An article entitled “Gastrocnemius medialis muscle architecture and physiological cross sectional area in adult males with Duchenne muscular dystrophy” (published in the Journal for Musculoskeletal and Neuronal Interactions) is the first publication of the collaboration between Manchester Metropolitan University’s (MMU) Institute of Performance Research and NMC. It is based upon data collected in the summer of 2014 and is the first investigation of muscle size in adults with Duchenne MD that has been published to date. It demonstrated that the DMD participants had significantly smaller muscle cross-sectional area compared with unaffected adults.
This data is unique – it has not been previously published in an adult population. Much of the current literature describing populations of people with MD has been undertaken in paediatric individuals and there is a lack of quality research into the effects of physiotherapy in particular. NMC is uniquely placed to contribute to this field of research.
NMC provides on-going physiotherapy to over 200 people, with many more attending for specialist assessment. Presently, this therapy is largely guided by client feedback and collaborative goal-setting, in addition to decades of experience, rather than hard evidence. Health professionals in other settings do not have access to the same level of expertise; they need data highlighting best practice.
Already there is further work being planned and undertaken at NMC. Publication of another article describing bone mineral density and physical activity in MD individuals is due hopefully in the next few months. A fulltime PhD student from MMU – Matt Jacques - is due to complete data collection for a study describing resting calorie use in MD individuals by the end of the year. Matt will also be collecting data for his PhD project studying the immediate effects of physiotherapy in MD individuals.
In addition to this, Michael Andrews – a Master’s student at Chester University – has completed data collection for his study into exercise in Duchenne MD. The most critical component in the success of this publication is the NMC’s service users and their support network – to everyone who has participated in the recent projects I would like to extend heartfelt thanks. There is presently a real opportunity for NMC to be part of the production of significant pieces of research in an area demanding investigation and that is cause for tremendous excitement. Direct link: http://www.ismni. org/jmni/pdf/60/05MORSE.pdf
Different conditions, different backgrounds and different experiences.
Monday 30 November 2015
Do You Want To Be A Guinea Pig - Participating In Research
It quickly became apparent to me at the Neuromuscular Centre that their work encompasses numerous conditions and most of them are rare. There are many gaps in the understanding of musclewasting conditions and a lack of treatments. Research is essential for understanding the causes, trialing things that can have a benefit and ultimately in finding effective treatments. Progress often happens in tiny increments and we don’t know whether or not effective treatments will come in our lifetime. Many that I have spoken to are interested in our conditions and for a range of reasons would like to be involved in research projects.
I recently met with David Tucker who is taking part in a drugs trial to look at a possible treatment for the condition he has, Sporadic Inclusion Body Myositis. Research is not always drugs trials, and there are many observational studies.
How did David get onto the research programme? His story began when David moved to Salford Hospital, as he felt that his previous clinic did not have the expertise or knowledge of his condition. On his first visit he was asked if he would participate in a new research project. He readily agreed and within a few weeks he was back to start the process. For many people it is something that they bring up with their Consultant who should be able to link them into current and active research projects.
What was the process? The initial screening determined that David was a suitable candidate for the research. There were a range of criteria and tests, such as a DEXA “dual energy X-ray absorptiometry” scan used to measure bone density, which could have ruled him out at this stage. David matched the qualifying criteria on all counts.
Next came the baseline tests to measure his muscle strength, these have been repeated periodically through the study and measure any changes in David’s strength.
In David’s trial the drug is given as an infusion. Every few weeks David has to travel to Salford for two consecutive days, a round trip of over 160 miles. The first day he arrives and is simply weighed before leaving. He explained that the reason is that the pharmacists take a day to make up the infusion specifically to his weight. While frustrating, David accepts this as essential to ensure the integrity of the study.
This is a major international study and Novartis, the drugs company, will be spending many millions on this research. They willingly pay all out-ofpocket expenses for David and a carer, including travel, food and accommodation. For the first infusion David and his wife stayed in a hotel, however he now prefers to travel daily.
Was the research a positive experience? David had just had his penultimate infusion but he hasn’t noticed any difference in his abilities throughout the study. He isn’t discouraged about this as he explained that he doesn’t know whether he is getting the drug or not. There are four groups of participants, three are receiving infusions in different doses and the last is a control group receiving just a placebo. No one knows, other than those doing the analysis, which group they are in, including the medical staff. This secrecy is so strictly controlled that two different pharmacists are involved in the preparation and the mixing of the infusion so that even they can have no knowledge of the end dose.
I asked what motivated David to be involved in the research. “ I want to help in any way I can, in the hope that it will give faith and be of help to future sufferers.”
Following the end of the trial all the participants will continue to receive infusions at the same dose until the results of the research are confirmed and if the drug is licensed . It is hoped that it will be as soon as next year. They will then receive infusions with the drug at the optimum dose, so hopefully all could benefit directly from participating in the study.
This study has required an enormous time commitment for David, but he is very positive about the experience “Although I think I am on the Placebo I am finding it a worthwhile and very interesting experience being on the Trial and obviously hope that it will benefit myself also.”
Going to University
My first year at the University of Southampton has been the best of my life so far. The step to university from school or college is a big one because it’s often your first time living away from home and the learning style is totally different to school with a much greater emphasis on independent learning.
University life is about a lot more than the course too, I’d say that being part of societies is definitely as important as your course itself because they’re a great way to meet others and try new skills. I’m lucky enough to be both studying Aerospace Engineering at the University of Southampton and also to be Factual Executive for SUSUtv, the University’s student TV station. This role has seen me produce a documentary on the Spitfire which provided me with the opportunity to interview a real Spitfire pilot, something which I definitely did not think I would be doing when I started University! I’m also fortunate enough to have been elected as a Course Representative for my year group too which involves representing the views of students to Faculty staff. Now the reason for me mentioning these experiences of mine is that, being both Factual Executive and Course Representative, communicating to groups of people is absolutely crucial, whether that be a video production team or the year group on the course. Without being in Facebook groups I doubt that I’d be able to do this as they are such an effective means of communication. They also provide a wonderful open environment to discuss ideas as well as meaning that you are always contactable.
So how is this relevant to the NMC? During this summer 2015 I was fortunate enough to have the opportunity to volunteer here and part of that included setting up a Facebook group in order to provide an open forum for discussion on the topic of moving to University. Having had such a great experience at University this year I do truly feel that other people who have muscular dystrophy such as myself should have the opportunity to attend University. This is the purpose behind the Facebook
group, allowing everyone to make a well informed choice about their future. The group is open to everyone at the NMC, whether you’re looking to go to University, are currently there or have finished your degree it’s the ideal place to find out about all aspects of University life or help those looking to go. The group is only visible to members so it is a totally secure place for an open and honest discussion.
Of course the most important aspect of any group is the people in it so if you are looking to go to University, are there or have been in the past, this is definitely the group for you. To join the group you need to be registered on Facebook and search for “NeuroMuscular Centre University Discussion Group”. If the group doesn’t come up go to the top menu and click on the MORE tab, then click the GROUPS tab. The link has a button where you can request to join.
University life is about a lot more than the course too, I’d say that being part of societies is definitely as important as your course itself because they’re a great way to meet others and try new skills. I’m lucky enough to be both studying Aerospace Engineering at the University of Southampton and also to be Factual Executive for SUSUtv, the University’s student TV station. This role has seen me produce a documentary on the Spitfire which provided me with the opportunity to interview a real Spitfire pilot, something which I definitely did not think I would be doing when I started University! I’m also fortunate enough to have been elected as a Course Representative for my year group too which involves representing the views of students to Faculty staff. Now the reason for me mentioning these experiences of mine is that, being both Factual Executive and Course Representative, communicating to groups of people is absolutely crucial, whether that be a video production team or the year group on the course. Without being in Facebook groups I doubt that I’d be able to do this as they are such an effective means of communication. They also provide a wonderful open environment to discuss ideas as well as meaning that you are always contactable.
So how is this relevant to the NMC? During this summer 2015 I was fortunate enough to have the opportunity to volunteer here and part of that included setting up a Facebook group in order to provide an open forum for discussion on the topic of moving to University. Having had such a great experience at University this year I do truly feel that other people who have muscular dystrophy such as myself should have the opportunity to attend University. This is the purpose behind the Facebook
group, allowing everyone to make a well informed choice about their future. The group is open to everyone at the NMC, whether you’re looking to go to University, are currently there or have finished your degree it’s the ideal place to find out about all aspects of University life or help those looking to go. The group is only visible to members so it is a totally secure place for an open and honest discussion.
Of course the most important aspect of any group is the people in it so if you are looking to go to University, are there or have been in the past, this is definitely the group for you. To join the group you need to be registered on Facebook and search for “NeuroMuscular Centre University Discussion Group”. If the group doesn’t come up go to the top menu and click on the MORE tab, then click the GROUPS tab. The link has a button where you can request to join.
Thank You Sue - We Will Miss You
Word flies around the NMC...’What, leaving us! It must be just a rumour!’’. Sue laughs. “Well” she says “I am reaching that certain age now, and can’t be here forever! “ Sue’s role within NMC has changed tremendously over the years. She has managed to bring a whole new meaning to ‘support worker’, not just supporting people with neuromuscular conditions, but also their carers. She has the ability to listen and bring out the needs of a person in order to provide appropriate assistance, so what does she attribute this to? “ Instinct”’ she says. “I think some instincts are natural, but I think years of working at the NMC gives experience to understand what people and carers are coping with”. She has been their point of contact, bringing together help from everyone in the NMC community. “ I couldn’t do this alone.”
Sue’s great ability is to be able to think outside the box, and one of her proudest achievements is that of the Retreat. “ When people come to the NMC for the first time, they are often very worried, having been given a diagnosis which it is difficult to learn anything about. They also have to deal with a vast array of emotions - not just their own but also their families. They need somewhere to off-load, away from the Centre. It is good to have a quiet place, with beautiful grounds surrounding it. Just to sit back, take a deep breath and so face the world again.”
“I’m a very practical person, and realise that people need practical things in place in order to move forwards. This ranges from equipment and adaptations to benefits, work and volunteering, using skills they already have or learning new ones. Finding these things can be very difficult but when we work together as we have in the shed club then practical skills can be used with others who have been on the same journey.”
“The hardest part of the job?” Sue has no hesitation. “It’s losing friends and colleagues. This has a ripple effect not only on colleagues but also their families. I have to support people in a professional way but also deal with my own feelings. The emotional toll is difficult but at the Centre everyone is willing to give a bit of themselves to support others and on balance we have more laughs and positive experiences.”
So what does the future now hold for Sue? “ Well’ I’ve just moved house, so there are things to do there,” she says, “and I plan to spend more time with my family.......there’s my Mum, and my sister and of course there’s Mike and our children and grandchildren. I love art and used to print and embroider pictures in the past so it will be lovely to take this up again. I also love to travel - I’m not a beach person, but we have lots of friends in various countries around the world who we are planning to visit. I am also hoping that we will have time for ourselves”. Hm, lots of sitting around then!
Final words on the Centre? “I realised it would be difficult whenever I chose to retire, but it was important that support services would continue with a good cross-over. Denise has settled well and we have until Christmas for her to further settle. I have loved my time here and can’t imagine not working at the NMC, but I’ve not moved too far away and so will keep in touch. I’ve met some amazing people - people with this condition are some of the strongest people I know, getting on with life and so motivating me”.
Sue’s great ability is to be able to think outside the box, and one of her proudest achievements is that of the Retreat. “ When people come to the NMC for the first time, they are often very worried, having been given a diagnosis which it is difficult to learn anything about. They also have to deal with a vast array of emotions - not just their own but also their families. They need somewhere to off-load, away from the Centre. It is good to have a quiet place, with beautiful grounds surrounding it. Just to sit back, take a deep breath and so face the world again.”
“I’m a very practical person, and realise that people need practical things in place in order to move forwards. This ranges from equipment and adaptations to benefits, work and volunteering, using skills they already have or learning new ones. Finding these things can be very difficult but when we work together as we have in the shed club then practical skills can be used with others who have been on the same journey.”
“The hardest part of the job?” Sue has no hesitation. “It’s losing friends and colleagues. This has a ripple effect not only on colleagues but also their families. I have to support people in a professional way but also deal with my own feelings. The emotional toll is difficult but at the Centre everyone is willing to give a bit of themselves to support others and on balance we have more laughs and positive experiences.”
So what does the future now hold for Sue? “ Well’ I’ve just moved house, so there are things to do there,” she says, “and I plan to spend more time with my family.......there’s my Mum, and my sister and of course there’s Mike and our children and grandchildren. I love art and used to print and embroider pictures in the past so it will be lovely to take this up again. I also love to travel - I’m not a beach person, but we have lots of friends in various countries around the world who we are planning to visit. I am also hoping that we will have time for ourselves”. Hm, lots of sitting around then!
