Monday 1 August 2016

My Stairlift by Jon McVey

The Spring 2015 edition of One Voice carried two first-rate articles about stairlifts, including Ann Craig’s account of buying her stairlift.  The following are a few random thoughts about my experience.

1. Making the decision.  This took some time, climbing the stairs had become gradually more difficult, but when is the right time to take the decision?  I wanted to continue climbing stairs as long as I could, but the balance though was safety, so after a serious fall we made the decision to do something.

2. Install a lift or move. A bungalow would make life simple, however the decision was easy for us. We like our house, and for reasons of family and children, we need to live in the area for the time being and bungalows locally are in short supply and expensive.

3. Beware of free independent stairlift guides. I sent for a free guidebook advertised in the back pages of a newspaper. I was looking for a stairlift so it seemed like a good idea. Within a few hours I was receiving sales calls, some assertively, even aggressively seeking appointments. By contrast I contacted manufacturers and local suppliers directly, all of which were very helpful. By the way, the guide had no more useful information than any of the brochures.

4. What to do about the door at the bottom of our stairs. The position of the door meant that the rail of our straight lift would be a trip hazard. The solutions were to have a folding rail or a moving rail. The latter seemed like the best option for our household.  The system works well although it makes an annoying beep when it moves. It is another moving part so it does need some maintenance so for piece of mind I have kept a service contract.

5. Style. The numbers of options of colours and designs are sadly very limited, so we decided the colour we liked best and redecorated.  We needed a new carpet, so we had this fitted before the lift was installed. We keep a spare piece in the attic to make good when we move house.

All in all, the stairlift has made my life much easier and there is a sense of freedom. I can access upstairs again  during the daytime  and can again carry things up and down stairs. Little things, but it makes such a difference.



Useful Cooking Gadgets

Waste Disposal / Recycling
www.IKEA.com
UTRUSTA pull out waste sorting tray    £18 each
Holds various sizes of sorting bin that pull out for easy access



Bar Stool and Pull Out Trays
IKEA Franklin Bar Stool  £25 . 
Tray Runners  www.ironmongerydirect.com (fitter made and installed trays in a couple of hours) In the food preparation area I have a stool and two very useful pull out trays that enable me to get my legs under the working area. Of all the extras I have fitted these have proved most useful.


Taps on the Front of the Sink
www.salonsupplies.co.uk
REM Monobloc Mixing Valve in the front and a standard mono mixer tap at the rear. Total cost about £150  
There is a VOLA unit installed at NMC. Try as I may I could not find anything similar but cheaper on line but my solution was found during a trip to the barbers.


Remote Controlled' Cooker Hood
FSH for me means that raising my arms above my head isn't easy. I was quoted £1500 for a fully functional remote controlled cooker hood. Instead I opted for a HOTPOINT hood which I am able to control it from switch which was installed in the bank of labelled switches.

Moving Heavy Appliances on Worktop Bench
SMULA Tray IKEA £1 
I am less able to lift appliances from drawers and a simple solution that works for me is to “store” them out of the way on the worktop is such a way that I can slide them to a more accessible position when I need them. My simple cheap solution another IKEA purchase.

Cooking Baskets 
Pans of hot water are heavy and dangerous. Wire baskets used for frying chips, make it easy to strain the vegetables, as long as they are not peas, without moving the pan.

We are grateful to Rodger Marshall for providing all the suggestions apart from the cooking baskets.
For the next edition we are looking for websites and products along our theme of keeping safe. Please forward any suggestions to jon.mcvey@nmcentre.com

Useful websites - Sports Hobbies and Wellbeing

www.wheelsforwellbeing.org.uk
Think you can't cycle, think again. Wheels for Wellbeing (WfW) is an award-winning charity supporting disabled people of all ages and abilities to enjoy the benefits of cycling.

www.wheelpower.org.uk
This website enables people with disabilities find a sport they enjoy. They advertise opportunities throughout the year to try wheelchair sports.

www.limitlesstravel.org  
Angus Drummond, who has muscular dystrophy recently launched this disability travel website with the ability to rate holiday destinations in terms of accessibility and disability "friendliness".

www.zipworld.co.uk
Fancy plunging to the ground on the worlds fastest zipwire. The Velocity at Zip World Penrhyn, Bethesda is suitable for wheelchair users but only by prior arrangement.

www.livingmadeeasy.org.uk/leisure/equipment 
Living made easy's leisure section provides free impartial information on various items of equipment and some adaptations available to help with a range of indoor and outdoor hobbies.

www.the-dps.co.uk
The Disabled Photographers' Society promotes and supports people with a disability and want to enjoy photography.

