Useful Information

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; mndvisitor@gmail.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. 

Hi All,

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!

Best wishes.

Martin

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262