I left school at 16, I had no qualifications, but I worked hard and found my love for sales, operations and technology. My job enabled me to travel and provide for my family – that’s what you go to work for right?
In May 2020, I’d planned to retire, like most people I had been working my entire career so I could start to travel and spend more time with my family. We were planning to celebrate my retirement and my wife, Sonia’s 60th birthday with a three-week trip to Canada. Our plan was to explore the western side of the maple leaf country – Banff and Jasper, the Rocky mountaineer train, a cruise to Alaska and a few nights in New York on our way home. What a way to celebrate. Or so we thought.
I’m David and my story starts with the familiar tale of Covid taking over the world and changing life as we knew it. My plan for retirement went out the window as the country went into lockdown and I continued to work. I postponed my retirement (and our trip) and I was kept busy throughout with working from home, we planned to take our trip when everything lifted.
I noticed something was wrong
In August 2021, we were out with our grandchildren when I noticed some fluttering in my shoulders, a strange feeling but thought nothing of it. In December 2021, I noticed I was losing movement in my hands – I took the grandchildren bowling but couldn’t get my fingers in the holes of the ball and my wrists were weak. Again, a strange feeling. Around the same time, Sonia and I were watching The Split on the BBC. There was a storyline about a doctor who had been diagnosed with MND, she had similar symptoms to mine and it got me thinking. I started to research the condition and my concerns grew. It played on my mind for some time before I did anything. Sonia and I had gone away for the weekend, and when I really struggled to lift my beer I knew, now I needed to do something.
By this time, I had resigned and announced my retirement. I was working my three-month notice period when I first went to my GP about my growing concerns and symptoms. Sadly, following the pandemic, waiting times were long. To see a consultant would have taken 10 months, so I made the decision to see a private specialist. I was seen quickly and during my first meeting we discussed my symptoms, ran several tests, which included a brain and back scan. The results took one week which flew by. By the end of that week, I’d finally reached my retirement date; Friday 20 May 2022. On Saturday 21 May 2022 I was diagnosed with Motor Neurone Disease (MND). I’d like to say I was in shock; this is not how I planned to celebrate my retirement, but I already knew. All my online research had led me to this diagnosis and now it was confirmed.
Looking forward to our holiday
Five days later we finally went on our trip to Canada – a hard decision. We had waited so long for our holiday and to celebrate Sonia’s birthday. We talked about not going following my news everything was so up in the air; and we were both emotional, but I couldn’t imagine not going. A friend we were meeting on the cruise came round to the house and said “I don’t want you to ever regret not going! We’ll meet you as planned, and we’ll have a great time.” And so, we went ahead. The first day we arrived, we were both down and upset about what the future held for us but we quickly agreed that we didn’t want to spend our three-week break away being sad. We made a plan – our 10-minute rule. From that day we allowed ourselves 10 minutes everyday to talk about my diagnosis, this was our time to cry and feel sad. Once those 10 minutes were up, we’d look forward and get on with our day (as much as we could). Our 10-minute rule has got us through some very tough times, and we know we have more to come. But we’re in control and we have each other. I won’t let MND take over my every thought.
Our holiday was amazing, we spent three weeks together making memories that will last us a lifetime. Special moments for the two of us.
Being referred to Keech
These days, I can’t do much. Quite quickly, following my diagnosis my mobility became limited. I have very little strength in my arms and hands and lifting anything for long periods of time is impossible. Very simple movement is hard work for me and I’ve been surprised how quickly my body has changed.
My sister-in-law introduced me to Keech Hospice Care and now I have Donna.
Donna is the Occupational Therapist at Keech who is supporting me with the changes I’m experiencing. She has arranged for me to have a Neater Eater. Sonia and I had mentioned that eating was becoming difficult so Donna did some research and found me this aid. It means I can still feed myself, something I want to do, I should be able to do and means Sonia doesn’t have to. That’s important to me and will make such a difference to our everyday. Donna is so valuable to us on this journey, I never realised that hospices’ offer such a vast range of care services, and I don’t know what I would have done without her and the team.
I have found the hydrotherapy pool to be a great way to relax my body – the heat of pool gives me great comfort. Under the supportive care of Charlotte, my Aquatics Therapist, I have been able to perform exercises in the water that have helped my strength. Another favourite is the circuits with Nic, the Rehabilitation Assistant. She makes the exercises so much fun and is such a laugh. She has us all working hard in gym and even makes it competitive. I know we’re safe in her hands. The whole team really engage, understand and care about me. And Sonia too. They are doing the very best they can do for me, for as long as they can. The struggle I have is finding the time to attend all the groups and services at Keech. There is so much on offer, and it really has made the difference to my every day.
Support for Sonia
Sonia is seeing me fade away, it’s very difficult for her. She really does have to do everything for me. She’s my partner in life and I’m so thankful for her and our relationship. She is having counselling and complimentary therapy – it helps her to relax, share how she is feeling and supports her mental wellbeing. You can talk to friends but sometimes I know I want to hold back to not burden them. Having someone you can talk to, completely openly about how you’re feeling is so incredibly valuable. Keech are engaged with Sonia as much as me and I’m delighted that she is supported. It takes away the burden, just a little, because I know she has people she can talk to. That’s incredibly important to me.
We’ve been married 43 years and I feel guilty I have MND and the impact it has on Sonia, but it’s made us stronger. We’re close, we talk about what’s happening and how we are feeling and that has helped us so far. I can’t do anything about it, and she can’t either. With Keech by our side we feel supported and as we plan for what might happen next, we know they will be there with us.
We’re taking each day as it comes, MND doesn’t follow a pathway. Every person and their experience is different and that’s why I feel the care and support I get from Keech is personalised to my needs. They treat me like me, I’m not just a patient.
If you’re reading this, know that Keech Hospice Care is here for you. If you or someone you know has a life-limiting condition they will support you and your loved ones from day one. Do what you can to support yourself and lean into what is happening to you. Don’t be afraid. We’ve discovered that Keech is about so much more than dealing with death. They are dealing with life. They support people in living as they are now with a life-limiting condition, and in helping people prepare for what will happen next.
Keech is a place of joy, care and love. The team have so much to offer. Death is the very final part, Keech is helping me live well for as long as I have left.
Legal notice © 2023 Keech Hospice Care, Great Bramingham Lane, Streatley, Luton, LU3 3NT. Registered Charity Number 1035089. A company limited by a guarantee. Registered company in England and Wales (no. 02904446).