Final words on the Centre? “I realised it would be difficult whenever I chose to retire, but it was important that support services would continue with a good cross-over. Denise has settled well and we have until Christmas for her to further settle. I have loved my time here and can’t imagine not working at the NMC, but I’ve not moved too far away and so will keep in touch. I’ve met some amazing people - people with this condition are some of the strongest people I know, getting on with life and so motivating me”.
Finding Accessible Toilets
There are currently over 750 toilets access the UK listed on the site and they are constantly adding more sites. The database includes information about the type of location, if there are restrictions on who can use the toilet, the opening hour as well as details about the room and the equipment. The site can also direct you for hiring a mobile toilet facility for events.
The database includes information about the type of location, if there are restrictions on who can use the toilet, the opening hours the room and the equipment.
www.changing-places.org
Want to kick started your career in Graphic design?
Our main goal is to provide a unique service that is an alternative to a main stream college environment. Students receive full care and one-to-one training in a fully adapted training suite. We encourage students to reach their full potential and they are able to work at their own pace. Learning is very much forced around the individuals needs and requirements. We are proud to offer our students a warm and friendly place to study. All courses are completely free and no previous experience or qualifications are required for any of the courses. Participants should have a general interest in graphic design and design software programs.
Taster sessions for any of the courses are always offered to see whether it really meets your needs and requirements. When you come for assessment we will work with you to identify the appropriate start date, duration, level of study and content which will help you achieve your personal goals. Study At Home The Neuromuscular Centre (NMC) also offers a home study programme. The NMC is looking to recruit graphic design students with muscular dystrophy who have the enthusiasm and motivation to Study at home. We offer NFCE Level 1 & 2 in Graphic Design as a home study option. Our tutors are available for online support three days a week and use the latest software to ensure all home study students are fully supported throughout their course.
What’s Next
Once students gain a national recognized qualification it can lead to many new and exciting opportunities, such as:
- Progressing onto another course to gain an even higher level qualification at the NMC or at college or university.
- Gaining employment in a Graphic Design company.
- Gaining employment in NMC’s own NMC Design+Print - our very own in house commercial graphic design and print company.
- Freelance Designing - maybe working from home.
If you would like more information please contact Kay on 01606 860911or e-mail kay.briggs@nmcentre.com
Maintaining Safe Mobility through Regular Review
The Mobility Service aims to support individuals to return to driving or to continue driving in safety and will help you identify the most suitable type of vehicle controls and vehicle access systems for your needs.
If you travel as a passenger and need to remain in your wheelchair The Wales Mobility and Driving Assessment Service will be able to offer advice and guidance regarding the equipment and vehicle features essential to your needs.
The Wales Mobility & Driving Assessment Service is a registered charity and receives additional funding from The Welsh Government. The Charity operates across Wales, with The North Wales Centre being based at Glan Clwyd Hospital in Denbighshire. The team at The Wales Mobility & Driving Assessment Service have extensive experience of helping drivers and passengers remain safely mobile and will be able to help you achieve a safe long-term mobility solution.
If you experience a progressively changing medical condition it is essential to undertake regular review of your driving to ensure you have the most suitable form of vehicle controls for your safe and comfortable driving.
During a driving assessment we can review your current physical abilities as a driver and explore the wide range of vehicle control options available to you to ensure you have the most appropriate, easy to use and safe driving controls available.
With advances in vehicle technology it is becoming increasingly possible to remain safely driving, despite changes in strength levels or a reduction in your range of physical movement.
The team at The Wales Mobility & Driving Assessment Service will discuss all options available to you and then offer you an in-vehicle assessment using our extensive range of adapted vehicles.
During assessment we will help you to also consider your access needs into the vehicle and will explore the most suitable option to allow you to enter the vehicle and to stow your wheelchair, if applicable.
If you travel as a passenger we can help you consider the safest and easiest method of entering the vehicle, either whilst transferring onto a passenger seat or by remaining in your wheelchair whilst travelling. The Mobility Service has a wide range of equipment and vehicle types that can reduce or eliminate the physical effort involved during transfer into a vehicle.
The Mobility Service also provides a free information and advice service and can advise on a range of issues including DVLA, Motability, vehicle funding, driver tuition, vehicle adaptation and much more.
So, if you experience progressive changes to your physical ability we can help you monitor these changes and find solutions that allow you to continue driving safely and in comfort.
The Wales Mobility & Driving Assessment Service can be contacted on: Tel: 01745 584858 E mail at: mobilityinfo@btconnect.com. Further information is also available at:www.wmdas.co.uk In the next edition of One Voice Sanjay Vaja reports on his experience of the reassessment
Mindfullness
Hi everyone. My name is Jonathan Brough and I’ve been lucky enough to have been supported by the NMC for quite a few years now. Over the years there were times when I struggled to come to terms with things, and worried about what the future held for myself and my family. To a degree I experienced a level of anxiety and depression connected to this. As a registered nurse, about five years ago I was introduced to mindfulness. Mindfulness is a life skill which involves paying attention to what is occurring in the present moment, instead of worrying or stressing about something that’s happened before or what may happen. It engages all our senses as we become aware of our body, emotions, thoughts and our environment. For the last 5 years I have continued to practice mindfulness with Breathworks, which has developed a mindfulness programme helping people to better manage their health conditions, pain, and stress. I have recently completed my training to become an Accredited Breathworks trainer. I know how much mindfulness has helped me to come to terms with my condition, and I know that it can help others like me. I’ve discussed the possibility of me providing some mindfulness training for the NMC. This could be for those who are being supported by the NMC regarding their own condition, their carers, or staff. To give people a better understanding of what mindfulness is I’m hoping to run some mindfulness taster sessions at the NMC. So that it can be properly planned I need to have an idea of how many people would be interested. If you would like to take part in a two hour session in the new year, please contact me at jonathanwithbreathworks@ gmail.com to express your interest. If you want to know more about Breathworks mindfulness training please look at their website at http://www.breathworksmindfulness.org.uk/
Winter Vaccinations
It seems to have come around so quickly, but it is that time of year again when we need to start thinking about the winter flu jab.
It is important to have ourselves vaccinated as we are more susceptible to catching the flu and to its repercussions.
It is also important for people who care for us to consider the jab too. This protects us and them from possible infection. The flu vaccine is available free on the NHS for:
It is important to have ourselves vaccinated as we are more susceptible to catching the flu and to its repercussions.
It is also important for people who care for us to consider the jab too. This protects us and them from possible infection. The flu vaccine is available free on the NHS for:
- Anyone who is over the age of 65
- Pregnant women
- Anyone who is overweight (with a body mass index over 40)
- Children and adults with and underlying health condition (particularly long term heart or lung disease) Children and adults with weakened immune systems
- An annual flu vaccine nasal spray is also now offered to healthy children aged two, three and four years old, and to children in school years one and two.
The best time of year to have the vaccine is in the autumn, between September and early November. There is no actual deadline but, where possible, you should be vaccinated before flu starts circulating in the community.
Serious side effects of the flu vaccine are very rare. You may have a slight temperature and aching muscles for a few days after having the jab, and your arm may be a bit sore where you were injected. The pneumococcal vaccine A pneumococcal infection can affect anyone. However, some people need the pneumococcal vaccination (pneumo jab) because they are at higher risk of complications. These include:
- All children under the age of two
- Adults aged 65 or over
- Children and adults with certain long-term health conditions, such as a serious
heart or kidney condition - This vaccine is not given annually, like the flu jab
- People with a long-term health condition may need just a single one-off pneumococcal vaccination or five-yearly vaccination depending on their underlying health problem
Some flu facts:
- The flu jab can’t give you flu
- The flu jab is perfectly safe
- The flu virus changes, so you need a flu jab every year
- If you are pregnant, the flu jab doesn’t harm your unborn baby. In fact it can protect your baby from flu for the first few months of life
- The flu jab also protects against swine flu
- Washing and drying your hands properly can play an important part in preventing the spread of infection. Disposing of used tissues properly can also help prevent it spreading.
Hydrotherapy - Karen Pritchard
Hydrotherapy is a programme using the properties of water to improve function, carried out by Physiotherapists in a purpose built and correctly heated and equipped hydrotherapy pool. We are lucky to benefit from this facility here at the Neuromuscular Centre as such, for we have the use of the hydrotherapy pool at the nearby Hebden Green School. Hydrotherapy is good for us because it:
- Reduces muscle tightness and relieves pain
- Rehabilitates injured muscles and joints by increasing blood flow and speeding up the healing process
- Provides a safe environment in which to mobilise and exercise people with MD • Provides relaxation and stress relief.
Another important benefit to hydrotherapy is that we are gaining social interaction with others, and also psychological well being. Social isolation can be a problem if you are not getting out of the house and meeting people. It can be good to talk with others that are more often than not are living with the same issues as you!
It is only recently I have really embraced hydrotherapy. It seemed to be a chore for me and hard work getting undressed/dressed but the benefits far outweigh this. I feel relaxed in the pool. I’m able to switch off from things that are weighing on my mind. I also have exercises that I can get on and do. I feel a real sense of achievement after my session, and I sleep much better after it too!
If you have not tried out our hydrotherapy sessions why not speak to one of our team of physiotherapists. They can discuss what benefits hydrotherapy will have for you. Also, why not try your local pool. Contact them and find out what disabled facilities they have to offer. Your local pool will probably not be as warm as the pool here at Hebden Green, but I find it relieves my stress just being in the water. I just don’t stay in the pool as long!
Did you know... The increased blood flow and circulation of white blood cells around the body allows lymph — an immune system fluid (that helps get rid of unwanted materials from the body) to be moved through the body more efficiently and therefore strengthens the immune system to fight colds and illnesses.
Aromatherapy at the Neuromuscular Centre - Beverley Langley
Hello! My name is Beverley and I run the Complementary Therapy Clinic at the NMC. One of the therapies I practice is Aromatherapy. Aromatherapy can be traced back to 3,500 years B.C.. At that time it was linked to aromatic medicine which was associated with religion and magic. Ancient Egyptians burnt incense from woods, herbs and spices to honour their Gods and used Frankincense, Myrrh, Cinnamon, Cedarwood and Juniperberry to preserve the bodies of their Royalty in the afterlife.
Modern Aromatherapy uses natural oils extracted from various parts of a plant to enhance physical and emotional wellbeing. The oils may be extracted by distillation or cold pressing. Essential oils consist of tiny aromatic molecules that are absorbed via the skin thereby entering the bloodstream and being carried around the body to deliver their beneficial effects. When inhaling the aroma, a signal is sent to the limbic system of the brain which is the centre of emotions and memory and is directly connected to parts of the brain that control heart rate, blood pressure, breathing, stress, and hormone balance.
Essential oils are concentrated and must always be diluted by a qualified Aromatherapist into a carrier oil before being applied to the skin. Massage is most commonly associated with aromatherapy, but there are a variety of other methods that essential oils can be used including diluting the oils and adding them to the bath, by steam inhalation and diffusers.
Here at the NMC, I use aromatherapy for a variety of applications including pain relief, stress relief, mood enhancement and cognitive function. Each essential oil has its own properties that may give health benefits. Some oils are thought to have an anti inflammatory effect which may help with arthritis and muscular pain.
The therapeutic effects of essential oils together with massage can help relax and calm you and boost your wellbeing. I choose the oils that I feel may help manage your symptoms and help you the most. I also do a full consultation at your first visit to ensure there is no medical reason why you should not have aromatherapy. It is important not to use oils instead of taking prescribed medicines or seeing your G.P.
I am happy to see service users, carers and staff by appointment on Wednesdays and Thursdays. Please feel free to have a chat with me when I am not with a client or contact me on 07756853089.
Modern Aromatherapy uses natural oils extracted from various parts of a plant to enhance physical and emotional wellbeing. The oils may be extracted by distillation or cold pressing. Essential oils consist of tiny aromatic molecules that are absorbed via the skin thereby entering the bloodstream and being carried around the body to deliver their beneficial effects. When inhaling the aroma, a signal is sent to the limbic system of the brain which is the centre of emotions and memory and is directly connected to parts of the brain that control heart rate, blood pressure, breathing, stress, and hormone balance.
Essential oils are concentrated and must always be diluted by a qualified Aromatherapist into a carrier oil before being applied to the skin. Massage is most commonly associated with aromatherapy, but there are a variety of other methods that essential oils can be used including diluting the oils and adding them to the bath, by steam inhalation and diffusers.
Here at the NMC, I use aromatherapy for a variety of applications including pain relief, stress relief, mood enhancement and cognitive function. Each essential oil has its own properties that may give health benefits. Some oils are thought to have an anti inflammatory effect which may help with arthritis and muscular pain.
