This section of the website is designed for people directly affected by MND to share useful information.
This may be:
- Tips and hints about the practical aspects of living with the disease.
- Experience holidays or short breaks.
- Information about equipment or technology.
- Involvement with research or other projects
- How you're coping with MND
Please contact us at firstname.lastname@example.org and pass on anything you would like us to publish. You don't have to write it, if you prefer to just pass on the details we'll do the rest. We may use all or some of the information in the newsletter, here, or on social media.
Other MND Website Links
The Association is constantly updating its Publications and Resources. The link below will help you decide if you want to know more about the many aspects of living with MND on a day-to-day basis. There are many different formats to choose from and help is always available if you want something explained in more detail. All the information you need.
mymnd is one of the helpful sites to learn about breathing support and ventilation in MND. myTube is an award-winning site that gives information about nutrition support and feeding tubes and has been used extensively over the past few years.
Many people living locally with MND have been involved with the making of these excellent resources.
Technology: The Neater Eater
Dave was issued with a Neater Eater device when his hands were becoming very weak and feeding himself was becoming more and more difficult.
His wife Maria kindly made a video to demonstrate its functions.
Watch the video below.
Coming to Terms... an experience of coping with MND:
Rhys Evans explained here how he felt he came to terms with his MND diagnosis. We know MND presents in very different ways for different individuals but when Rhys explained the various phases, at a previous meeting, there were nods from others in the room.
In the beginning, immediately after being diagnosed with Motor Neurone Disease, what I felt was a shock, the shock of bereavement, fear that death was round the corner, of being deprived of food and drink and fed through a tube, of having to wear a breathing mask, the sense of finality. At this stage, what I am here calling
Phase One, I was just simply frightened. I had lost all sense of the future: this was the end of time. I remember in the early days waking up at night and thinking I’d been kidnapped, or that there were brambles tangled around my head, and tearing at the mask to try and get free. I remember the grief I felt at never being able to eat a cheese and onion sandwich again or drink a cup of my favourite Darjeeling tea. Phase One was characterised by a sense of shock and loss. I don’t know how long it took, but after a while, some weeks or months, I began to realise that things were changing. I remember one milestone day when I surprised myself to discover that I was making a reading list. It meant that I was beginning to think of the future again. I was taking an interest in things.
I spent two months in hospital, was expertly cared for, and eventually discharged and able to return home. I had been very much looking forward to this moment. My partner visited me every day and has played an indispensable part ever since this illness began. So, then, did our house and garden, which we had imagined and developed together during the previous 18 years or so. From now on, of course, our relationship had to change. I was much more dependent on her than I had been, and have become more so ever since.
Phase Two was a process of recovery. This does not mean ‘cure’, because it is clear that there is no cure. It is a slow process of acclimatisation, an accommodation to the state of affairs. It became possible to talk about death and to begin to make arrangements for a future after my death. The big taboo was taboo no longer. I talked to my seven teenage grandchildren and made sure that they understood exactly what was going on. There must be no secrets.
If Phase Two was similar to the repair and reconstruction that might take place after a car crash, then Phase Three was like getting the vehicle back on the road again. Indeed I think I can remember the moment when, as I used to before I even knew what MND stood for, I started saying again, “I’m going to live forever!” Sooner or later that optimism returns.
Early on in the process, my partner decided she would become my full-time carer for as long as it took. She gave up any immediate prospect of taking on any full- or part-time work, applied for the Carers’ Allowance, and we’ve lived with the help of my pension since then. My survival would hardly have been possible without her. Now, after multiple discussions with consultants, physiotherapists, occupational therapists, nutritionists, and other experienced people, added to my own first-hand experience of MND, I am comfortable with two facts.
One is that there is no knowing how long this will go on: it could be months; it could be years. All forecasts so far have been wrong. In that respect, this situation is no different from what everybody else experiences, in a Coronavirus epidemic or ordinary daily life.
The second is that, because this is a progressive disease, things change. I have a BiPAP breathing aid because my ability to breathe is diminishing. I am fed through a tube because my normal swallowing mechanism no longer functions properly and food particles would otherwise travel down into my lungs. My right leg and my right arm are both weakening and turning rebellious, and my left arm and leg are slowly following suit, a situation which has developed quite recently. It was recognising these two facts that brought Phase Two to a close. It was the point at which I was able to look reality calmly in the eye. We kept talking about it and adapted as best we could.
