South Yorkshire Branch: 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 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 [email protected] 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:

We have two different perspectives below about living with, and coping with a diagnosis of MND. We are very grateful to people for sharing what their personal accounts. 

Living with MND and Still Loving Life.          
(“For all the weakening of my muscles and the consequent failings of my body, I am still me.”)

Martin Kelly was diagnosed with MND in April 2017. Understandably a great shock for everyone. He was 59, fit, healthy and looking forward to a long retirement doing interesting things. Seven years later he has reflected on his situation many times. He recorded his learnings on the free app Record Me Now. This app allows you to make a lasting video legacy for yourself, your family and loved ones. It uses prompts. 
Martin shared what he called “his ramblings” with us. “Maybe for the interest of some and hopefully the benefit of others with MND” he said. He’s also shared it with his Consultant for the benefit of medical students. We are very pleased to print his honest and courageous article.
The full four page account of Martin’s reflections can be found below, we’ve also printed some paragraph headings with subsequent quotes. 

Acceptance. “I have achieved my peace of mind by getting to the acceptance stage very quickly.”

Don’t acknowledge the occasions that you may be doing something for the last time.  “I think this has helped me come to terms with losses and not spend unnecessary time lamenting.”

Don’t look back. “My attempt (is) to always look forward. To celebrate what I am still able to do and enjoy -there is always much.”
Seek knowledge when you are ready but before you need it. “ I have concluded that the right time for me to have all the information is when I realise a change is coming and that I need to make the best decision I can to be ready for it.

The MND Association is a good source of information. “They have many useful fact sheets on various symptoms” The benefits helpline was very useful” The local MNDA contacts introduced us to others and the Association Visitor still comes to see us.

Get a good healthcare team around you and develop relationships with key people. “No doubt because of the expertise they have built up over the years, they have been an invaluable source of knowledge and support.”

Prepare for the inevitable changes. “do the things you can do whilst you are able”..  and the things that are important to you like travel with the family”  “it’s easy to bury your head in the sand..” “Our direct MND team guided us on issues like voice banking…My Enteral Dietician helped me understand when the right time might be to have a PEG feeding tube fitted”

As each step change happens, understand that it takes time to effectively adjust. “Expect that and don’t worry about getting it all right instantly”…”often through trial and error there is indeed a way”

MND gives you time to sort your life out.  “How much time varies from person to person of course”  This has allowed me the opportunity to prepare my family…”

Consider getting involved with MND research. “I have participated and given feedback on many UK and international MND research projects” All of this has helped me feel more connected with, and understand the big picture better.”

A positive mindset can conquer most things. “ If you believe that you can cope with something, you will cope with it. 

Martin's full article can be found here...

Phases of Coming to Terms with an MND Diagnosis

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 peer support 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:

• Disabled Holidays
• Disabled Living - Holidays

If anyone else would like to share their experiences of a holiday or break please contact us.