The therapeutic effects of essential oils together with massage can help relax and calm you and boost your wellbeing. I choose the oils that I feel may help manage your symptoms and help you the most. I also do a full consultation at your first visit to ensure there is no medical reason why you should not have aromatherapy. It is important not to use oils instead of taking prescribed medicines or seeing your G.P.
I am happy to see service users, carers and staff by appointment on Wednesdays and Thursdays. Please feel free to have a chat with me when I am not with a client or contact me on 07756853089.
Downhill Adventures - James Taubman Sit ski
During the summer at the Neuromuscular Centre, Disability Snow Sports came to give a demonstration of the “Sit Ski” and to give our clients here the opportunity to try it out at the centre. James was enthusiastic, and gave it a go! A few other people in our community also tried it out and enjoyed the very positive and informative demonstration.
James wanted to take this one step further, and a week later he had booked himself at the “Chill Factore” in Manchester to make his dream a reality! James tells me he had very little time to dwell on it which he felt was for the best!
James wrapped up warm in plenty of layers and went with his career to Chill Factore - His carer also went on the slope. The experience was a one hour session - up and down the slope roughly about eight to ten goes.
James was very confident as the staff at the Chill Factore made him feel comfortable and reassured him that his safety was paramount.
James was attached to a lift to take him to the top of the slope. He tell me he was nervous the first time but after this he was buzzing and was ready to go again ! James also had a guide behind him doing all the steering and manoeuvring. He soon got over his fear! He tells me It was an unforgettable experience.
James would highly recommend trying out the “Sit Skiing” at Chill Factore. He found it something out of the ordinary. He was also pleased that he could participate in this sport and take on the challenge and that his disability was not a barrier to him taking part in such an activity. James would like to take on a mountain and a skiing trip in the future! Go James - we look forward to hearing all about your next adventure!
James wanted to take this one step further, and a week later he had booked himself at the “Chill Factore” in Manchester to make his dream a reality! James tells me he had very little time to dwell on it which he felt was for the best!
James wrapped up warm in plenty of layers and went with his career to Chill Factore - His carer also went on the slope. The experience was a one hour session - up and down the slope roughly about eight to ten goes.
James was very confident as the staff at the Chill Factore made him feel comfortable and reassured him that his safety was paramount.
James was attached to a lift to take him to the top of the slope. He tell me he was nervous the first time but after this he was buzzing and was ready to go again ! James also had a guide behind him doing all the steering and manoeuvring. He soon got over his fear! He tells me It was an unforgettable experience.
James would highly recommend trying out the “Sit Skiing” at Chill Factore. He found it something out of the ordinary. He was also pleased that he could participate in this sport and take on the challenge and that his disability was not a barrier to him taking part in such an activity. James would like to take on a mountain and a skiing trip in the future! Go James - we look forward to hearing all about your next adventure!
Steve Bebe on the Radio
Many people have said over the years that you should be on the radio. How did you get the opportunity to be on the radio? I was asked by our Community Fundraiser Amy Swatkins to join her on the “Charities Today” show on RedShift Radio to talk about the NMC, and after the show I asked the presenter about how you go about becoming a DJ on RedShift. She told me to email Liz Southall who runs the radio station. So I emailed Liz and we arranged a meeting at the station to discuss what type of show I would like to do and straight away she offered me a time slot - which was fantastic. So I went back the following week for my training which including showing me how everything works and then I went on air for a short 20 minute trial, firstly talking to her on air and then leaving me on my own for about 10 minutes to play a couple of songs and do a few links, and then after that I was told i could start my own show!
What does it involve and what do you actually do? I present a community news and music show called ‘What’s Happening with Steve Bebe’ which initially started on a Monday afternoon between 2 and 3 pm before moving to a new slot. In my first few shows I spoke about the different areas of the NMC and now I talk about upcoming fundraising events every week. I also did a spot about Nantwich Cricket Club (where i do the cricket scoring) during the cricket season, talking about the previous weekends results. I promote events going on in Crewe and Nantwich and also Redshift Radio events and other Redshift shows.
What have you learnt? I’ve learnt how a radio station works and how to set up shows with music, hub sweepers (which play over the start over an intro to a song before the vocals start) commercials and community highlight news at the top of the hour. I’ve also learnt about how to speak properly on air including remembering to give time checks and learning how to talk over songs, especially how to get the fader levels right - all very technical and very radio geeky things...Haha!!
What do you get out of it? The opportunity to finally fulfil a boyhood dream to be a radio DJ, following in the footsteps of my radio heroes like Steve Wright, Mark and Lard, Terry Wogan and Chris Moyles. It’s a lot better than playing your tape cassettes and CDs at home while talking to yourself (which is exactly what I used to do as a kid....and in recent years using my iTunes if I’m being honest...Haha!!) Also the fact that I get the opportunity to spread the word about the fabulous work that we do here at The NeuroMuscular Centre.
Has it impacted other areas of your life? Like I said above, giving me the chance to talk about the work that I do at the centre, and also promote The NMC on radio, gives me a huge sense of pride. Also it’s made me an even more confident person (and those of you that know me know I’m a very confident person)
Tell us about the new things you’re learning about radio editing and production? At the end of August, Redshift Radio relocated studios from Crewe to Nantwich and Liz asked me if I was interested in getting involved with the production and editing side of RedShift in addition to doing my radio show. I was only too happy to do so. I started doing my additional role at the end of September, editing the community news and also adding backing tracks to our new Jingles...including my own....a very proud moment.
How and when can people listen in, make requests, and how can they catch up with shows they’ve missed? Since we relocated I’ve moved my show so now I’m on air every Tuesday evening between 6 and 8pm. We are an internet station so you can listen online at www.redshiftradio.co.uk/player or you can download the RedShift Radio app for free from your mobile app store (just search for ‘RedShift Radio’). You can also find us on the ‘Tune-In Radio’ app. You can send requests to my Twitter account which is @StevenBebe or www.twitter.com/ StevenBebe or message me on Facebook www.facebook. com/steven.bebe but you may
have to add me as a friend if you’re not already. Alternatively you can call or text the RedShift studio on 01270 262 262 when I’m on air.
If you cannot catch me live, I always upload my show to Mixcloud for people to listen to the following day www. mixcloud.com/steven-bebe/ (you may have to create an account to do so, but it is free
What does it involve and what do you actually do? I present a community news and music show called ‘What’s Happening with Steve Bebe’ which initially started on a Monday afternoon between 2 and 3 pm before moving to a new slot. In my first few shows I spoke about the different areas of the NMC and now I talk about upcoming fundraising events every week. I also did a spot about Nantwich Cricket Club (where i do the cricket scoring) during the cricket season, talking about the previous weekends results. I promote events going on in Crewe and Nantwich and also Redshift Radio events and other Redshift shows.
What have you learnt? I’ve learnt how a radio station works and how to set up shows with music, hub sweepers (which play over the start over an intro to a song before the vocals start) commercials and community highlight news at the top of the hour. I’ve also learnt about how to speak properly on air including remembering to give time checks and learning how to talk over songs, especially how to get the fader levels right - all very technical and very radio geeky things...Haha!!
What do you get out of it? The opportunity to finally fulfil a boyhood dream to be a radio DJ, following in the footsteps of my radio heroes like Steve Wright, Mark and Lard, Terry Wogan and Chris Moyles. It’s a lot better than playing your tape cassettes and CDs at home while talking to yourself (which is exactly what I used to do as a kid....and in recent years using my iTunes if I’m being honest...Haha!!) Also the fact that I get the opportunity to spread the word about the fabulous work that we do here at The NeuroMuscular Centre.
Has it impacted other areas of your life? Like I said above, giving me the chance to talk about the work that I do at the centre, and also promote The NMC on radio, gives me a huge sense of pride. Also it’s made me an even more confident person (and those of you that know me know I’m a very confident person)
Tell us about the new things you’re learning about radio editing and production? At the end of August, Redshift Radio relocated studios from Crewe to Nantwich and Liz asked me if I was interested in getting involved with the production and editing side of RedShift in addition to doing my radio show. I was only too happy to do so. I started doing my additional role at the end of September, editing the community news and also adding backing tracks to our new Jingles...including my own....a very proud moment.
How and when can people listen in, make requests, and how can they catch up with shows they’ve missed? Since we relocated I’ve moved my show so now I’m on air every Tuesday evening between 6 and 8pm. We are an internet station so you can listen online at www.redshiftradio.co.uk/player or you can download the RedShift Radio app for free from your mobile app store (just search for ‘RedShift Radio’). You can also find us on the ‘Tune-In Radio’ app. You can send requests to my Twitter account which is @StevenBebe or www.twitter.com/ StevenBebe or message me on Facebook www.facebook. com/steven.bebe but you may
have to add me as a friend if you’re not already. Alternatively you can call or text the RedShift studio on 01270 262 262 when I’m on air.
If you cannot catch me live, I always upload my show to Mixcloud for people to listen to the following day www. mixcloud.com/steven-bebe/ (you may have to create an account to do so, but it is free
Award For Bob
Bob Blaney has been volunteering at the Neuromuscular Centre for almost 15 years. He is a vital member of our physio team here at the centre and has helped many people over the years. He also has a very good listening ear and is very approachable!
Bob discovered the NMC when he was a carer to Frank Carter, a physio client. At the age of 65 Bob retired and It was from that point in his life Bob asked if he could join the physio team as a volunteer. Bob volunteer’s with us on a Monday and Thursday and also helped out at our open days. Bob tells me it was his wife, a carer by profession who inspired him into a caring role and volunteering.
Lynne Groves our senior physiotherapist recently nominated Bob for the Cheshire Voluntary Service Outstanding Volunteer Support and Service Award. He was awarded this at a gala evening in the presence of his wife, members of our physio team, Lynne Groves, Paul Orme and Gill Storey. This award is a fantastic validation of Bob’s work within the NMC community. Bob speaks very highly of all his colleagues at the NMC. He would especially like to thank Lynne, Paul, Gill and Helen for all their support over the years.
Bob has received recognition for many things, throughout his life. In 2007 he was nominated for the Siemens Care and Share Team Award and was also recognized by Cheshire County Council with a certificate of commendation. He was also a Director for the Disability Resource Exchange.
A proud moment for Bob was when he was successful in nominating Frank Carter to carry the baton in the Queen’s Jubilee Baton Relay when it came through Nantwich prior to the Commonwealth Games.
Bob also felt inspired by a poem called “A Crabbit Old Woman”. A piece of poetry close to his heart.
We would like to wish Bob many congratulation’s on his award from us all here at NMC!
Well done Bob!
Bob discovered the NMC when he was a carer to Frank Carter, a physio client. At the age of 65 Bob retired and It was from that point in his life Bob asked if he could join the physio team as a volunteer. Bob volunteer’s with us on a Monday and Thursday and also helped out at our open days. Bob tells me it was his wife, a carer by profession who inspired him into a caring role and volunteering.
Lynne Groves our senior physiotherapist recently nominated Bob for the Cheshire Voluntary Service Outstanding Volunteer Support and Service Award. He was awarded this at a gala evening in the presence of his wife, members of our physio team, Lynne Groves, Paul Orme and Gill Storey. This award is a fantastic validation of Bob’s work within the NMC community. Bob speaks very highly of all his colleagues at the NMC. He would especially like to thank Lynne, Paul, Gill and Helen for all their support over the years.
Bob has received recognition for many things, throughout his life. In 2007 he was nominated for the Siemens Care and Share Team Award and was also recognized by Cheshire County Council with a certificate of commendation. He was also a Director for the Disability Resource Exchange.
A proud moment for Bob was when he was successful in nominating Frank Carter to carry the baton in the Queen’s Jubilee Baton Relay when it came through Nantwich prior to the Commonwealth Games.
Bob also felt inspired by a poem called “A Crabbit Old Woman”. A piece of poetry close to his heart.
We would like to wish Bob many congratulation’s on his award from us all here at NMC!
Well done Bob!
10 Years producing One Voice - Andrea Duckworth
After ten years and hundreds of articles, Andrea is moving to new projects. We couldn’t let Andrea go without celebrating this achievement and asking her to offer some advice for the future.
One Voice began in 2005. There was a newsletter for supporters of NMC but I felt that there was an unmet need, and that physio clients and their families could benefit from one too. Being diagnosed with muscular dystrophy or an associated neuromuscular condition can often be very isolating and frightening. The purpose of this newsletter / magazine was to share ideas and experiences of living day to day with a disability and empower people to make the most out of their lives. I felt that having a disability should not prevent you from doing this. I wanted to get people talking and sharing their life experiences. I put forward a proposal to Sarah Kelly, the Chief Executive of NMC at the time, and she loved the idea. The rest as they say was history!
