Experiences of Living with MND
There are no tests that in themselves diagnose MND. Essentially it is diagnosed by a process of elimination, where all other potential ailments can be ruled out, including some of the most bizarre and rare tropical diseases. While these tests are being processed, and as the patient goes through scans, blood tests and various forms of examination and despite the extensive exploration of potential causes, it is clear the diagnosis homes in on MND quite early on. I know that Sue understood what was wrong with her very early in this process. In the end, it was on the day after her birthday that the consultant neurologist confirmed that she did in fact have motor neurone disease.
To begin with Sue just appeared to be very slightly clumsy, tripping easily when we were walking or when getting up from her chair. We suspected a sprained ankle due to a trip walking the coast path in Cornwall. In fact, it is one of the first signs as her toe dropped very slightly while walking so not quite clearing trip hazards such as roots and rocks in the path.
Her legs were affected first making it increasingly difficult to walk and to climb stairs. I recall placing her one foot in front of the other, lifting them one at a time as we walked her upstairs to bed. Gradually she needed more support, firstly with a splint to help raise her foot and then later using a walking stick and then crutches. She continued to battle on making her way to work in Cambridge on the train, and working with a lovely company where she had to climb stairs to get to her office. She even had to climb down those stairs to use the toilet.
Eventually Sue could not manage any longer and had to give up her job. She had already given up her beloved car ‘Duffy’, a Nissan Figaro which she had loved so much. The first of many profound losses.
At the time we lived in an old house which had a step into and out of every room and eventually we had to move into the annex we had built which was all on one level. Ultimately we had to leave this beautiful house we both loved so much and move to a functional bungalow which could be better adapted to her needs.
I had often felt that MND represented the cruellest way to take someone’s life. Gradually taking away from them their mobility and ability to do anything for themselves. It is this progression of the disease that makes for the biggest challenge in caring for someone with MND.
Having quit my job to look after Sue, I had to come to terms with her needs, which were always changing. Sometimes you would feel that the progression of the disease was very sudden, but in practice the patient gradually loses an ability to do something, trying very hard to hang on to that activity, until eventually they simply must accept they can do it no longer.
It is this changing nature of the disability that provides the biggest challenge in caring for someone with MND. As soon as you have provided for their current level of disability the disease moves on and the patient’s needs change yet again. You seem to be chasing your tail all the time, trying hard to hang on to their independence and their ability to do things, providing whatever facilities possible to support them and then you have to look for the next disability aid.
In Sue’s case she lost the use of her legs first, and we hung on to the hope for a while that that may prove to be the extent of it for her, but eventually she lost the use of her hands and arms. As the disease progresses further she lost the ability to hold her body up, just falling over if she was left sitting up unsupported. Eventually she lost all control of her voluntary motor functions and then the disease started to affect her autonomic functions, especially her breathing.
One of the biggest challenges was to keep Sue feeling comfortable. It was so critical to get her into a position where she was supported correctly to be comfortable and as she was unable to move herself I had to spend a lot of time moving her about, often by very small degrees, to get her comfortable.
It meant that the wheelchair, or the armchair she was sitting in had to be just right and lots of careful adjustment was required to get her comfortable. Also, she needed a bed which could raise her legs and her head to just the right levels, which in turn meant she could not sleep in a normal bed. It also meant that only a full-body sling was comfortable and a toileting sling was never going to work. This made toileting that much more complicated once she had to be hoisted.
The process of caring for Sue gave me many insights into the challenges of dealing with such profound disability. Unlike other forms of disability which are permanent and unchanging, one has to anticipate the next challenge constantly. Understanding these challenges and preparing for them would be very beneficial. Here are a few specific observations.
Quite early on you will need a wheelchair and the choice is very important as it makes a huge difference to the patient’s mobility. Early on Sue had a very compact and mobile wheelchair, easy for her to operate herself and leaving her feeling much less conscious of the wheelchair itself. It was very light and manoeuvrable, but very expensive, and unfortunately not practical for very long as she started to lose the use of her arms making it impossible for her to move herself. It was not very practical outside either as it had small wheels and struggled, especially with the old, broken pavements of Cambridge, not to mention the cobbled streets.
We also had a larger wheelchair that came as companion to a stair-climber, which we used extensively, especially in our holiday home in Cornwall, due to its many stairs and steps. In theory, this was brilliant as it enabled us to get up and down stairs, but it was difficult to use and at times very hazardous and unstable. I was always amazed I didn’t drop Sue out of it at some stage. It also took up a lot of space and was therefore difficult to use on narrow, winding stairs. Although it was very expensive, it did allow us, despite the challenges of it, to continue to use our house for a while which would have otherwise been impossible. In the end, we had to stop using it as Sue lost the ability to support her upper body and would be at serious risk of falling off the seat.
On one occasion the wheelchair services provided an electric wheelchair, which was completely wrong for Sue. By this time her condition had advanced such that she did not have sufficient use of her hands to control the chair, it was nothing like adjustable enough to enable her to be comfortable and it was extremely heavy, so difficult to get in the car and impossible to get up steps.
Ultimately, Sue needed a wheelchair that provided complete support to her; legs, arms, head, body and she needed one that was highly adjustable and comfortable and could be reclined in space. Such wheelchairs exist and they proved to be very successful, but they are expensive and one at least we tried, was so wide it would not fit through our doors.
Choosing the right wheelchair is crucial and my advice would be to go for the very supportive one as soon as possible. You will eventually need it and it is expensive, but so much more practical for the patient and carer. Any interim solution is only temporary. Get wheelchair services to supply one. An example of the kind of chair you will need, although not necessarily the one I would recommend, is here.