The onset of the Coronavirus brought its problems, of course, as it did for everybody. We decided to suspend the services of carers, and my partner took on all the tasks they had fulfilled over the previous months, the tube feeding and the personal care. We have followed the lock-down guidelines strictly since the end of March.
So we don’t know from week to week what will be the next obstacle nor when it will come. And each obstacle brings with it new demands on my partner and carer and are by no means a disabled-friendly house.
For me, possibly the least welcome change has been the unwillingness of my digestive system, even after two years, to accommodate itself to its new diet of tube-fed liquid food. I have to cope with the daily carousel of diarrhoea and constipation: my inner workings have become the object of almost daily conversation and humour in our household.
Many years ago I remember speculating that the most intolerable aspect of old age would be incontinence, but I am discovering that “habit is a great deadener”, and gradually the intolerable becomes tolerable.
Phase Three has meant getting used to a new kind of normal, subject to the tiresome constraint imposed by the MND, but normal nonetheless. It’s like an old car battery that needs more and more frequent charging, is unwilling to function properly first thing in the morning, and rapidly runs out of charge once it gets going.
A great account from Rhys... if you'd like to share your experience please get in touch.
Holidays and Short Breaks
Are you thinking of planning a holiday or short break?
Some people cannot wait to start planning a trip. An opportunity for a change of scenery or possibly a rest away from some of the domestic duties for a Carer. The prospect of staying away from home can seem a bit daunting for others and ensuring the right environment and provision of the necessary equipment takes time and effort. The work and preparation can be part of the fun though and the rewards of the sea air, countryside views and seeing new faces beneficial to all.
At a recent Carers meeting, we discussed planning for a holiday. People have different needs according to what effect MND has had on them, and we are all different in the type of holiday we prefer. Later Chris from Rotherham shared some useful tips and links to places she and her husband had tried over the past 16 years with some tips picked up from their experiences. Thanks to Chris for taking the time to do this.
"In passing on this list I would like to stress that they need to be looked at closely, as some aspects are more important/ crucial to different people. What one person or carer can cope with differs greatly from another. The type of accommodation we would need now would require much more equipment than these provide.
A lot of places have arrangements with local mobility companies where you can hire extra equipment. Adds to the cost though. We hired a rise and recline chair when we went to Chichester. Just putting ‘accessible accommodation’ into google for the area you are interested in usually brings up a good variety. As before just check the facilities. We found so many that said wheelchair accessible but then had internal steps or a bath!" Don't take the online information at face value. Speak to someone if you can.
- Hidelow House Cottages B&B, Bed & Breakfasts in Worcester - The UK Accommodation Guide Award
- Canute Cottages - Award-Winning Holiday Cottages in West Sussex
- The Anchorage, Accessible holiday cottage Norfolk situated in Cromer
- Our Bench, Lymington Self Catering, New Forest Accessible self-catering accommodation
- Annie's Cabin by Ludlow Ecolog Cabins
- The Coach House, Crookham
- Luxury Lodges, Aberdeenshire Hill of Maunderlea
- Acorn Lodge - Holiday Accommodation in Shropshire
- Hucklesbrook Farm New Forest Holiday Cottages
The Association also has information to help.
More holiday companies are providing services for people with disabilities than ever before. Other useful links include:
If anyone else would like to share their experiences of a holiday or break please contact us.
The peak District National Park Access Officer is Sue Smith. She recently launched a book of official routes for ramblers with mobility problems that cost £5.95.
Miles without Stiles highlights walks of interest with wider paths and no stiles that are graded, so people can work out the best walks taking into account their mobility problems or wheelchair type. There are also fully accessible wheelchair-friendly walks led by qualified walk leaders. The walks start and finish from the venue on a good level surface where the pace and length of the walk are set by you (30 - 75 minutes)
Disabled parking and accessible toilets (sometimes radar keys) are available – bring a packed lunch or get some lunch at a cafe nearby.
If you need someone to support you please don’t come on your own as unfortunately, we can’t offer any additional support. Please ring with any questions.
Wear appropriate shoes and check the weather forecast and bring waterproofs or a brolly if necessary.
For more information and to book your place contact;
Tom Whittaker on 07736 822305; Email: Tom.Whittaker@emhcareandsupport.org.uk
For more information about the walks themselves (the practicalities) contact:
Sally Wheal on 01298 84992; email@example.com
Neil and Christine from Rotherham try and get away regularly in the UK for holidays or short breaks. Christine says that she always rings ahead to check that any equipment they need is in place. The best hosts will also help to hire additional equipment if needed.
