little gem of a place.
We try to locate our caravan near the disabled facilities, which are lovely and clean - the bathroom I visited, consisted of a shower area, toilet and sink. It is very spacious and very warm. They do provide a chair to sit on whilst showering but I would enquire about a sturdier chair if you require this.
On booking, I would confirm that all your needs are met. There have been times I have not done this at locations, and it’s a stress you don’t need whilst trying to enjoy your holiday.
Park Facilities
- Reception with an extensive supply of tourist literature plus a basic essentials and accessory shop
- Wifi
- Luxury award winning toilets - with free hot showers, hair dryers, separate disabled and toddlers and baby areas
- A fully equipped laundry room, with automatic washer, drier and iron
- Dish-washing sinks with free hot water.
- Electric hook-ups (16 amp)
- Safety surfaced outdoor/indoor adventure play area with TV and pool tables • Outdoor recreation and ball game area
- Tennis Court
- Pitches ranging from grass to gravel - and from basic electric to the fully serviced pitches
- Extensive off-site exercise area for dogs
- Free ice pack service
- Motorhome service station
- Park monitored CCTV system
- Secure barrier entry/exit
- Tourer storage with tow on/off facility
As a family, we enjoy the luxury of the quiet and rural setting.
New York - Here We Come by David Tucker
My wife has always wanted to go to New York, we have been to Florida but never the Big Apple.
We discussed our holidays and thought lets go for it. I have never taken a wheelchair on a plane before, but I booked my power chair on and away we went. I booked business class, and was worried about getting out of the seats. My condition is a weakening of the thighs and arms so it is difficult to rise from a sitting position. I have an up easy seat assist which I put in my power chair and I used this on the aircraft seat. It was a bit uncomfortable but I managed the 7hr journey ok.
On arrival at JFK I was met with my chair and assisted through homeland security. We had booked an adapted transfer vehicle for me and my chair, and taken to our hotel in Times Square. We were amazed at Times Square, the lights, noise etc . The accessible room in the Hilton, where we were staying was nothing special, only 1 pull down grab rail at the side of the toilet, disappointing, but I managed with my wife’s help.
The following morning we went across to the local Diner, for breakfast, wow more like
breakfast, lunch and tea all on one plate. We signed up for an open top bus tour 3 days for the price of 2. On checking this I found that most of the Buses had an automatic ramp that came out of the bus entrance for wheelchairs prams etc. This made life easy and we visited the Rockefeller Centre, Grand Central Station, and Central Park. We visited the John Lennon Memorial Strawberry Fields in Central Park, which was very moving. The tour also took us to the Empire State Building and we enjoyed the views from the top. I was advised to book the trip to the Statue Of Liberty and Ellis Island in the UK which I did and it was a good job i did as the queues for the Ferry went on for ever.
Another visit was to the Ground Zero memorial and this is a must for anyone visiting New York. We also managed to take in 3 Broadway Shows courtesy of reduced ticket prices via the half price ticket booth on Times Square. We were told to go to the front of the queue which we did and so had first pick of the shows.
We both fully enjoyed the trip, the locals were very respectful of me in my power chair and always insisted I went to the front of the “Line” as they call the queue. The only disappointment for me was that they didn’t have separate disabled toilets. They had disabled toilets, sure but these were either in the men’s or ladies, and this was a problem when I needed assistance from my wife, we had to get a security guard to stand in front of the main door and not let anyone in until we had come out.
We thoroughly enjoyed the week, the October weather was kind to us and apart from the traffic chaos everything went well despite our previous concerns and we can recommend the trip.
Where next to you might add, well we have booked a 2 week cruise in the Baltic ending up in St Petersburg in July so watch this space.
Useful Products - At Home
Hands free hairdryer stands
If you have difficulty holding a hairdryer this convenient stand holds the hairdryer steady with a flexible neck that can be adjusted to any angle from its tabletop base. An alternative version has a flexible arm and a strong sucker that can stick to your bathroom mirror.Shampoo Hair Funnel
Designed for washing hair in an upright position if you have difficulty tilting your head back.Wheelchair Umbrella
Being in a wheelchair it is easy to get caught out in a rain shower or in bright sun with no shade, but with this compact umbrella shelter is always at hand.