Kitchen Tips - My New Kitchen Design by Rodger Marshall

I have recently had an extension to my bungalow to accommodate a new kitchen. I am fortunate in that I had the funds to do it, but I found it very difficult to get any meaningful advice on what to do and what my options there were.  My Local council Occupational Therapist would not help even with the planning stage as I was effectively too well off!  She suggested AKW who install kitchen solutions for people with mobility needs or get some private OT advice.  I called around and became more and more disillusioned with lack of advice in my locality, West Sussex.

I remember visiting the NMC and seeing some of the measures you had incorporated into your kitchen. 

Of all the people I spoke to recently Matthew was the most helpful. He gave me some excellent advice regarding worktops, cupboards and drawers and general accessibility which I incorporated into my design. 

To get some inspiration I persuaded my family to wheel me around the Ikea Superstore in Croydon and looked at online videos. 

I did get some ideas but my budget did not stretch to AKW. In the end I chose a local builder who also happens to be my neighbour to build the extension and fit the kitchen.

My builder uses Howdens to supply the kitchen units and they offer a free kitchen design service. Needless to say that their free service is limited and they have minimal experience designing a kitchen for somebody with mobility issues. 

Prior to the building work I had given the layout a lot of thought and produced my own draft before looking at Howdens plan.  I was able to sit with their planner and their more sophisticated programme and between us we came up with a suitable workable design for the units/cabinets etc.

I believe I have some practical and money saving tips to share with anybody contemplating refitting their kitchen.
   
Matthew strongly suggested having taps at the front edge of the sink rather than the traditional setting at the rear.  After a lot of searching I believe I have sourced a cheaper alternative to the VOLA taps he suggested, saving or rather not spending £400 yet achieving the same outcome.

 
FSH for me means that raising the arms above my head is becoming more and more difficult. Hours and hours searching on internet for remote controlled cooker hoods yielded nothing suitable, but I did find one that will restart on the previous settings if turned off at the mains.

I have found and installed cheap functional plinth heaters to keep me warm and which can be controlled by wall switches.

Pull switches rather than traditional rocker switches are easier to grab hold of and reduce the likelihood of a fall when twisting to turn on the lights on entering a room.   

We utilised the cutouts for the sink and hob to manufacture the pull out shelves and by buying a pair of extension runners from www.IronmongeryDirect.com my builder installed 2 bespoke pull out worktops for less than the 'off the shelf' Howdens price.


Similarly I found that it is possible to install two pull out waste sorting trays side by side under the sink. 

I find the pull out larder units easy to use and access, well worth the investment.

I am sure that like me most sufferers have developed coping mechanisms. But just maybe some of the tips and tricks I have found may help others. Nothing that a competent, empathetic, OT specialist might suggest, but working without this support these are some of the things I incorporated in my new kitchen.

The Shed Club, an interview with Sajay Vaja

 I've been hearing a lot about this 'shed club' at NMC. I've seen the grey 'shed' with the shutter door in the car park. I've seen a variety of good looking, accessible items and really creative ideas for sale too. I was curious, so I caught up with some of the clubbers to find out more....  


Where did the idea come from? 
Sue Walker and Matthew were looking for an outdoor table for the Centre, suitable for both able-bodied and wheelchair users. The cost was just crazy so they approached me (Melvyn) and asked if I could make one for less than that price. So I had a go, and others joined in to help. It went really well...and that's where the idea came from.  

 
Who's in the Club? 
There are 6 of us at the moment and we have many different skills and abilities...we have a builder, a master roofer and a smasher and also others with no previous experience.  

A smasher? 
Yes, Peter - he breaks up the pallets we use for planters. He was a draughtsman and a carer, and used to sit in his car but began by helping us to build the table. We would be lost without him and he loves being involved - like we all do!  


What sort of things have you made to date? 
Well, after the table we've made many planters of various sizes, shapes and colours. We have also made a duck-hut, a very large log storage unit, an electric scooter storage unit, sand pits and planters which are wheelchair-friendly and also a large treasure chest. We have also made a Leopold garden bench, a bird-table and more recently a tray and a vase. We prefer to make smaller items like planters as they are easier to handle and are more cost-effective.  