Earlier this year they went down to Canute Cottages on the shore of Chichester harbour. They would recommend Granary cottage and said the location was lovely with a superb accessible footpath along the sea wall.
MND Scotland - Tralee Bay Chalet is available for families affected by MND throughout the UK to hire.
For information on accessible places take a look at Euan's Guide
Euan's Guide features disabled access reviews from disabled people and their friends and families "The aim of Euan's Guide is to empower disabled people by providing information that will give confidence and choices for getting out and about." It might be information about hotels, restaurants, or attractions. Guide books go out of date so quickly, this website is really useful in sharing recent experiences from people who have "been there, done it" and are happy to pass on what they've learned.
Kirstine Booy from Rotherham sent us the following article about a short break in France.
Last summer Mick and I decided we wanted a long weekend in Lille and to travel by train. Having used a company called Railbookers previously we decided to see what they could do for us.
We needed to get from Rotherham to Lille complete with Mick in a wheelchair. They and the rail companies made the trip stress free for us. We got on at Rotherham and went to Doncaster where we were met and helped to transfer platforms.
At Kings Cross, we were helped across to St Pancras to catch the Eurostar, where they have a dedicated disabled check-in desk and staff to help. Because Mick was in a wheelchair we were automatically upgraded to Business Class which also meant we were fed! At Lille again we were met at the station. The guy asked where our hotel was and realising that it was just across the road took Mick across and into reception. Our return journey was just as easy and at Kings Cross, we were put on the train as soon as it came in. All in all a very stress-free experience.
Just as an aside if you are thinking of going on holiday further afield Eurocamp have a few disabled access caravans at a few of their sites. The one we stayed in was in Serignan near Beziers in the south of France and was very well thought out. However, if you don't wish to travel that far they have a site in Northern France that also has disabled access caravans.
Don’t Give Up. This is Emma's account of booking a major concert in 2019. Sadly Emma died later that year.
My name is Emma and I have Bulbar Onset Motor Neurone Disease. I was diagnosed in June 2017 at the age of 36. Since then I have tried to pack in everything I can do, and things that I’ll never get to do again.
So...We ordered tickets in October last year for Pink!!!! She’s my idol and has been since her very first hit back in the day. In October I was more mobile than I am now, I could walk without the worry of tripping or my legs failing me.
Now things have changed so much that when I’m standing....it’s all I think about.
My personal assistant and best friend Amie tried to talk to Ticketmaster and Anfield FC to tell them about the change of circumstances.
They wouldn’t talk to her, only me, but I can’t speak. I sent an email as requested, only to be told they couldn’t do anything to help. We checked to make sure I could get to my seat but was told I was not allowed a wheelchair in the venue only to turnstiles. There are escalators and lifts, but around 30 steps to our designated seats. I honestly thought it would be my very own ninja warrior day. I could not miss that gig!!!!
With no joy with Ticketmaster and Anfield Stadium, I decided to contact our local newspaper, a day later a reporter from the Rotherham Advertiser contacted me. After the reporter and our very own Ann Quinn being involved, they offered me and Amie the hospitality package with a wheelchair space and a meal for £600 each! We were in a party of 4. We couldn’t accept it, we wanted to share the moment with our friends and we simply couldn’t afford it. I can’t eat or drink anything anyway as, I have a peg.
So we declined, time went on...still not getting anywhere. Eventually we struck gold when Anfield rung us, saying they could fit us in with my wheelchair, if our two friends were seated a few rows below. We had to take that offer, it was less than a week to go.
A lovely lady called Jill always kept in contact, ensuring everything was sorted.
So the day came..On our way to Anfield Stadium, Jill rung Amie to say our new tickets were waiting.
So it was time to get even more excited than ever, then we got our merchandise which we all fell in love with!
We got there, collected our tickets and the atmosphere was amazing even before Pink came on stage dangling from a massive chandelier. It really was breathtaking throughout, she ended the performance flying around the stadium. Fantastic show. We all loved it, and it wouldn’t have been possible if it wasn’t for Amie, Ann Quinn and Adele from the Rotherham Advertiser for all their input and help and always ringing up the stadium.
I’m forever grateful.
Thank you so much