Marianne and Peter

Before Peter was diagnosed with MND we had a free and easy lifestyle. We were both retired and used to go on a few holidays a year, go out for lunch or dinner and visit London to see some shows.

On one of our holidays Peter kept falling sideways whilst sitting on the bed and we laughed it off as him having had one too many drinks.
However even doing up shoelaces became problematic as now Peter kept falling backwards. We visited the doctor who said they would investigate as they thought he had suffered a TIA. Peter had blood tests, Xrays etc but nothing could be found and it was written off as “one of those things”.

However I noticed that Peter began to walk different and could not pick his feet up as well and kept stumbling.

Back to the doctor who sent us to a neurologist. Peter had some tests done which involved sticking needles in various part of his body to measure the signals going through his nerves. This again was not conclusive.

We just soldiered on but noticed that things were not as they used to be. Peter could not walk any distance, where before he was a very fit person.

Doctor could not work out what, if anything, was wrong, blood tests showed nothing either. However Peter slowly deteriorated and began to struggle holding a knife and fork for instance.

We were finally referred to Basildon hospital to see a specialist, who, after tests, concluded that Peter had motor neurone disease, but a mild case and therefore it had taken such a long time to get a diagnosis.

It was quite a shock, especially as we were told that there is no cure and you just have to learn to live with it.

The official diagnosis was 7 years ago now and Peter has slowly deteriorated. At one stage he could still come out of the house using a walking frame and getting into the car. Then came a stage where he could no longer get into the car and he kept falling over. When I had been shopping and came home, I would often find Peter on the floor or in an awkward place in the bathroom. There have even been instances where I had to go out at 11 pm at night and stop someone in the street to ask to help me get Peter off the floor, as there was just nobody available. Fortunately my neighbours were very obliging and helped out at numerous occasions.

Now we are at the point where Peter no longer has core strength and needs to be hoisted with an electric hoist from bed to chair and vice versa. He now needs 2 carers morning and night to help with dressing, washing etc as I can no longer do it on my own. The diagnosis has had a profound impact on our lives. Our families found it difficult to accept too. When I mentioned it to friends it was often brushed off, as one of those things and you have to live with it, but nobody understands the implications and the restricted life you live unless you are involved with it.

I have struggled myself with depression and anxiety because of the worry and to make sure that Peter can have the best life possible.

Fortunately there is help at hand and Challenging MND association has been an enormous comfort and help. They have provided grants to make life easier and have helped also with paid carers so I could go out for a whole day occasionally in order to refresh my own mental health.

I arrange for Peter to have visitors occasionally so he can keep in touch with the outside world and family come and visit, however I have noticed with friends they find it difficult sometimes to know what to talk about, almost as if they are afraid of the illness itself. It can strike anyone and Peter has been given a trial tablet called Riluzole. It might slow the illness down but cannot cure it.

Peter and I have been closely following the work being done and the extra ordinary pursuits undertaken by Alex, founder of Challenging MND. It gives hope to others suffering too. It has been more in the news off late due to several rugby players being on tv, but I feel more needs to be done centrally to try and find a cure for this awful and debilitating disease.

It hurts me profoundly to see my once fit and healthy husband reduced to a person who can now hardly eat or talk and has to spend his days sitting in a chair unable to do much.