I encouraged clients, carers, volunteers, staff, and in recent years the Trustees and others in the NMC community to share their experiences. Through that, we have supported each other through the good times and reassured each other through the challenging ones! It has been wonderful to see, that having contributed an article to One Voice, how much people have grown in confidence. In so many cases it has boosted their self-esteem and self-worth. We have covered so many aspects of living with a disability including, pregnancy, parenthood, transition, life in a wheelchair, accessible days to mention just a few. One Voice has also inspired clients to try new things and some have started to learn to drive, something they never thought possible. In other instances when we covered some very sensitive subjects such as depression and bereavement, it was really important to actively listen and support clients through very difficult periods in their lives. As we celebrate One Voice’s tenth birthday, and look forward to the next ten years I would like to share a recent quote that I received from a client . “Thank you for making a big difference to all of us. You have no idea just how important the magazine is, in communicating, informing, cheering us all up and reassuring us”. So that leaves me to wish the new “One Voice Team”, Jon, Karen, Sanjay , Mark and Moyra the best of luck! How did you manage to do One Voice on your own? I guess it was like having a minibusiness! It was like having to do a dissertation at University, three times a year. Roughly 12,000 words per edition. I am a driven and motivated person and saw each edition as a new opportunity. The hardest part was chasing articles if they had not met your deadline. You would ask / send gentle reminders but sometimes you had to go without them, jig things around and change the content at the last minute. It always worked out in the end! As Editor, I felt fully responsible even when we had printing and technical errors which were completely outside of my control!
What tips would you give to the new team? Talk to different types of people, be really interested in what they have to say or are doing in their lives. Be approachable and friendly and offer support to people writing their articles. Be motivated and have an ability to see the bigger picture. It is also important to cope with pressure eg. Deadlines - several articles coming in at the same time or articles not coming in, so having to find alternative material at very short notice. What was your vision for the future? I firmly believe that life is there for the taking. Yes, you might need some support from a pa , friend, family member, colleague. That enables you so that you can achieve in every aspect of your life be that in your leisure time or work time. Generally the greatest barrier is yourself. Sometimes, we are our own worst enemies. With my professional experience of disability through NMC - One Voice and Advocacy, and my personal experience through my own disability and my son’s, I am in the process of setting up my own business as a Motivational Speaker / Life Coach / Advocate. I passionately believe that anybody can achieve in all aspects of their lives, whether they have a disability or not.
I am very excited about this venture and looking forward to working with NMC on projects in 2016. A Pharmaceutical company has asked me to speak later this month in Copenhagen at one of their events. They have asked for a patient to explain how they manage day to day living with Pompe disease. I am really looking forward to this opportunity but it will also be a bit daunting talking in front of 60 medical and commercial delegates from all over the world!
I see this as the beginning of a new chapter in my life. I always like to challenge myself, and as someone recently said to me, “you will not succeed until you move outside your comfort zone”.
One Voice began in 2005. There was a newsletter for supporters of NMC but I felt that there was an unmet need, and that physio clients and their families could benefit from one too. Being diagnosed with muscular dystrophy or an associated neuromuscular condition can often be very isolating and frightening. The purpose of this newsletter / magazine was to share ideas and experiences of living day to day with a disability and empower people to make the most out of their lives. I felt that having a disability should not prevent you from doing this. I wanted to get people talking and sharing their life experiences. I put forward a proposal to Sarah Kelly, the Chief Executive of NMC at the time, and she loved the idea. The rest as they say was history!
I encouraged clients, carers, volunteers, staff, and in recent years the Trustees and others in the NMC community to share their experiences. Through that, we have supported each other through the good times and reassured each other through the challenging ones! It has been wonderful to see, that having contributed an article to One Voice, how much people have grown in confidence. In so many cases it has boosted their self-esteem and self-worth. We have covered so many aspects of living with a disability including, pregnancy, parenthood, transition, life in a wheelchair, accessible days to mention just a few. One Voice has also inspired clients to try new things and some have started to learn to drive, something they never thought possible. In other instances when we covered some very sensitive subjects such as depression and bereavement, it was really important to actively listen and support clients through very difficult periods in their lives. As we celebrate One Voice’s tenth birthday, and look forward to the next ten years I would like to share a recent quote that I received from a client . “Thank you for making a big difference to all of us. You have no idea just how important the magazine is, in communicating, informing, cheering us all up and reassuring us”. So that leaves me to wish the new “One Voice Team”, Jon, Karen, Sanjay , Mark and Moyra the best of luck! How did you manage to do One Voice on your own? I guess it was like having a minibusiness! It was like having to do a dissertation at University, three times a year. Roughly 12,000 words per edition. I am a driven and motivated person and saw each edition as a new opportunity. The hardest part was chasing articles if they had not met your deadline. You would ask / send gentle reminders but sometimes you had to go without them, jig things around and change the content at the last minute. It always worked out in the end! As Editor, I felt fully responsible even when we had printing and technical errors which were completely outside of my control!
What tips would you give to the new team? Talk to different types of people, be really interested in what they have to say or are doing in their lives. Be approachable and friendly and offer support to people writing their articles. Be motivated and have an ability to see the bigger picture. It is also important to cope with pressure eg. Deadlines - several articles coming in at the same time or articles not coming in, so having to find alternative material at very short notice. What was your vision for the future? I firmly believe that life is there for the taking. Yes, you might need some support from a pa , friend, family member, colleague. That enables you so that you can achieve in every aspect of your life be that in your leisure time or work time. Generally the greatest barrier is yourself. Sometimes, we are our own worst enemies. With my professional experience of disability through NMC - One Voice and Advocacy, and my personal experience through my own disability and my son’s, I am in the process of setting up my own business as a Motivational Speaker / Life Coach / Advocate. I passionately believe that anybody can achieve in all aspects of their lives, whether they have a disability or not.
I am very excited about this venture and looking forward to working with NMC on projects in 2016. A Pharmaceutical company has asked me to speak later this month in Copenhagen at one of their events. They have asked for a patient to explain how they manage day to day living with Pompe disease. I am really looking forward to this opportunity but it will also be a bit daunting talking in front of 60 medical and commercial delegates from all over the world!
I see this as the beginning of a new chapter in my life. I always like to challenge myself, and as someone recently said to me, “you will not succeed until you move outside your comfort zone”.
Friday 31 July 2015
My experience of pregnancy- Karen Pritchard
I was diagnosed with Hereditary Sensory Motor Neuropathy as a teenager. In 1999, after further tests my diagnosis changed and I was then diagnosed with Distal Spinal Muscular Atrophy (SMA). In 2007 I gave birth to a baby boy.
I had a normal healthy pregnancy and the Consultant did not detect any abnormalities whilst I was pregnant. I was using my wheelchair at the time. I had a planned caesarean section at 39 weeks and was safely delivered a baby boy. As you can imagine I was relieved when the heel prick test at birth (for MD) came back all clear.
I must admit I didn’t really think about passing on my condition and Evan showed no signs or symptoms. I was told to “go and live your life”. I do sometimes worry though if things might manifest themselves as he becomes a teenager.
When I was pregnant I concentrated on getting through the pregnancy and did not really have any plans in place for afterwards. I didn’t really think my disability would affect me that much. I came down to earth with a bang. It was hard both physically and emotionally. I had a new baby to look after, was recovering from the birth and was also trying to cope with on-going pain from my condition. I suffered with postnatal depression and found it very debilitating. I found it really hard just coping day to day and looking back, feel there were times when I didn’t really live life but just existed. It got to the point that I had to spend some time in hospital. My husband Alan was a constant source of support.
Thankfully I had a good midwife and was referred to “Home Start”. I found this service so helpful and the person that I was allocated was fantastic. She helped me with all the practical things and as Evan got older she was such a valuable support for me. We had a good relationship and even though I no longer receive this service the lady and I still meet up as friends regularly. I sought much support from NMC and this was invaluable and got me through some really tough times. I was in touch with other women who had suffered postnatal depression, and it was great to be able to seek support from people who really understood. I also gained knowledge and advice through groups including PANDAS *and NETMUMS * which I found really helpful.
The pregnancy did take its toll on my body and as a result my body has become weaker. However, having a child was the best thing my husband and I ever did. Evan inspires me and when I am having a bad day and in pain he spurs me on! He is a grounded person. Kids get it and understand your circumstances.
My advice to others thinking about a possible pregnancy would be to try and plan ahead and think about the support you might need once the baby is born. Do not be afraid to ask for help and support. It is far better to do that, than feel lonely and isolated. Do remember that your mental health is important too!
Grab the opportunity to enter the world of motherhood with both hands – Dawn Wilbur During my life I have always had the attitude that dreams can become reality - barriers can be broken. I’ve had 2 babies. A stillborn baby daughter called Sky in February 1995 and in 1992 an incredible baby boy, Graham, who is now 12 years old. He is my greatest ever joy on earth. Both babies were born prematurely due to a condition called pre-eclampsia This was not connected with my condition Spinal Muscular Atrophy (SMA). Sky was born naturally and Graham by caesarean section.
Fortunately, in the early stages of pregnancy, I was able to benefit from weekly swimming sessions and regular physiotherapy sessions.
During my pregnancy with Graham, I had an amazing obstetrician who supported my husband and I throughout the pregnancy. Although my lung capacity is almost half that of a lady unaffected, I had peace of mind as I had regular lung function appointments at North Staffs. The reason for having Graham there was precautionary in case my lungs became problematic. On 4th October everything went really smoothly. Graham was born at North Staffordshire Hospital and went straight into the Special Care Baby Unit (SCBU). A couple of days later he was transferred to Chester SCBU as this was nearer home. For the first two weeks we visited him daily, then we stayed at the hospital for a week, in a room with Graham. This was perfect as they taught us first aid, bathing and many new born baby parenting skills. Once Graham had gained adequate weight we were able to bring him home. That was just a wonderful moment. The midwives from SCBU visited us regularly and then subsequently the health visitors.
I became a member of a national postnatal group and a local mother and toddler group. I mainly sourced information from other parents and I also joined some pertinent websites.
Pregnancy with a physical disability - www.apa.org
*Homestart – www.home-start.org.uk - A nationwide organisation that offers help/ a companion to parents who have a disability.
*PANDAS – Pre and Post natal Depression Advice and Support www.pandasfoundation.org.uk
Next Steps
If you would like to speak to someone at NMC who has gone through a pregnancy, then please contact Sue Walker at NMC in the first instance. Tel. 01606 860911
I had a normal healthy pregnancy and the Consultant did not detect any abnormalities whilst I was pregnant. I was using my wheelchair at the time. I had a planned caesarean section at 39 weeks and was safely delivered a baby boy. As you can imagine I was relieved when the heel prick test at birth (for MD) came back all clear.
I must admit I didn’t really think about passing on my condition and Evan showed no signs or symptoms. I was told to “go and live your life”. I do sometimes worry though if things might manifest themselves as he becomes a teenager.
When I was pregnant I concentrated on getting through the pregnancy and did not really have any plans in place for afterwards. I didn’t really think my disability would affect me that much. I came down to earth with a bang. It was hard both physically and emotionally. I had a new baby to look after, was recovering from the birth and was also trying to cope with on-going pain from my condition. I suffered with postnatal depression and found it very debilitating. I found it really hard just coping day to day and looking back, feel there were times when I didn’t really live life but just existed. It got to the point that I had to spend some time in hospital. My husband Alan was a constant source of support.
Thankfully I had a good midwife and was referred to “Home Start”. I found this service so helpful and the person that I was allocated was fantastic. She helped me with all the practical things and as Evan got older she was such a valuable support for me. We had a good relationship and even though I no longer receive this service the lady and I still meet up as friends regularly. I sought much support from NMC and this was invaluable and got me through some really tough times. I was in touch with other women who had suffered postnatal depression, and it was great to be able to seek support from people who really understood. I also gained knowledge and advice through groups including PANDAS *and NETMUMS * which I found really helpful.
The pregnancy did take its toll on my body and as a result my body has become weaker. However, having a child was the best thing my husband and I ever did. Evan inspires me and when I am having a bad day and in pain he spurs me on! He is a grounded person. Kids get it and understand your circumstances.
My advice to others thinking about a possible pregnancy would be to try and plan ahead and think about the support you might need once the baby is born. Do not be afraid to ask for help and support. It is far better to do that, than feel lonely and isolated. Do remember that your mental health is important too!
Grab the opportunity to enter the world of motherhood with both hands – Dawn Wilbur During my life I have always had the attitude that dreams can become reality - barriers can be broken. I’ve had 2 babies. A stillborn baby daughter called Sky in February 1995 and in 1992 an incredible baby boy, Graham, who is now 12 years old. He is my greatest ever joy on earth. Both babies were born prematurely due to a condition called pre-eclampsia This was not connected with my condition Spinal Muscular Atrophy (SMA). Sky was born naturally and Graham by caesarean section.