TP-Link Smart Plug HS100 Wi-Fi
This can be used from a smart phone or Alexa to operate lights or other appliances at home.Our thanks go to Jane Bradley and Stephen Clough for these suggestions.
Useful Websites - Days Out
Knowsley Wildflower Centre They state visitors are very welcome to bring a carer to assist them free – but to make the best of your visit, please contact them in advance www.nwc.org.uk
National Trust Their admission policy admits a necessary companion, or carer free of charge. ‘Access for All Admit One Card’ can be applied for and allows a carer free entry to support a person with a disability.
National Express Their Disabled Coachcard offers a great way to save 1/3 on standard fares to hundreds of UK towns, cities and airports. The majority of the fleet have a passenger lift, but you should contact them at least 36 hours before travelling. www.nationalexpress.com/offers/ coachcards/disabled-coachcard.aspx
Toll Concessions You may be able to pay a reduced rate or nothing at some river crossings, bridges and tunnels if you’re disabled. In most cases, you have to apply in advance to get a concession. www.gov.uk/driving-medicalconditions/toll-concessions
Rough Guide to Accessible Britain A free, online guide including over 200 inspiring ideas for worry-free days out, reviews, hints and tips by disabled visitors. Provides lots of accessibility information including disabled parking www.accessibleguide. co.uk
Bruce Trust Specially adapted canal holidays on the on the Kennet and Avon Canal, which flows through Berkshire and Wiltshire www.brucetrust.org.uk
National Trust Their admission policy admits a necessary companion, or carer free of charge. ‘Access for All Admit One Card’ can be applied for and allows a carer free entry to support a person with a disability.
National Express Their Disabled Coachcard offers a great way to save 1/3 on standard fares to hundreds of UK towns, cities and airports. The majority of the fleet have a passenger lift, but you should contact them at least 36 hours before travelling. www.nationalexpress.com/offers/ coachcards/disabled-coachcard.aspx
Toll Concessions You may be able to pay a reduced rate or nothing at some river crossings, bridges and tunnels if you’re disabled. In most cases, you have to apply in advance to get a concession. www.gov.uk/driving-medicalconditions/toll-concessions
Rough Guide to Accessible Britain A free, online guide including over 200 inspiring ideas for worry-free days out, reviews, hints and tips by disabled visitors. Provides lots of accessibility information including disabled parking www.accessibleguide. co.uk
Bruce Trust Specially adapted canal holidays on the on the Kennet and Avon Canal, which flows through Berkshire and Wiltshire www.brucetrust.org.uk
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.
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.
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;
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.
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.
Help with your Energy Supply
Signing up with the Priority Services Register for older and disabled people available in England entitles you to a range of support such as advance notice if your supply is going to be interrupted and priority reconnection if your supply is interrupted. If they cannot connect you they will provide alternative facilities for cooking and heating if your supply is interrupted. If you own your own home you may be entitled to annual gas safety checks and they can also provide advice about being more energy-efficient.
If reading your meter is difficult they will move your meter free of charge or provide a free quarterly meter reading and if it helps copies of the bill can be sent to a relative, carer or friend. They will register you with a password protection scheme to keep you safe and protect you from cold callers. To sign up to the PSR you will need to contact your supplier. Remember if you have different suppliers for gas and electricity, you’ll need to call them both and you’ll need to register again if you change your energy supplier.
If reading your meter is difficult they will move your meter free of charge or provide a free quarterly meter reading and if it helps copies of the bill can be sent to a relative, carer or friend. They will register you with a password protection scheme to keep you safe and protect you from cold callers. To sign up to the PSR you will need to contact your supplier. Remember if you have different suppliers for gas and electricity, you’ll need to call them both and you’ll need to register again if you change your energy supplier.
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.
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.
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.
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