Alan, Me and MND, Part 1: diagnosis

Alan was born in Sunderland and I was born in North Devon – miles apart from each other. A lot of people would describe him as a gentleman: he was a humble, but very clever man. He was a man of few words, but when he did speak it was very impactful.

He was a qualified, chartered surveyor and ran his own business when I met him.

He was athletic, he loved running, cycling and skiing. He also took up golf so that we could play together. 

He was handsome too – everyone was very envious of his good looks!

When Alan and I met we were already mature, had been divorced and neither of us had children. We had two incomes and the opportunity to have a fantastic life together – and that’s exactly what we did. 

We worked hard, but also made sure we had bucket loads of holidays and travelled a lot. We were leading the best life and were literally ecstatically happy.

Before his illness, life couldn't have been better.

We were on holiday in Turkey in September 2017. We’d played a bit of golf and were relaxing around the pool when Alan said to me, “I've got a problem with my right arm… it's not working the way it should.” That was it. The only symptom. 

It had been bothering him apparently since May, so I told him he should see the GP, which he did when we got home. The GP said it could be a number of things and suggested some specialist tests. 

21st November 2017 is a date I'll never forget. That was the day we were told Alan had six months to two years to live, Everything went upside down. It felt like a car crash. It was a huge, huge blow.

Alan was diagnosed with motor neurone disease, the same condition rugby player Rob Burrows has. Professor Stephen Hawking had it, so did Doddy Weir, David Niven and Ronnie Corbett. 

And we didn't know that much about it.

We'd never talked about end of life planning because we were young. He was only 62. There was no need to talk about it at that age – we didn’t think so, anyway. 

Alan wanted to stop work straight away. But I felt the need to have something to keep me grounded. I spoke to my company and told them I wanted to hand my notice in at some point. They understood and initially they gave me a month’s leave. Every time I tried to resign, they kept trying to get me to stay… but before long I left anyway. 

At first, Alan only had a weak right arm. But eventually his other arm, and legs, became weak as well. Over the course of 18 months, he became totally paralysed.

As the disease was progressing, we still managed to continue a great social life. We went on holiday to Vietnam with the help of a wheelchair.

But holidays abroad had their challenges, so we decided not to do any more. Instead, we explored Wales, Scotland, and Yorkshire.

Of course, Alan had to give up sports, which was difficult for him. Over time, he had to give up everything. Within six months, he was in a wheelchair. 

It was a rapid, rapid progression. 

Initially I became Alan’s carer, but as things progressed it got more difficult for me to look after him alone.

Four times a day we had professional carers, and my role shifted to being more of a nurse. He was on a non-invasive ventilator, which is technical equipment that needs looking after and regular adjustments to the face mask. I dispensed medicines for him. Eventually he couldn’t swallow so had to take food and medicine via a tube in his tummy. 

He was a proud man, so it used to take two hours every morning to help him with his entire routine. During that time he would be showered, shaved, hair washed, teeth cleaned etc, even though he was going to end up sitting in a wheelchair.

MND is a neurological condition. Gradually he went downhill physically, but also there were mental and psychological challenges.

We knew that we didn't want sympathy. We didn't want to be treated any differently. It was heartbreaking having to tell all our friends and families about the diagnosis and prognosis. They were incredibly supportive and we felt very lucky. 

The MND Association provided us with information and local meeting groups. We were lucky that we had a neurologist and an MND nurse assigned to us from our local hospital. 

Also the local Marie Curie hospice supported us from the beginning. Their involvement was invaluable. They provided a physiotherapist, occupational therapist, complementary therapists, and a social worker to support us.

Just after his diagnosis, Alan was asking, ‘Why me? Why did I get this?’ 

But we quickly decided that there was no point in asking those kinds of questions because, in most cases, there are no answers why people get MND. 

Also because Alan needed to start using a ventilator quite quickly, he missed out on a drug trial. That was a sad day because it meant there was no hope. It was just a question of making the best of a bad situation and giving Alan the best care possible until he passed away.

In the early days we both cried a lot. We both broke down into tears almost every time we ran into each other in the house. He would get very tearful and would often say, ‘this isn’t fair on you’.

The hospice suggested we should meet the bereavement counsellor. That didn't make much sense to me at first because I thought, ‘we're not bereaved!’

But when I had my first session it became clear to me when the counsellor used the words ‘anticipatory grief.” I'd never heard of it before, but soon realised I was experiencing it. Alan and I had several joint sessions with the counsellor at the hospice too.

Our house became a hospital, and our privacy became invaded. But that was necessary to provide the right kind of support and care for someone with MND.

Our lives revolved around care at home, and support and clinical meetings at the hospice, plus as much social activity as we could manage. There were lots of people coming and going, both professionally, and friends and family. 

From the beginning of our journey, I kept a journal. That was a coping mechanism for me, In addition to the activities of the day, I also captured special things Alan said. I wrote them down every night and eventually turned all my notes into a book, called Life's Good, it’s the disease that’s the problem, to help anyone caring for someone who's got a terminal disease. 

From the beginning of his diagnosis, Alan said he wanted to die at home. When we got the chance to talk to palliative consultants, we worked on a respect form, and managed to get the will and lasting power of attorney done while he was still able to write.

We didn't talk at that stage about things like funeral planning or where he wanted his ashes. We didn't even talk about the idea of respite care, although we knew it was available. 

It was all going to be about us making the best of a bad situation, living at home for as long as possible, and hopefully Alan dying peacefully at home. That’s what he wanted. 

But it didn't work out that way.