Fortunately, in the early stages of pregnancy, I was able to benefit from weekly swimming sessions and regular physiotherapy sessions.
During my pregnancy with Graham, I had an amazing obstetrician who supported my husband and I throughout the pregnancy. Although my lung capacity is almost half that of a lady unaffected, I had peace of mind as I had regular lung function appointments at North Staffs. The reason for having Graham there was precautionary in case my lungs became problematic. On 4th October everything went really smoothly. Graham was born at North Staffordshire Hospital and went straight into the Special Care Baby Unit (SCBU). A couple of days later he was transferred to Chester SCBU as this was nearer home. For the first two weeks we visited him daily, then we stayed at the hospital for a week, in a room with Graham. This was perfect as they taught us first aid, bathing and many new born baby parenting skills. Once Graham had gained adequate weight we were able to bring him home. That was just a wonderful moment. The midwives from SCBU visited us regularly and then subsequently the health visitors.
I became a member of a national postnatal group and a local mother and toddler group. I mainly sourced information from other parents and I also joined some pertinent websites.
Pregnancy with a physical disability - www.apa.org
*Homestart – www.home-start.org.uk - A nationwide organisation that offers help/ a companion to parents who have a disability.
*PANDAS – Pre and Post natal Depression Advice and Support www.pandasfoundation.org.uk
Next Steps
If you would like to speak to someone at NMC who has gone through a pregnancy, then please contact Sue Walker at NMC in the first instance. Tel. 01606 860911
Pregnancy, my experience – Louise Berry-Corbett
I am a physio client at NMC and was initially diagnosed wth Limb Girdle Muscular Dystrophy.
In 1999 I had my first child and a couple of years later I was diagnosed with my condition. What prompted the diagnosis was that one day when I was carrying my son in a baby carrier, I fell whilst out walking, and my son nearly hit his head on the kerb. It really scared me and I got quite frightened. I was obviously concerned about having another child but was told that the risk of having a child with limb girdle muscular dystrophy (MD) was very low indeed.
With a forthcoming pregnancy, I was advised to change some of the medication that I was talking for my md, as they could have a potential damaging effect on the baby. I had a normal pregnancy, but the pregnancy did put a lot of strain on my back.
The specialist was worried about me having a natural birth because it could really tire me out and put additional pressure on my back. However, a caesarean section would also take its toll on my body. It was a bit of a catch 22!
At 37 weeks I was induced, my waters broke and I had an epidural. The surgeon checked that it was okay for me to deliver the baby naturally. I had 2 midwives and the baby, a little girl, helped push herself out! There was also a specialist team on standby just in case.
Afterwards, I could not really get up and down and holding her was quite difficult. Unfortunately it wasn’t possible for my partner to stay so he had to sleep in the car! I found that the staff did not really cater for “disabled” mums and the extra support that they might need. When I came home I had plenty of help from my partner and my family which made a big difference.
My baby, Lacey is now 3. She’s absolutely fine, although as you can imagine I watch her like a hawk! I have decided not to have any more children because I do not feel physically strong enough. My body has weakened and it would not be fair to consider another pregnancy.
My advice to others is
In 1999 I had my first child and a couple of years later I was diagnosed with my condition. What prompted the diagnosis was that one day when I was carrying my son in a baby carrier, I fell whilst out walking, and my son nearly hit his head on the kerb. It really scared me and I got quite frightened. I was obviously concerned about having another child but was told that the risk of having a child with limb girdle muscular dystrophy (MD) was very low indeed.
With a forthcoming pregnancy, I was advised to change some of the medication that I was talking for my md, as they could have a potential damaging effect on the baby. I had a normal pregnancy, but the pregnancy did put a lot of strain on my back.
The specialist was worried about me having a natural birth because it could really tire me out and put additional pressure on my back. However, a caesarean section would also take its toll on my body. It was a bit of a catch 22!
At 37 weeks I was induced, my waters broke and I had an epidural. The surgeon checked that it was okay for me to deliver the baby naturally. I had 2 midwives and the baby, a little girl, helped push herself out! There was also a specialist team on standby just in case.
Afterwards, I could not really get up and down and holding her was quite difficult. Unfortunately it wasn’t possible for my partner to stay so he had to sleep in the car! I found that the staff did not really cater for “disabled” mums and the extra support that they might need. When I came home I had plenty of help from my partner and my family which made a big difference.
My baby, Lacey is now 3. She’s absolutely fine, although as you can imagine I watch her like a hawk! I have decided not to have any more children because I do not feel physically strong enough. My body has weakened and it would not be fair to consider another pregnancy.
My advice to others is
- Do not be afraid to ask for help.
- Ask the hospital how they will help support you and / or your partner.
- During the pregnancy think about taking well-being pregnancy vitamins.
- Remember it can take your body a lot longer to recover from pregnancy than someone who does not have muscular dystrophy.
Pregancy
Starting a family? Thinking about starting a family is a very exciting prospect but it can also be daunting. Any prospective parent worries about how they might cope, but these worries can be compounded when you have a disability.
Seek support The most important thing is to talk things through with your partner, and seek advice and support so that you can make an informed choice about a possible pregnancy. You might contact your doctor, specialist consultant or may decide to have genetic counselling. It is also a good idea to speak to others who have gone through a similar experience.
Remember that being an “independent” parent does not necessarily mean doing things on your own. Being “independent” could mean that you need someone else’s hands to do the practical things for you. You can instruct others as to how you would like things done, whether that’s a PA, a friend or a family member.
Here at NMC they are several clients who have gone on to have children despite their disability. Deciding to have children is a big decision, even more so when you have a disability, but with the right advice, support and equipment, in most cases it is possible. Tanni Grey Thompson and Alison Laper are examples of parents with a disability who have shown that it can be done!
Disability, Pregnancy & Parenthood (DPPI) A charity that promotes better awareness and support for disabled people during pregnancy and as parents. A free and confidential enquiry service.Tel 0800 018 4730 email: info@dppi.org.uk Web: http://www.dppi.org.uk/ about.php
Seek support The most important thing is to talk things through with your partner, and seek advice and support so that you can make an informed choice about a possible pregnancy. You might contact your doctor, specialist consultant or may decide to have genetic counselling. It is also a good idea to speak to others who have gone through a similar experience.
Remember that being an “independent” parent does not necessarily mean doing things on your own. Being “independent” could mean that you need someone else’s hands to do the practical things for you. You can instruct others as to how you would like things done, whether that’s a PA, a friend or a family member.
Here at NMC they are several clients who have gone on to have children despite their disability. Deciding to have children is a big decision, even more so when you have a disability, but with the right advice, support and equipment, in most cases it is possible. Tanni Grey Thompson and Alison Laper are examples of parents with a disability who have shown that it can be done!
Disability, Pregnancy & Parenthood (DPPI) A charity that promotes better awareness and support for disabled people during pregnancy and as parents. A free and confidential enquiry service.Tel 0800 018 4730 email: info@dppi.org.uk Web: http://www.dppi.org.uk/ about.php
Live Life – Marc Chapman
I have written this article to show that life with a disability isn’t all doom and gloom! I believe we are the same and can do the same as anyone. I’m proof of that and I have never let anything get in my way preventing me from doing something.
I used to go to Hebden Green School (next to the NMC). When I was doing my GCSE’s, I didn’t get the results that I wanted in Maths and English and ended up with a D in English and an E in Maths when I needed a C or above. I thought this would ruin my chances of getting to college.
However, whilst at school I started coming to the NMC and studied Graphic Design which I very much enjoyed. I achieved an NCFE Level 1.
Inspired by my success in Graphic Design I moved on to college and studied BTEC Level 3 in Moving Image (Film and TV), where I achieved a Distinction. I also continued with functional skills in Maths and English.
This just proves that if you don’t get the grades at school it isn’t always the end of the world. There’s nearly always a way round it and you can end up being successful.
During my time at college I still carried on coming to NMC for physiotherapy. It kept me fit and healthy and was a huge boost to my well-being.
Although my next step was to pursue a HNC course at college, the course did not run, due to being under-subscribed. So I took a gap year. I have kept myself busy. I approached Matthew at NMC who was able to offer me some work experience with the Design and Print team on Wednesdays. I have loved every minute of it and never looked back. The camaraderie is second to none.
I have regular physiotherapy and I have started doing a web design course in training which I have also really enjoyed.
Coming to the NMC is a big part of my life and it provides me with the opportunity to socialise with many like-minded people. If I have any problems with my ventilator or wheelchair, someone in the building will have a solution, which puts your mind ease. I have made some good friends along the way, so I would definitely recommend the NMC to anyone with muscular dystrophy!
I used to go to Hebden Green School (next to the NMC). When I was doing my GCSE’s, I didn’t get the results that I wanted in Maths and English and ended up with a D in English and an E in Maths when I needed a C or above. I thought this would ruin my chances of getting to college.
However, whilst at school I started coming to the NMC and studied Graphic Design which I very much enjoyed. I achieved an NCFE Level 1.
Inspired by my success in Graphic Design I moved on to college and studied BTEC Level 3 in Moving Image (Film and TV), where I achieved a Distinction. I also continued with functional skills in Maths and English.
This just proves that if you don’t get the grades at school it isn’t always the end of the world. There’s nearly always a way round it and you can end up being successful.
During my time at college I still carried on coming to NMC for physiotherapy. It kept me fit and healthy and was a huge boost to my well-being.
Although my next step was to pursue a HNC course at college, the course did not run, due to being under-subscribed. So I took a gap year. I have kept myself busy. I approached Matthew at NMC who was able to offer me some work experience with the Design and Print team on Wednesdays. I have loved every minute of it and never looked back. The camaraderie is second to none.
I have regular physiotherapy and I have started doing a web design course in training which I have also really enjoyed.
Coming to the NMC is a big part of my life and it provides me with the opportunity to socialise with many like-minded people. If I have any problems with my ventilator or wheelchair, someone in the building will have a solution, which puts your mind ease. I have made some good friends along the way, so I would definitely recommend the NMC to anyone with muscular dystrophy!
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;
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.
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.
- 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.
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.
New Transition Team – Cheshire West and Chester
Cheshire West and Chester Council has set up a specialised team to assess the needs of young people with disabilities and arrange appropriate support for them and their families. These young people aged between 16 and 25 years old, may have physical and/or learning disabilities or sensory impairment. The team will ensure that each has their own plan, setting out the steps required for a smooth transition from children’s to adult’s care and support services. Comprising seven full time staff, the team will work closely with the Council’s social care services and Special Educational Needs teams to ensure that every disabled young person has opportunities for paid employment, the potential to live independently, good health, and develops the skills to form friendships, relationships and be part of his or her community.
Councillor Brenda Dowding, Executive Member for Adult Social Care and Health, commented: “The new service recognises the need to target support to those families who have disabled children growing up to adulthood. By concentrating on the needs and wishes of the young person, we aim to put together a personalised plan which nurtures potential, opens up a range of new opportunities and reduces stress for families at a critical part of a young person’s life. “
Councillor Mark Stocks, Executive Member for Education and Children, commended the development as, “Emphasising what can be done when key services work together, putting the wellbeing of the young person at the centre of planning for their changing and future needs, so that they get the very best possible start in life.”
For further information contact: Louise Hill, Senior Manager,
Disabled Children and Personal Budgets. Tel. 0151 337 6300
Keith Evans, Senior Manager,
Prevention and Wellbeing Tel. 01244 972990
Samantha Williams, Senior
Practice Lead/Practice
Manager Tel 01606 271939
Councillor Brenda Dowding, Executive Member for Adult Social Care and Health, commented: “The new service recognises the need to target support to those families who have disabled children growing up to adulthood. By concentrating on the needs and wishes of the young person, we aim to put together a personalised plan which nurtures potential, opens up a range of new opportunities and reduces stress for families at a critical part of a young person’s life. “
Councillor Mark Stocks, Executive Member for Education and Children, commended the development as, “Emphasising what can be done when key services work together, putting the wellbeing of the young person at the centre of planning for their changing and future needs, so that they get the very best possible start in life.”
For further information contact: Louise Hill, Senior Manager,
Disabled Children and Personal Budgets. Tel. 0151 337 6300
Keith Evans, Senior Manager,
Prevention and Wellbeing Tel. 01244 972990
Samantha Williams, Senior
Practice Lead/Practice
Manager Tel 01606 271939
Thiara Begum
In 2006, shortly after giving birth to my son, I was diagnosed with Pompe Disease, a rare progressive metabolic disease. This led to the break-up of my marriage and depression.
In 2006, I began using a wheelchair whilst outdoors. I was also using sticks and a walking frame.