When do you meet and can others join? Do you need any special skills? 
We meet every Tuesday and Friday, with a 'no lone worker' policy. Our door is open to anyone interested, although there is limited space. No special skills are required other than a good sense of humour!  

Anything else you'd like to add? 
We've raised well over £3000 for the NMC to date and, yes, we do take orders although at times there may be a delay for completion. It has given us all a purpose and a sense of achievement. We have great camaraderie and have all learnt new skills while overcoming physical problems. And we turn trash into treasure along the way. By using pallets and second-hand wood we are helping the environment, and we sell what we make which is a bonus for NMC. If you'd like to get in touch, please come and say hello at the Shed, or through Denise Boyall. 

NMC Titans

The NMC Titans is a newly established powerchair football team based at the NeuroMuscular Centre. The team was set up in January following very successful taster sessions run as part of the summer’s sports days. The team is being co-ordinated by James Taubman (Manager) and Bryn Edwards (Chairman).

Sara Dickinson, a development officer from the Wheelchair football association, helped kick-start the team by providing wheelchairs and other necessary equipment on a fortnightly basis allowing for some initial sessions to go ahead, sparking a fantastic amount of interest from a variety of people associated with the NMC. Unfortunately this has now come to an end and the club now needs to become self-sufficient with their own equipment and storage space, which as you can imagine doesn’t come cheap! Lyndsey Cannon, from the fundraising team at the NMC, is doing a fantastic job applying for and securing funding from various sources.

The team is soon to be affiliated with the Cheshire FA and will soon also be affiliated with the WFA allowing us to make connections with other local teams and begin to look at competing in the regional or national leagues. 

The Titans currently use the sports hall facilities at Manchester Metropolitan University campus in Crewe and are looking to make this the long term training facility with the possibility of on site storage.  

The team so far has had a wonderful response from those involved and others who have heard about it and the Titans are gaining momentum very quickly. It has attracted many people, men and women, from 18 to 53 and keeps on attracting new very enthusiastic members. It is a very exciting and worthwhile venture for the NMC to develop and we hope it will continue to grow into a top league team in the not too distant future.

The NMC Titans are still gaining momentum in preparation to become a regular fixture in the NMC calendar. The team is very grateful for all the money that has been put towards the running of the team and have bought the necessary equipment to begin regular training including sets of goal posts and cones. The only thing missing now is sports chairs. As these are slightly more expensive funding them will take more time however as soon as we have them the Titans we be in full force training in preparation for a competitive future. We hope everyone can get behind the team and the NMC Titans can achieve great things. 

Are you interested in either joining as a player or coming to watch?  The Titans are the NeuroMuscular Centre team and meet at MMU, Crewe Sports Hall. For details contact 01606 860911, james.taubman@nmcentre.com, bryn.edwards@nmcentre.com or see James Taubman or Bryn Edwards at the NMC

Maintaining your Mental Well Being by Karen Pritchard

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

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

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

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

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

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

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

Struggling to drive your wheelchair? by Mark Chapman



Don’t worry there are ways around it. A few months ago I began struggling driving my wheelchair because my hand and my grip had weakened, so I was finding it difficult to move my controller to drive, my hand was forever falling off my control, it was always in need of repositioning and when my hand got cold I couldn’t drive at all. I thought that was it, I wouldn’t be able to drive anymore but it wasn’t. I spoke to my wheelchair dealer who provided my wheelchair and he told me I could get a mini joystick, which is a lot smaller than the usual control and it is more sensitive so you hardly have to move it to drive the wheelchair. This is one of the best pieces of equipment I have. It’s a lifesaver. Depending on the make of your wheelchair there are two manufacturers of mini joysticks, Dynamic for Sunrise Medical and RMS for Invacare, your wheelchair dealer will know which you need.
  
I now have a lot more confidence, I can control my wheelchair 10 times better and I can get around much easier without any worries. It cost around £1,400, I know it sounds expensive but you can get funding for it, I got funding from a charity called React. You can download an application form from http://www.reactcharity.org/applications.php 

Acupuncture - My Experience by Karen Pritchard



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

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

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

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

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

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

Exercise in the NeuroMuscular Centre


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

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

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

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

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

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

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

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

Bryn Edwards  

My experience of moving property by Peter Marley

I attend the NeuroMuscular Centre regularly for physiotherapy and also work in the graphic design studio.  I have FSH Muscular Dystophy. 