To begin with, Sue could transfer to a normal car seat from her wheelchair by means of the sliding board. It did mean though that the car seat and wheelchair seat had to be roughly the same height, which was not the case with our Volvo XC90, which had to go to make way for a Ford Mondeo. Later as transfers became that much more difficult, we had to get a car which we could put the wheelchair into, usually through the rear hatch. This works quite well in principle, but the issue here was the need for the larger wheelchair which needed so much more room than the smaller one.
The advice here is go for the car with the rear entry via ramps and choose one that has plenty of room for the larger wheelchair, especially front to back in case the patient needs to be reclined. We started with a Ford Galaxy, but there was only room for the smaller wheelchair. We then traded that for a Kia Sedona, which had plenty of space for the larger wheelchair. The supplier was great, doing a fair trade in for the Galaxy against the Kia, but when my wife had died and I tried to sell it back to them they suddenly didn’t need them anymore and I was forced to take a huge loss, despite having had the car only 2 months.
Getting the right vehicle is so important to retaining at least a degree of mobility. Rear entry is good also as you do not need the added space at the side of a disabled parking bay. You can park it in any space. The patient sometimes needs supporting, otherwise when you go over bumps they can just flop out of their chair, but with the more supportive chair, that is less of an issue.
The Disabled Toilet
I feel I could probably give a total treatise on this subject alone, having experienced every conceivable challenge the public toilet could represent. Severely disabled people’s lives revolve around toileting, and so it is often difficult and indeed distressing if the experience is particularly unpleasant.
There is a standard for the layout and provisioning of a disabled toilet (known as Doc M) and the equipment required is generally not too expensive. It shows where to place the toilet, the type of toilet to choose, where to put the supporting bars, the wash basin, hand drier, etc and if it is followed, the facility can be very usable. So, there is no excuse when disabled toilets are inadequate. In fact, one is tempted to suggest that for any organisation to advertise that it has disabled toilets, it should pass some form of certification to that effect.
- Toilet too low. A conventional, low-level WC is some way lower than the wheelchair, so if you are using a sliding board to get onto it you slide downhill easily to get on, but have to slide uphill to get off, and that is often very difficult. Many’s a time I have contemplated getting a friend to help me slide Sue off the toilet.
- Toilet too far from the walls. If the toilet is too far away the patient cannot reach the bars on the wall. Generally, they need to be able to rest their arm on the bar to steady themselves, but if they cannot reach it the bar is useless.
- The bar too far from the wall. The patient will lean on the bar and if the gap between the bar and the wall is too large it is easy for their arm to slip down between the bar and the wall, which can be painful and indeed difficult to extricate them from.
- Toilets with conventional seats. Because sliding on to the seat puts significant lateral strain on the seat, a conventional toilet seat, which is not very strong, especially side to side, just breaks.
- Toilets too small or cluttered with nappy changing bins, making it impossible to get the wheelchair anywhere near the toilet.
- The hand drier on the opposite wall to the wash basin meaning having washed their hands the wheelchair users has to turn their wheelchair around with wet hands.
- The toilets are invariably inadequate, too few, often shared with baby changing and as users take a long time to use them there can be a long wait.
- The most distressing aspect though is how disgustingly filthy they invariably are. They seem to get little or no attention and so many times I have had to ask my poor long-suffering wife to use facilities which were shamefully awful for her.
Why do people think they need to park their cars half on the pavement? When they do you cannot get by with a wheelchair (or a buggy) and you are forced to take your passenger out into the road. Similarly, if people place signs or bicycles on the pavement it is hard to get by. A little thought would certainly help.
Of course, blue badges are an important device for managing the availability of appropriate parking spaces for use by the disabled. However, a lot of people now qualify for them and it is often the case that there are insufficient spaces available. If you have someone who is profoundly disabled your need for a space is that much more significant. Addenbrookes Hospital for example has a number of spaces outside the entrance, but they are always full, forcing you to go into the main car park, which has too few disabled spaces. Should we perhaps have a system that differentiates between those with minor handicaps and those with profound mobility problems? Not to mention of course those that abuse the system.
Once my wife was diagnosed privately we were advised to revert to the NHS for treatment and support. They are so much more experienced with such complex conditions as MND. On the whole we received outstanding service from the NHS and I would particularly point out our local GP, Kate Ferrier, who was magnificent and very professional, and Papworth hospital which looked after my wife with great care.
Generally, Addenbrookes was fine, but on one occasion we had cause to complain as my wife was admitted for a simple procedure in a day care ward where most patients are there for minor cases and need little or no nursing care. The problem was simply that they were not prepared for caring for and supporting someone totally disabled and in need of significant care and support.
I would add that essentially everyone else from the NHS performed very professionally and helped us a great deal. Our carers were excellent going that extra mile throughout in caring for Sue.
The whole process eventually cost a very significant amount. Some things are provided for you but as you try to improve the patient’s condition and comfort, you end up purchasing every gadget conceivable; chairs, vehicles, beds, stair climbers, etc, and having rooms such as bathrooms converted, not to mention having to move house and these are all expensive. However, a great deal is provided for you and we regularly had a visit from Nottingham Rehabilitation Supplies, who provided most of the day to day mobility aids you need.
Towards the end Sue was given a computer-based remote control system. She used her head to operate a single button to access the telephone, to control the TV and of course, to trigger a pager, which I got very used to in the end! This system did however transform her life at that time as she was able to do many things she had not been able to do for herself for some time.
I was surprised that we were not able to contribute more to research into MND. It seemed a simple process to interview all sufferers and to get a detailed picture of their lives and to ask about anything that might possibly have some connection to a neurological condition. Although one readily accepts that the research population would necessarily be limited, I felt one could not rule out life-style issues, long term conditions, medication or hereditary signs, and such research could have helped to identify such links.