Even before the diagnosis and particularly when I was pregnant, I was struggling to climb the stairs and get up from the floor. I think I knew that something wasn’t quite right. After my son Adil was born I found things very hard both physically and mentally. I suffered from post-natal depression. Eventually I found a childminder for Adil for a few hours which gave me a break.
Over the years I have tried my best to give my son the best childhood I could, but this was not easy. As time has gone on, my health has continued to deteriorate. I never thought of myself as “normal” and I had no self-confidence at all. Day after day I would continue to fear for my future, as I knew that I would continue to get weaker.
Furthermore, I felt that because my family had been so protective of me, I had never gone out of my “comfort zone”.
I have had muscle weakness in my legs for many years and although I struggled to stand up, at one time I was able to walk holding onto things. However, I was not given the opportunity to have a go in case I fell, and instead things were done for me. I feel that this had a real impact on my health and as a result I became weaker much quicker as I was not using certain muscles.
In my opinion, sometimes, parents although well-meaning, can actually be hindering and / or making things worse.
In 2011 I came to the NMC for an assessment and I now receive regular physiotherapy and hydrotherapy which really help alleviate some of the symptoms of my condition. By 2012 I started using a wheelchair indoors as well.
In 2014, I met a lady called Sue Barker, at a fun day in my local park. Sue runs her own business under the umbrella of a local company called “Forever Living” which specialises in Aloe Vera. I was attracted to her stall and went over for a chat.
After talking to her I decided to try the products. She visited me at home and after taking the products I felt amazing. I used to have to go to bed for 2/3 hours each day. Now I don’t need to and I feel more alert, alive and active. Having benefitted from the products myself, I decided I wanted to take the opportunity to help others too.
So, with the help and support of my new husband, I now have my own Forever business and I have achieved beyond my imagination.
Thanks to Sue, I have turned my life around. I am no longer confined to four walls. My confidence and skills are growing every day and instead of fearing my future, I am looking forward to it.
Just because you have a long term condition it doesn’t mean you can’t do something.
In 2006, I began using a wheelchair whilst outdoors. I was also using sticks and a walking frame.
Even before the diagnosis and particularly when I was pregnant, I was struggling to climb the stairs and get up from the floor. I think I knew that something wasn’t quite right. After my son Adil was born I found things very hard both physically and mentally. I suffered from post-natal depression. Eventually I found a childminder for Adil for a few hours which gave me a break.
Over the years I have tried my best to give my son the best childhood I could, but this was not easy. As time has gone on, my health has continued to deteriorate. I never thought of myself as “normal” and I had no self-confidence at all. Day after day I would continue to fear for my future, as I knew that I would continue to get weaker.
Furthermore, I felt that because my family had been so protective of me, I had never gone out of my “comfort zone”.
I have had muscle weakness in my legs for many years and although I struggled to stand up, at one time I was able to walk holding onto things. However, I was not given the opportunity to have a go in case I fell, and instead things were done for me. I feel that this had a real impact on my health and as a result I became weaker much quicker as I was not using certain muscles.
In my opinion, sometimes, parents although well-meaning, can actually be hindering and / or making things worse.
In 2011 I came to the NMC for an assessment and I now receive regular physiotherapy and hydrotherapy which really help alleviate some of the symptoms of my condition. By 2012 I started using a wheelchair indoors as well.
In 2014, I met a lady called Sue Barker, at a fun day in my local park. Sue runs her own business under the umbrella of a local company called “Forever Living” which specialises in Aloe Vera. I was attracted to her stall and went over for a chat.
After talking to her I decided to try the products. She visited me at home and after taking the products I felt amazing. I used to have to go to bed for 2/3 hours each day. Now I don’t need to and I feel more alert, alive and active. Having benefitted from the products myself, I decided I wanted to take the opportunity to help others too.
So, with the help and support of my new husband, I now have my own Forever business and I have achieved beyond my imagination.
Thanks to Sue, I have turned my life around. I am no longer confined to four walls. My confidence and skills are growing every day and instead of fearing my future, I am looking forward to it.
Just because you have a long term condition it doesn’t mean you can’t do something.
NMC has won the prestigious GSK IMPACT Award run by the highly respected King’s Fund.
NMC
was selected after rigorous judging and a gruelling assessment process. Matthew
Lanham, NMC’s Chief Executive said, “To win this Award is one of the most
significant achievements
in NMC’s 25 year history”.
The 10 winning charities including NMC, were selected from over 350 charities nominated from across the UK. All were considered to be leading charities working in the Health and Social Care field, and crucially, to be making a demonstrable important positive impact on people’s lives.
The award comes at an important time for NMC. This major national endorsement of our work adds huge credibility when we seek funding - particularly as we seek funding to expand the Centre. It also gives us a new strongly confident voice when representing NMC. Matthew Lanham continued, “I strongly believe that this recognition and endorsement is the most valuable part of the IMPACT.
Award prize”
The prize also included;
The 10 winning charities including NMC, were selected from over 350 charities nominated from across the UK. All were considered to be leading charities working in the Health and Social Care field, and crucially, to be making a demonstrable important positive impact on people’s lives.
The award comes at an important time for NMC. This major national endorsement of our work adds huge credibility when we seek funding - particularly as we seek funding to expand the Centre. It also gives us a new strongly confident voice when representing NMC. Matthew Lanham continued, “I strongly believe that this recognition and endorsement is the most valuable part of the IMPACT.
Award prize”
The prize also included;
- £30,000 which is clearly extremely welcome!
- A professionally made film about NMC.
- Over 500 Professionally taken photographs of all aspects of our community in action
- 3 days training for Gill Storey and Matthew Lanham at the King’s Fund in London which was inspiring and highly in formative, with all expenses paid.
- Gill and Matthew joined a national IMPACT Award winners network of 100 leaders of charities in the UK, who have previously won. NMC joins that small and elite group.
We took the opportunity of having a big screen in the Meadow for the Lego Movie event to show the film and some of the great photos to as many of the NMC staff/user community as we could. We wanted to share a little of the Awards night spirit back here in Winsford!
Your Rights To Fly - What You Need To Know
The guide offers advice for air passengers: when arranging and preparing for a flight, when arriving at an airport and checking in when moving through an airport, when boarding a flight, whilst onboard and when leaving the plane, details on where to find further information and useful contacts. To download go to: http://www.equalityhumanrights. com/publication/your-rights-flywhat-you-need-know- step-stepguide-disabled-and-less-mobileair-passengers.
Your passport to a smooth journey If you are disabled or have difficulty moving around, you can receive free assistance when you fly to and from the UK and Europe, including on domestic flights. Under European law, this assistance is available to anyone with mobility requirements – for example because of their disability, age or a temporary injury. This leaflet explains your rights and what to do to make sure you have the best chance of a smooth journey. You can find out more from a free step-by-step guide ‘Your Rights to Fly’, T. 0808 800 0082. Visit: http://www. equalityhumanrights.com/ search/site/your%20passport
Manchester airport guide to facilities for disabled people Manchester Airport has a new a guide for their facilities for disabled people, which can be accessed by visiting: http://www.manchester-airportguide.co.uk/disabled-facilities. html
Your passport to a smooth journey If you are disabled or have difficulty moving around, you can receive free assistance when you fly to and from the UK and Europe, including on domestic flights. Under European law, this assistance is available to anyone with mobility requirements – for example because of their disability, age or a temporary injury. This leaflet explains your rights and what to do to make sure you have the best chance of a smooth journey. You can find out more from a free step-by-step guide ‘Your Rights to Fly’, T. 0808 800 0082. Visit: http://www. equalityhumanrights.com/ search/site/your%20passport
Manchester airport guide to facilities for disabled people Manchester Airport has a new a guide for their facilities for disabled people, which can be accessed by visiting: http://www.manchester-airportguide.co.uk/disabled-facilities. html
Railcard
To see if you qualify for a railcard Visit: www.disabledpersonsrailcard.co.uk/what-is-adisabled-persons-railcard Or write to: Disabled Persons Railcard, PO Box 6613, Arbroath DD11 9AN
Cinema Tickets
You can get a Cinema Exhibitors’ Association Card (CEA Card) for UK cinemas. This enables you to get a free ticket for anyone accompanying you to the cinema. To qualify for this card you will either have to be in receipt of disability living allowance or attendance allowance, or be a registered blind person. For more information please contact, T 023 9224 8545 visit www.ceacard.co.uk
The Grand Union Canal
The Queen Elizabeth’s Foundation for Disabled People (QEF) charity has recently made some major renovations to its wheelchair accessible canal boat the QEF Jubilee. It has been upgraded to further enhance its access for people with disabilities and people with very restricted mobility can drive this canal boat. There are ramps for getting on and off board and lifts into the main inside section.
Facilities include a medical bed, a fully accessible bathroom with a level shower, hoist tracking on the ceilings throughout and charging facilities for powered wheelchairs. The controls are adaptable and can be customised, so that either a wheel, joystick or buttons can be used. For more information Tel. 01372 841148 visit vasd.org.uk/holidays/canalboat-holidays/
Facilities include a medical bed, a fully accessible bathroom with a level shower, hoist tracking on the ceilings throughout and charging facilities for powered wheelchairs. The controls are adaptable and can be customised, so that either a wheel, joystick or buttons can be used. For more information Tel. 01372 841148 visit vasd.org.uk/holidays/canalboat-holidays/
Walks with Wheelchairs
walkswithwheelchairs.com is a dedicated website of wheelchair friendly routes in The Lake District.
Holidays - Hafon y Mor, Marton Mere, Blackpool
My family and I (and the dog) went for a three night break away in May at Haven holidays, Marton Mere. It was an accessible, 2 bedroom caravan. The kitchen had lowered worktops and the bathroom had a shower with a seat on the wall in addition to a mobile seat and grab rails. The caravan was ramped and all the internal doors were sliding doors. I booked it through the Bookings Line and explained about my needs to ensure that I had the caravan that would best suit us. We had a lovely break. www.haven.com T 0871 230 2760 For adapted and accessible caravans – Call 0800 072 9496 to speak to the special needs team.
Make cooking easy !
https://www.lakeland. co.uk/18908/Masha The best masher as recommended by an NMC Client. Lump free mash in 20 seconds! Tip. Make a good amount and freeze the leftovers.
New delegating payments guide
New research has found that the majority of people needing assistance to make payments due to illness, capability or mobility challenges, are putting themselves at risk of fraud by sharing their card and PIN. More than half of those surveyed were also not aware of each of the safer options to make payments, such as a prepaid card or opening up a second account. To help these consumers, a new Pay Your Way consumer advice guide from the Payments Council sets out payment
options to help people stay in control of their financial affairs, when making payments independently or visiting the bank or ATM is difficult. Visit http://www.payyourway. org.uk/faqs/guides/ managing-payments/ to download the “Pay Your Way” Guide
options to help people stay in control of their financial affairs, when making payments independently or visiting the bank or ATM is difficult. Visit http://www.payyourway. org.uk/faqs/guides/ managing-payments/ to download the “Pay Your Way” Guide
Power loss emergencies – get on the register!!! – recommended by an NMC client
SP Energy Networks keep a Priority Services Register so that they can contact their most vulnerable customers if they experience a power interruption. People can be included on the register if they are dependent on medical equipment, chronically sick, disabled, or have some other special need that may require a special level of assistance. Register by calling 0845 273 4444 or email: customer.care@ sppowersystems.com
Make your chair or bed more comfortable
Furniture raisers make a chair or bed higher, which can make it more comfortable to use. The new Langham SureGrip raisers can be used with beds, sofas, chairs and tables, any furniture that doesn’t move. It doesn’t matter if it has castors, legs, a solid divan base or even modern block feet, the SureGrip raisers will hold it firmly in place, without damaging your furniture. The raisers feature a double grip to hold tightly on to furniture and a generous weight limit of 110 stone (700kg), including the chair or bed. The raiser can accommodate castors, legs up to (70mm 23/4 inch) and even block the included adhesive pad adaptors. For more information call 01332 850 277 http://www. gordonellishealthcare. co.uk/index.php?main_ page=product_info&products
Discounts on anything from mobility aids to accessible holidays
DH Discounts is a new site bringing together a collection of discounts, vouchers and special deals on a wide variety of products and services that disabled people want and need. The site aims to empower disabled people, to shop around, compare products and get the best price. So whether you want to have your bathroom redesigned, or you’re hoping to jet off to an accessible holiday destination, DH Discounts can help you source the best deals that the internet and the high street has to offer. http://disabilityhorizons. com/2015/04/dh-discountsempowering-disabled-people- through-consumer-choice/
Wheelchair ramps and scooter ramps
Wheelchair ramps and ramping equipment can maintain access to the home and increase quality of life. Wheelchair ramps range from the lightweight and portable through to heavier ramps designed for heavy duty use. Ramps assist in providing elderly or disabled people with greater mobility and independence. Tel: 01273 719 889. Email: contact@essentialaids.com Web: http://www.essentialaids. com/contact
The scooter store
Scooter Store is designed especially for owners of mobility scooters and powered wheelchairs. Just press a button, drive in and plug in to the power system. No need to drag your vehicle through the house or mess about with heavy locks and covers. While it stands safely outside its batteries can be charging ready for your next trip. Contact: Scooter Store Ltd on 01279 453 565 www.scooterstoreltd.com
Access to Work.