At the start of June 2012 I moved into a new flat at Llys  Alarch, provided by Clwyd Alyn housing association, as I was struggling to live in my house due to the stairs. It was not disabled friendly and I kept having falls, so I decided to take the flat offered to me. 

I have a mobility scooter which I kept outside my flat, under my window.  This was not ideal but, Clwyd Alyn knew about it when they offered me the flat. I kept securely with a cover over it, charged it through the window and didn’t see a problem with that. There simply was no other option as I couldn’t get the scooter in my flat! 

After 3 years the housing officer spoke with me and told me that for health and safety reasons I could no longer keep my scooter where it was and therefore it had to be moved as it was a trip hazard.  I fought my corner and told them that it had been there since I had moved in and which they knew about but, with no luck.  I had to provide the adequate requirements needed by Clwyd Alyn. 
Clwyd Alyn informed me I could stay in my flat if I funded a safe electricity point to the scooter and paving slabs to mount it on.  I wasn’t prepared to do this and it didn’t seem right that I had to fund the works. 



In March 2015 I was offered a flat by Wales and West -  a new development in town with disabled facilities and a communal room to house and charge my scooter.  I would access my new flat via a lift.  I also have a key fob to access the building, and the room for my scooter. 
I decided to take them up on this and moved in on 16th March 2015. 

I did enjoy my time at Llys Alarch but, where I'm at now has much more to offer me.  I'm closer to the town and find that I can get around on my scooter outdoors more accessibly than at my other flat locality. 

I have made lots of new friends since the move and have a better social life.  I've even joined a Gym and accompany a friend to Slimming Word.  I decided to join and have lost almost 3 stone!  I needed to do this for health reasons.  I have achieved this by healthy eating. I'm eating more now than before and the weight it coming off because now I'm eating the right foods. 

I have recently purchased a new scooter - with a difference!  It’s a drive mobility sports rider – which looks like a Harley Davidson!  Its fantastic, and gets admired everywhere I go. I plan to go on holiday later in the year and I'm looking forward to the next phase of my life. 

Fall Monitors - Jon McVey


 

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

Stadium Design Research

Would you like to participate in research to explore stadium design  and the facilities needed  to enable independent wheelchair access to sporting events?


What represents meaningful provision for wheelchair users in English football stadia?
JEANETTE DODD, Doctoral Researcher, SURFACE Inclusive Design Research Group
School of the Built Environment (SOBE), University of Salford.

Jeanette Dodd, who has FSH MD, is recruiting for participants in her Ph.D research at the University of Salford. If you use a wheelchair to attend, or try to attend, live events at football stadia, are aged 16 or over and would be like to take part, then please contact her at the email address below.

The aim of her PhD. research is to examine what represents meaningful provision for wheelchair users in English football stadia, identifying features that can act as barriers to limit accessibility, or which can enhance accessibility and promote inclusion. The objectives are to:
  1. Appraise how society views disability and how society is including and excluding wheelchair users;
  2. Assess the design process, the legislation, the underpinning regulations, the guidance and how this meets the needs of wheelchair users;
  3. Explore the accessibility of spectator sports and appraise the design guidance for stadia that can facilitate access to it;
  4. Investigate the everyday user experience when attending, or trying to attend football stadia;
  5. Understand how provision at football stadia is determined in practice;
  6. Provide a critical synthesis of the extent to which the needs of wheelchair users are being met; Recommend the changes and improvements that need to be made so that wheelchair users are better accommodated in football stadia.
Jeanette will interview you to capture the everyday experiences of disabled supporters who are wheelchair users. If you have attended, or tried to attend, a live event at a football stadia as a wheelchair user, Jeanette would be interested in hearing from you. 

The NeuroMuscular Centre has kindly offered the use of a private room for the interviews, which should take between 30-45 minutes. Participation is entirely voluntary, although interviewees receive a small ‘thank you for taking part’ gift and travel expenses are paid at 45p per mile. All participants will remain anonymous. Data collected will be kept strictly confidential and will be related to your code number rather than your personal details.  If you are interested in taking part, then please get in touch. 

CONTACT DETAILS: * Email:  j.dodd3@edu.salford.ac.uk
*        Jeanette Dodd, SURFACE Inclusive Design Research Group, Room 423, 
          Maxwell Building, University of Salford, The Crescent, Salford M5 4WT