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 disease.
- Experience about holidays or short breaks.
- Information about equipment or technology.
- Involvement with research or other projects
- Please contact us; email@example.com 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.
Coming to Terms an experience of coping with MND.
At a group meeting earlier this year Rhys from Sheffield explained how he felt he'd come to terms with his MND diagnosis. We know MND presents in very different ways for different individuals but when he explained it's various phases, there were nods from others in the room. We asked him if he'd expand his thoughts and put them in writing for us and we're very grateful for this honest and moving account of how he's coping.
At the beginning, immediately after being diagnosed with Motor Neurone Disease, what I felt was 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 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 round 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 had 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 a 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 for ever!”
Sooner or later that optimism returns again.
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 Corona virus epidemic or in 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 own 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 on our by no means 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 none the less. It’s like an old car battery which 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. Even so maybe – you never know – maybe I will live for ever!
Thank you Rhys.
At home & using technology instead of face to face visits:
Thanks to Martin for this really useful information.
Ann recently asked us about how we were finding communicating with the various Health Professionals.
Somewhat surprisingly, I find myself as a technology trendsetter in this regard and am happy to share my experiences!
I've used Skype in the past for a videoconference chat to family. It works OK, albeit connections can be a bit flaky. My understanding is that public sector organisations are reluctant to use Skype, as it is not especially ‘secure’. Although why Russian hackers might be interested in knowing my drooling challenges is rather beyond me!
In more recent times, I’ve been introduced to Zoom, which I believe is widely used for professional videoconferencing. The first time was for an MND research project run by the University of Southampton. Ahead of our scheduled interview, I was sent details of how to download the Zoom App (a simple process via your App Store and free). I was then sent by my interviewer, a link to click on at the scheduled time. This opened up our video call, which we successfully concluded over an hour or so.
I was due a visit by Molly Sandhu & Rachel Henry from NOTS this Monday afternoon. Whilst this was ahead of the nationwide lockdown announced later that evening, I felt it unwise the girls visiting and suggested a Zoom videocall as an alternative. Rachel downloaded Zoom and, when I knew her new user number, I called her from my iPad and we had a very successful videocall, covering all the points needed.
I had a further meeting scheduled On Wednesday with Kathryn Webster from NES, however she preferred to complete our meeting via audio telephone call. Not quite as good as via Zoom, but still highly successful. Kathryn did say NES would be looking at the use of Zoom for future meetings.
The BBC has recently covered the use of Zoom and highlighted it’s very wide use and acceptance. If the PM and business leaders are chatting about items of national importance, I’m sure it is perfectly fine for discussions on my (or indeed others) drooling!
Unfortunately the branch has no facilities to store, check or refurbish equipment but we are happy to advertise any items that people want to pass on when they are no longer useful.
We would always encourage you to contact your occupational therapist to check the suitability of specialist equipment for an individual.
Contact Ann Quinn to advertise
Phone: 07776 191333
Chris Naylor will have contacts details only.
Phone: 0114 2653774
August 2019: Battery Power Pack to assist in pushing a manual wheelchair. Free to family affected by MND. Contact firstname.lastname@example.org
The peak District National Park Access Officer is Sue Smith. She recently launched a book of official routes for ramblers with mobility problems 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 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 definitely 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 totally 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 which also has disabled access caravans.
Don’t Give Up. This is Emma's account of booking a major concert.
My name is Emma and I have Bulbar Onset Motor Neurone Disease. I was diagnosed 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 having 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
And thank you Emma for writing about your experience.