The number of disabled people being helped by Access to Work is up by over 10% on last year, according to the DWP. The Department says that new figures show that nearly 10,000 new disabled people claimed support from the scheme last year, which provides financial help towards the extra costs faced by disabled people at work, such as support workers, specialist aids and equipment and travel to work support. For more information about Access to Work visit: https://www.gov.uk/ access-to-work/overview
Neuro Therapy Centre
Last year The MS Centre in Saltney, changed its name to The Neuro Therapy Centre. The Centre provides practical support and therapies to manage the symptoms of MS and other neurological conditions and supports over 400 people. For more information contact: The Neuro Therapy Centre, Units C1 – C4, Brymau Estate 1, River Lane, Saltney, Chester. Tel: 01244 678619 Email: info@neurotherapycentre.org
Emergency contact disc, as an alternative to the Tax Disc
The Emergency Contact Disc contains next of kin contact details and medical alert information for the driver. In the event of a medical emergency or road traffic collision that renders the occupants unable to communicate, a first responder will be able to obtain vital information that is not otherwise accessible at the scene. The disc can be cut out and placed into the now redundant, tax disc holder. The information sections fold inwards so it would not be viewed by passers-by. All information is optional and the blank discs can be used to add customised information. The Emergency Contact Disc can be used alongside existing medical alert products like bracelets and necklaces.
Download the Emergency Contact Disc at: http://www.westmercia. police.uk/news/news-articles/ police-launch-emergency- contact-disc-as-alternative-totax-disc.html
Download the Emergency Contact Disc at: http://www.westmercia. police.uk/news/news-articles/ police-launch-emergency- contact-disc-as-alternative-totax-disc.html
Wheelchair ramps and scooter ramps
Wheelchair ramps and ramping equipment can maintain access to the home and increase quality of life. Wheelchair ramps range from the lightweight and portable through to heavier ramps designed for heavy duty use. Ramps assist in providing elderly or disabled people with greater mobility and independence.
Tel: 01273 719 889.
Email: contact@essentialaids.com
Web: http://www.essentialaids.com/contact
Tel: 01273 719 889.
Email: contact@essentialaids.com
Web: http://www.essentialaids.com/contact
The scooter store
Scooter Store is designed especially for owners of mobility scooters and powered wheelchairs. Just press a button, drive in and plug in to the power system. No need to drag your vehicle through the house or mess about with heavy locks and covers. While it stands safely outside its batteries can be charging ready for your next trip. Contact: Scooter Store Ltd on 01279 453 565 www.scooterstoreltd.com
Access to Work.
The number of disabled people being helped by Access to Work is up by over 10% on last year, according to the DWP. The Department says that new figures show that nearly 10,000 new disabled people claimed support from the scheme last year, which provides financial help towards the extra costs faced by disabled people at work, such as support workers, specialist aids and equipment and travel to work support. For more information about Access to Work visit: https://www.gov.uk/ access-to-work/overview
Neuro Therapy Centre
Last year The MS Centre in Saltney, changed its name to The Neuro Therapy Centre. The Centre provides practical support and therapies to manage the symptoms of MS and other neurological conditions and supports over 400 people. For more information contact: The Neuro Therapy Centre, Units C1 – C4, Brymau Estate 1, River Lane, Saltney, Chester. Tel: 01244 678619 Email: info@neurotherapycentre.org
The Care Act 2015
Seven years in the making, the new Care Act came in to place on the 1st April this year, with the intention of creating a clearer, fairer system of care, putting people in control of the way they are supported.
The Care Act means that local authorities now have increased responsibility for those who require care in their area. They have to carry out assessments for those who request them and provide a personalised budget. The focus of the new legislation is very much on the individual and making sure that disabled people have control over their lives and the support they get.
The main points of the new Care Act are:
To find out how the Care Act will affect your care package contact your local authority.
The Care Act means that local authorities now have increased responsibility for those who require care in their area. They have to carry out assessments for those who request them and provide a personalised budget. The focus of the new legislation is very much on the individual and making sure that disabled people have control over their lives and the support they get.
The main points of the new Care Act are:
- Wellbeing. The main focus of the Act is the physical, mental and emotional wellbeing of those who need social care support, with personalisation and individual budgets at the centre.
- Accessing information. Local authorities now have a duty to provide an information and advice service to anyone applying for, or who already receives care.
- The right to an assessment. Disabled people and carers have the right to be assessed for support, whatever their personal or financial circumstances. There’s a new set of minimum criteria that indicates when local authorities have to provide support.
- A personalised plan. If you qualify for care, local authorities legally have to provide you with a personalised care plan to achieve agreed outcomes, detailing the costs involved.
- Payment. Authorities have to carry out a financial assessment to see whether or not you have to contribute towards the cost of your care.
- Advocacy. People with communication or learning difficulties are now entitled to be represented by an independent advocate.
- Tougher Criteria. Care providers will now be subject to tougher guidelines and the consequences will be stricter for those who aren’t meeting the mark.
- More help for carers. Under the Act carers have increased rights. Also, an amendment to the Children and Families Act 2014 means that those looking after a disabled child under the age of 18 are now entitled to support too.
Cheshire and Warrington Carers Trust opens office in Chester Cheshire and Warrington Carers Trust (formerly Cheshire Carers Centre) have recently opened a new office in the new charity hub in Chester City Centre. Based in The Bluecoat School on Upper Northgate Street, they now have a team of 6 working in their newly refurbished offices. The new offices will enable carers to drop in for information, advice and support, and make appointments for benefits advice or Personal Budgets.
The office can be reached on 01244 400502 or via email westcheshire@ cheshirecarerscentre.org.uk
For advice in Cheshire East contact The Care Act Helpline T 01260 288 353 www.adviceCE.org.uk 9am – 5pm Monday to Friday
For advice in Cheshire East contact The Care Act Helpline T 01260 288 353 www.adviceCE.org.uk 9am – 5pm Monday to Friday
To find out how the Care Act will affect your care package contact your local authority.
Carers Trust launches guide to buying care
Carers Trust have launched a series of guides to help carers, families and people with care needs to know what to look out for when buying care. Finding the right care package can be a minefield. This guide helps people to understand what they should look out for when buying care and points people to where they can find quality assured care services from across the network.
Call 0800 085 0307. The Helpline is open Monday to Friday 10.00am - 4.00pm.
Email: advice@cheshirecarerscentre. org.uk
or visit: www.carers.org/cheshire
Call 0800 085 0307. The Helpline is open Monday to Friday 10.00am - 4.00pm.
Email: advice@cheshirecarerscentre. org.uk
or visit: www.carers.org/cheshire
Flintshire disability Forum (FDF)
Offers:
- Wheelchair and walker hire
- Information and Advice
- Outreach Information Service
- Volunteering Opportunities in a supportive environment
- Social group activities and outings.
Opening hours: Monday–Thursday 10am–1pm, Friday 9.30am–12.30
Old Town Hall, Earl Road, Mold, CH7 1AB
Tel. 01352 755546 E.mail admin@flintshirehiredisability.org
Old Town Hall, Earl Road, Mold, CH7 1AB
Tel. 01352 755546 E.mail admin@flintshirehiredisability.org
Gardening
Gardening is a lovely hobby and pastime. It gets you outdoors and gives you that all important vitamin D boost, something that people with neuromuscular conditions are often lacking in. Also, there’s nothing quite like seeing the fruits of your labour!
When you have a disability, it can be more difficult to enjoy pottering in the garden. However, in most instances with some adaptations it can be done. Whether it’s the equipment that you use or the way in which your garden is set up, there are ways around it. And with some help from a PA, friend or family member you are ready to go!
Sometimes standard tools can be adapted and sometimes it might be better to buy something more specialised. When you have a disability it’s important to try and reduce the effort involved, as you don’t want to tire yourself out and overdo it. If more specialist tools can reduce the effort on your part then it is worth paying that bit more.
Equipment and Tools
Carry on Gardening
Royal Horticultural Society
When you have a disability, it can be more difficult to enjoy pottering in the garden. However, in most instances with some adaptations it can be done. Whether it’s the equipment that you use or the way in which your garden is set up, there are ways around it. And with some help from a PA, friend or family member you are ready to go!
Sometimes standard tools can be adapted and sometimes it might be better to buy something more specialised. When you have a disability it’s important to try and reduce the effort involved, as you don’t want to tire yourself out and overdo it. If more specialist tools can reduce the effort on your part then it is worth paying that bit more.
Equipment and Tools
- Make sure you use the right tools for the job and try and choose lightweight tools.
- Think of how you might carry your tools, in your wheelchair, scooter etc.
- Choose tools with longer handles to avoid over-reaching.
- Think of the grip. Some grips are made from soft materials and some have extra wide handles.
- Adapt your tools. You can make standard tools easier to use by putting some plumber’s insulating tubing over the handle.
Find a way that works for you. You may have to break down tasks into small achievable steps. Yes it might take you longer but does it matter. You will achieve an end result. Garden Layout Whether your garden is small or large, it can be enjoyed. You may have moved into a new property and therefore have a blank canvas. For most though, we inherit our gardens but with a bit of thought and ingenuity adaptations can be made so that we can all enjoy our garden. Think of the layout and accommodating as many senses as possible. Consider real grass, artificial grass, paving slabs, raised beds, pots and planters, plants and shrubs, a water feature, bird boxes/bird table. Some things are more costly than others. You can reduce the chances of weeds growing in your garden by covering the soil with a weed suppressing membrane and/ or a thick layer of mulch. Do remember to keep paths clear whether you are ambulant or in a wheelchair or scooter. Raised flower beds Containers or large areas that bring the planting area off the ground, making it easier to reach the soil for planting, weeding and watering. This is ideal if you have a disability particularly if you garden from a wheelchair or scooter. Garden Furniture and Seating This is another important consideration. You might stay in your wheelchair or scooter or you might transfer to a garden chair or bench. Adapted picnic benches are available and here at NMC and we have our very own one built by the NMC Shed Club! Enjoy the garden! The key is to accept that some things might be difficult or not practical for you to do. You may not be able to stand up and dig a vegetable patch but there plenty of other things that you can do. Ask for help. Share the enjoyment with your PA, family member or friend. For example you could choose the plants and explain where you would like them planted and your PA could help put them in. You will have much enjoyment watching them grow and feel a sense of achievement.
Simply “Being” If you simply enjoy just sitting and relaxing in the garden, think of all your senses, smell, sound and sight. Think about having a bird feeder and maybe a small water feature – there’s nothing more relaxing than the sound of water. Enjoy the perfume and colour of the flowers and plants. You can enjoy your garden all year round, just wrap up warm.
Simply “Being” If you simply enjoy just sitting and relaxing in the garden, think of all your senses, smell, sound and sight. Think about having a bird feeder and maybe a small water feature – there’s nothing more relaxing than the sound of water. Enjoy the perfume and colour of the flowers and plants. You can enjoy your garden all year round, just wrap up warm.
The Mobile Garden
This originally started as a creative, versatile solution to the problem of any gardener, who has become less able through age or infirmity, to enjoy their favoured pastime. It is suitable for use all year round, indoors or outdoors. The Mobile Garden workstation is constructed in polypropylene; a durable, light weight and non- perishable material which requires no maintenance; the main, circular, planting tray of The Mobile Garden is 1.2 meters in diameter and 15cm deep with drainage holes in the base and a central divider. tel 0773 398 3768 or visit: www.mobilegarden.co.uk
Gardening for Disabled Trust
Don’t let disability, age or accident stop you. We can help by: - Adapting private gardens to meet the special needs of the disabled gardener - Making grants towards tools, paving, raised beds, wheelchair access and greenhouses for disabled gardeners. - Providing a forum for disabled gardeners by publishing the Garden Club’s magazine. www.gardeningfordisabledtrust.org.uk
Thrive
Thrive is a national charity that helps people with a disability to start or continue gardening. The website contains lots of information on how to make gardening jobs easier and details of equipment and tools that might help you. www.thrive.org.uk
Carry on Gardening
Lots of advice and tips for disabled gardeners, whether you are gardening from a wheelchair, have a weak grip, are one-handed, can’t bend down very easily, are partially sighted, have had a stroke…. www.carryongardening.org.uk
Peta (UK) Limited
They design, manufacture and supply ergonomic tools, aids and assistance devices for disabled people including garden tools. www.peta-uk.com
Royal Horticultural Society
Sharing the best in gardening - www.rhs.org.uk
Beware of dental charges when in receipt of ESA - Karen Pritchard
I am sharing my recent experience of dental care whilst in receipt of ESA, to make you aware of what happened to me so I can prevent this happening to others in our community. On my last routine dental check I was asked by the receptionist if I was in receipt of ESA to claim free dental care. I explained that I was and I signed the relevant form.
