MND is a cruel disease but nothing can prepare you for making friends and losing them. There’s so many of us across the UK who are connected by this disease. We support each other and you begin to feel part of a community of people going through the same things as you. You start to build friendships and even although you are fighting the same illness, you hope that they won’t pass away before you. You momentarily forget that you are terminal and they are too. You hope for a breakthrough and that you will both be there to see it.
I first saw Alan on the news in 2019 and noticed his super cool Segway wheelchair. I was struggling with walking but also struggling mentally with the idea of being reliant on a wheelchair in the future. He was zipping around with ease and I just thought – I want one of those!
I read his story on the MND Scotland website, then I reached out to him on Facebook and we got chatting and became good friends. We both had a positive outlook and we are keen to find solutions to overcome everyday problems.
That’s what I loved about Alan. He was always thinking outside the box, coming up with ingenious ways to make tasks that were becoming difficult easier. Nothing was impossible.
Neither of us liked the look of some of the disability aids available. We wanted things that looked ‘normal’ and not like they belong in the hospital or nursing home. We went virtual shopping for profiling beds together online. Sending each other links back and forth to try and find the best deal. He was questioning whether spending so much money on a bed was justified, but I managed to convince him that it would be a good investment. Good quality sleep is really important after all! We joked that his wife probably thought I was a bad influence!
The Segway wheelchair was incredibly expensive. He kindly invited me through to his house to try one out to make sure it was suitable for me first. Then he helped me to get a second hand Segway just like his. It was so much fun and gave me so much freedom. It took some getting used to, but he was always available with some tips and once I mastered it we were soon racing each other. I won ofcourse…. But I think he let me win.
I don’t believe I could have adjusted so well mentally, if I had gone straight to using a powered wheelchair. I don’t think I would have gone near the powered wheelchair and it would have sat untouched for weeks, maybe longer. The Segway wheelchair was exactly what I needed at the time and Alan understood that.
When Alans own Segway wheelchair was no longer suitable for him anymore he was determined to find a young person with a disability to gift it to them. I think it gave him great pleasure to see it changing someone’s life. I found his gesture really touching and I was so pleased that he had found a suitable match for the chair. It made me emotional to see how happy the gift had made someone else. I know it meant a lot to Alan.
We met up for dinners and ‘walks’ with Alan and his family. He has such a lovely wife and family. He had had MND for longer than me so he was always on hand with some advice. We would find that he had already been presented with and overcome an issue that I was being presented with. As my MND progressed more quickly and was affecting me differently, I was able to offer some advice too.
He would always listen to the latest crazy drama that I was having with different medical professionals. He would share my disbelief in how ridiculous the situation was and he was always very supportive. I wish I could tell him about the latest saga with my feeding tube and see what he would have to say.
I wish I could share with him the latest gadget that I got for my 32nd birthday to keep my legs and feet warm. I’m sure that he would probably want one too!
The last time I saw Alan, he was in a wheelchair with no breathing issues and he was still able to feed himself etc. I always thought he would outlive me. He always looked in good health despite MND. That’s why it’s so hard to believe that he is gone.
I know he didn’t want to be here if he was struggling to communicate etc. He didn’t want to be here if his quality of life was poor. I understand that his symptoms had changed a lot in the time that I hadn’t seen him.
I’m angry that this has happened to him. I’m angry that a lovely family has lost a husband, a father, a brother. I’m angry that this is happening to other families. I’m angry that it’s happening to me and my family too and there’s nothing I can do about it.
I’m disappointed that he wasn’t here to see the government do a complete u-turn and awarding the £50million over 5 years for MND research. He was a patient advocate for the MND Smart Trial. I know this news would have given him hope.
See Alan discuss the trial here https://www.bbc.co.uk/news/av/health-51122188
I didn’t know Alan before his MND. I was Alan’s friend for such a short window in his life and I don’t think this post does him justice with what a lovely, kind and generous man he was. I feel honoured to have known him and grateful that we were the support network we both needed on this journey. I hope he knew what a positive influence he was and how much his friendship meant to me.
Jo’s Journey with MND 