I thought nothing more of this, until a few weeks later when I received a letter from the NHS Business Services Authority, with a penalty notice charge of £65 and a further £13 for my unpaid NHS dental treatment! As you imagine I was completely shocked.
I approached the dental Practice Manager and she declined to accept any responsibility over the matter. She informed me that to claim free dental care I needed to be on Income based ESA and not Contribution based ESA. At this point it was too late as I had a bill waiting to be paid. I even provided the dental receptionist with proof of my ESA, as requested, and asked her to take a copy, but she said she didn’t need to.
Had I thought for one minute that I was not entitled to free dental care then of course I would not have signed the form. I was simply asked if I was on ESA and when I replied that I was, I was asked to sign the form.
With the threat of a County Court Judgment or legal action, I paid my bill. Luckily, after continually fighting my case and also explaining my health issues to the board I finally had my money returned.
Please be aware the next time you sign a form with your dentist ask all the relevant questions and take all the time you need to read the form. Don’t feel rushed like I did. The Practice Manager did inform me that her staff needed training regarding this issue, so hopefully the fact that I have highlighted this problem to them, will prevent this happening to another patient at my practice.
I thought nothing more of this, until a few weeks later when I received a letter from the NHS Business Services Authority, with a penalty notice charge of £65 and a further £13 for my unpaid NHS dental treatment! As you imagine I was completely shocked.
I approached the dental Practice Manager and she declined to accept any responsibility over the matter. She informed me that to claim free dental care I needed to be on Income based ESA and not Contribution based ESA. At this point it was too late as I had a bill waiting to be paid. I even provided the dental receptionist with proof of my ESA, as requested, and asked her to take a copy, but she said she didn’t need to.
Had I thought for one minute that I was not entitled to free dental care then of course I would not have signed the form. I was simply asked if I was on ESA and when I replied that I was, I was asked to sign the form.
With the threat of a County Court Judgment or legal action, I paid my bill. Luckily, after continually fighting my case and also explaining my health issues to the board I finally had my money returned.
Please be aware the next time you sign a form with your dentist ask all the relevant questions and take all the time you need to read the form. Don’t feel rushed like I did. The Practice Manager did inform me that her staff needed training regarding this issue, so hopefully the fact that I have highlighted this problem to them, will prevent this happening to another patient at my practice.
Thursday 30 April 2015
I really didn’t want a stair-lift – Anne Craig
By 2007 I was struggling with the 7 inch risers on the stairs in our home and I knew I had to do something.
I tried everything to avoid having that stair-lift! I investigated bungalows in the vicinity, to discover that anything with a similar square footage to our home would cost at least £100K more. Then I researched a proper lift for our home, to discover that it could only be built onto the outside and in the process would block the main access into our garden. The lift was quoted at about £17K and with building costs it was just not feasible. Then I investigated a through-ceiling lift, to discover that it was around £9K and I would lose some of my lounge and – shock horror – my dressing table in the bedroom, with nowhere else for it to fit! No way!!
So I reluctantly started researching stair-lifts. Only to find that in 2007 there was only one brand that could deal with the 2 bends in my stairs. The company was ThyssenKrupp, a Dutch company which at the time sold their Flow 2 range through Acorn. Curved stair-lifts cost more, have to be individually manufactured and have to be more engineered than a straight lift. The cost was £7,500. Gulp. There was a small range of colours but since I was having to redecorate anyway I tried to make the chair look an integral part of the hall stairs and landing. No easy feat!
The chair, which has a safety belt, swivels round 70° to negotiate narrow, steep and bendy stairways and rides on a tube which is securely anchored by 7 metal stanchions along the length of the staircase. As you can see from the photos, it intrudes into the stairs to allow the chair itself to go up and down without touching the walls.
The seat itself is powered by a battery which is automatically recharged when docked at the bottom station. The seat armrest controls take 2 LR14 batteries. Since it is powered by batteries, the stair-lift can be used during a power cut. If the batteries fail, the emergency cord can be pulled out and the chair can descend so you don’t get stuck. There are additionally 2 wireless “call and park” remote control handsets which each take 2 LR14 batteries.
How has it been? I have had the stair-lift for seven and a half years now so it has cost about £1K per annum so far. I expect it to last another 10 years or so with servicing at around £100 each time. It has stopped working 4 times. Twice because I hadn’t noticed the replaceable arm batteries were needing to be replaced, once for a mystery stoppage which the engineer fixed the next day (it happened late at night), and once because the main battery needed replacing (I was informed by Acorn that the whole main power unit had to be replaced at a £2K cost which was completely incorrect when I checked with ThyssenKrupp. Once I complained the matter was sorted out satisfactorily, but if I hadn’t investigated……)
The installation and call engineers need special training so on call out it is important to specify the need for a Flow2 specialist.
There are silly things that I find annoying. It is difficult to open the arm rest cover to replace the batteries, the footrest mechanism is weak (hubby has had to tie it up with a hidden plastic tag), the thing is a bit slow and it does take up a bit
of space at the top of the stairs.
But overall it does get me up and down stairs. I can carry things on it and it enables me to continue living in our home with its easy access, lovely garden and its short distance to the village with its independent shops, restaurants, cafes, pubs and a supermarket. A necessary evil!!
If you are ready for a stair-lift please speak to Sue Walker at the NMC, your OT or an Independent Living Centre before doing anything. It is a lot cheaper if you have straight stairs and you may be eligible for free support. (I was over the monetary threshold). Although I had no advice when I got my lift, the world has changed a lot since 2007!
I tried everything to avoid having that stair-lift! I investigated bungalows in the vicinity, to discover that anything with a similar square footage to our home would cost at least £100K more. Then I researched a proper lift for our home, to discover that it could only be built onto the outside and in the process would block the main access into our garden. The lift was quoted at about £17K and with building costs it was just not feasible. Then I investigated a through-ceiling lift, to discover that it was around £9K and I would lose some of my lounge and – shock horror – my dressing table in the bedroom, with nowhere else for it to fit! No way!!
So I reluctantly started researching stair-lifts. Only to find that in 2007 there was only one brand that could deal with the 2 bends in my stairs. The company was ThyssenKrupp, a Dutch company which at the time sold their Flow 2 range through Acorn. Curved stair-lifts cost more, have to be individually manufactured and have to be more engineered than a straight lift. The cost was £7,500. Gulp. There was a small range of colours but since I was having to redecorate anyway I tried to make the chair look an integral part of the hall stairs and landing. No easy feat!
The chair, which has a safety belt, swivels round 70° to negotiate narrow, steep and bendy stairways and rides on a tube which is securely anchored by 7 metal stanchions along the length of the staircase. As you can see from the photos, it intrudes into the stairs to allow the chair itself to go up and down without touching the walls.
The seat itself is powered by a battery which is automatically recharged when docked at the bottom station. The seat armrest controls take 2 LR14 batteries. Since it is powered by batteries, the stair-lift can be used during a power cut. If the batteries fail, the emergency cord can be pulled out and the chair can descend so you don’t get stuck. There are additionally 2 wireless “call and park” remote control handsets which each take 2 LR14 batteries.
How has it been? I have had the stair-lift for seven and a half years now so it has cost about £1K per annum so far. I expect it to last another 10 years or so with servicing at around £100 each time. It has stopped working 4 times. Twice because I hadn’t noticed the replaceable arm batteries were needing to be replaced, once for a mystery stoppage which the engineer fixed the next day (it happened late at night), and once because the main battery needed replacing (I was informed by Acorn that the whole main power unit had to be replaced at a £2K cost which was completely incorrect when I checked with ThyssenKrupp. Once I complained the matter was sorted out satisfactorily, but if I hadn’t investigated……)
The installation and call engineers need special training so on call out it is important to specify the need for a Flow2 specialist.
There are silly things that I find annoying. It is difficult to open the arm rest cover to replace the batteries, the footrest mechanism is weak (hubby has had to tie it up with a hidden plastic tag), the thing is a bit slow and it does take up a bit
of space at the top of the stairs.
But overall it does get me up and down stairs. I can carry things on it and it enables me to continue living in our home with its easy access, lovely garden and its short distance to the village with its independent shops, restaurants, cafes, pubs and a supermarket. A necessary evil!!
If you are ready for a stair-lift please speak to Sue Walker at the NMC, your OT or an Independent Living Centre before doing anything. It is a lot cheaper if you have straight stairs and you may be eligible for free support. (I was over the monetary threshold). Although I had no advice when I got my lift, the world has changed a lot since 2007!
Stair Lifts
When you have a disability there comes a point when climbing stairs can become very exhausting and risky. When you get to this stage it is worth considering the options. You could think about moving (this can be very costly and you might not either want to, or feel ready to move to a single-storey property) or, stay where you are and consider installing a stair-lift.
Choosing a stair-lift
It is really important to choose a stair-lift that best suits your needs, lifestyle and works with your home. Stair-lifts can vary enormously in price.
Before placing an order it is advisable to have your stairs assessed so that you can choose the right stair-lift for your type of stairs. They will:
You can get either a straight stair-lift or curved stair-lift. Straight stair-lifts can only travel in straight lines and therefore cannot turn a corner or go around a bend. They can be more suitable for narrow stairs. Curved stair-lifts have tracks and are designed to suit staircases that turn corners. They tend to have a snugger fit.
Various chairs can fit on to either straight or curved staircases. Each chair has different features and benefits. You can opt for a manual swivel seat or a powered swivel seat.
When companies visit your home there should no pressure and no obligation. It is a good idea to have a second person with you, a PA, family member or friend. Some companies favour one maker of stair-lift, others do not. Remember to ask about a warranty and service plan. Local Independent Living Centres are also a good source of advice.
Delivery, Installation and After Sales
Delivery tends to depend on the type of lift you order. The more complex the order then the longer the lead time. Most stair-lifts only take a few hours to install but the more individualised the stair-lift then the longer it will take. Occasionally, slight alterations may need to be made prior to the lift installation. It is important to find out about what support is available should something go wrong with the stair-lift and also about servicing.
Benefits of having a star-lift
The thought of having a stair-lift can be daunting. However, try and think about the benefits of having one.
Choosing a stair-lift
It is really important to choose a stair-lift that best suits your needs, lifestyle and works with your home. Stair-lifts can vary enormously in price.
Before placing an order it is advisable to have your stairs assessed so that you can choose the right stair-lift for your type of stairs. They will:
- measure your stairs and the supplier will be able to tell you if you need to make any adjustments to accommodate the new stair-lift for example move a radiator.
- ask if you are left or right handed and suggest which side the controls should go.
- measure the length of your leg when sitting to ensure that you don’t graze your knees when going up and down. They will want to know your weight and will ask about your mobility.
- explore the option of adding power features which might be useful in the future.
You can get either a straight stair-lift or curved stair-lift. Straight stair-lifts can only travel in straight lines and therefore cannot turn a corner or go around a bend. They can be more suitable for narrow stairs. Curved stair-lifts have tracks and are designed to suit staircases that turn corners. They tend to have a snugger fit.
Various chairs can fit on to either straight or curved staircases. Each chair has different features and benefits. You can opt for a manual swivel seat or a powered swivel seat.
When companies visit your home there should no pressure and no obligation. It is a good idea to have a second person with you, a PA, family member or friend. Some companies favour one maker of stair-lift, others do not. Remember to ask about a warranty and service plan. Local Independent Living Centres are also a good source of advice.
Delivery, Installation and After Sales
Delivery tends to depend on the type of lift you order. The more complex the order then the longer the lead time. Most stair-lifts only take a few hours to install but the more individualised the stair-lift then the longer it will take. Occasionally, slight alterations may need to be made prior to the lift installation. It is important to find out about what support is available should something go wrong with the stair-lift and also about servicing.
Benefits of having a star-lift
The thought of having a stair-lift can be daunting. However, try and think about the benefits of having one.
- It will reduce the amount of effort required by you. This is particularly important at the end of the day when you are likely to be really tired as you climb the stairs to bed.
- As a result you will conserve energy.
- It will give you greater independence.
- It will allow you to go upstairs more often if you need to. There’s nothing quite like regaining the pleasure of going up and down stairs whenever you like.
- It will allow you to be with your family.
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