Battling Setbacks and Celebrating Rugby: A Month of Challenges and Hope
Ed SlaterShare
I am not looking forward to winter. Like most people, I don’t enjoy the dark mornings or the early onset of night. I’m also very vulnerable to illness in my condition, which I hadn’t really thought about this time last year. With shallower breathing and reduced movement, I’m an easy target for viruses. I realised this a few weeks ago when I noticed swelling in my elbow. As usual, I ignored it, hoping it would clear up, but when you have little to no movement in your arms like I do, that isn’t a wise approach.
After a week, the skin on my arm had turned red, with the infection spreading up and down. At that point, I finally mentioned it and started a course of antibiotics. Great, I thought, that would do the trick. A week later, the arm was better, but I was still wiped out, feeling utterly exhausted. The infection had really taken it out of me. My breathing was difficult, I had headaches, and I kept waking up feeling groggy, with no energy to do anything. Eventually, my brilliant palliative care doctor came to see me and sent me to the hospital, where they discovered a pulmonary embolism. Thankfully, no serious damage was done, although in my situation, the damage is somewhat already there!
My symptoms have changed a lot over the past year, and I am now at a point where I have to consider interventions like a BiPAP machine, which is a form of non-invasive ventilation. My diaphragm is weakening, meaning I can’t take in as much air. This machine helps by using pressure through a mask to deliver more air into my lungs. One day, I’ll need to use it around the clock, but for now, I’m getting used to it and using it to boost my energy levels, especially when I’m ill again.
Another intervention I’m considering is a PEG (Percutaneous Endoscopic Gastrostomy), which is a small tube that runs directly into the stomach. It allows food, liquids, and medicines to be delivered directly into the stomach. People with MND often use a PEG because as the muscles that help us swallow weaken, and the tongue loses strength, we become vulnerable to choking. Without a PEG, it’s difficult to take in enough calories and hydration, which can make life even more challenging. Of course, it’s a personal choice, but for me, it feels like a mental tug of war. Do I really want to have something external that prolongs the disease, or should I opt for it to make life easier for myself and my family? Why wouldn’t I want to stick around to see my kids grow up for as long as possible?
As you can see, there’s a lot for people with MND to consider that often goes unseen. I take a pragmatic approach: weigh everything up, make a decision, and then focus on the things I enjoy.
On a more positive note, I was proud to see the 745 Cross Code Rugby game launched recently. I wasn’t sure if it would remain just an idea between Rob and me, but thanks to so much help from Leeds Rhinos, Gloucester, and our own 4Ed superhero Lydia Atkinson, it’s now happening. After Rob passed away, his wonderful wife Lindsey got in touch, saying we had to keep going and that Rob had wanted this to happen. Lindsey has been brilliant in gathering Rob’s team while I worked on mine. Phil and Sian at Leeds Rhinos helped with hosting the event at Headingley—the only venue where it could have started. Rachel at My Name’5 Doddie has also been instrumental in bringing everyone together, and Lydia has been the driving force behind it all. It’s been a real team effort, but, of course, it’s nothing without the rugby community getting behind us on 17th November.
I started approaching players in March, alongside Rob, who had drawn up his own list. I’m part of the Sabretooth Tigers, a group for former Leicester Tigers, so I sent out a message and received a fantastic response. Old friends and teammates like Geordan Murphy and Tom Youngs will be involved, along with my former Gloucester teammate Danny Cipriani. We have lots more exciting players, but I don’t want to spoil the surprise just yet! We’d love to fill Headingley and give everyone a great day of rugby, atmosphere, and a few beers, as we bring two codes together to remember the great Doddie Weir and Rob Burrow.
Thanks for reading, and I’ll be back next time to share the story behind swapping Sydney for Leicester and meeting Richard Cockerill for the first time! Comment below—I’ll be reading.
After a week, the skin on my arm had turned red, with the infection spreading up and down. At that point, I finally mentioned it and started a course of antibiotics. Great, I thought, that would do the trick. A week later, the arm was better, but I was still wiped out, feeling utterly exhausted. The infection had really taken it out of me. My breathing was difficult, I had headaches, and I kept waking up feeling groggy, with no energy to do anything. Eventually, my brilliant palliative care doctor came to see me and sent me to the hospital, where they discovered a pulmonary embolism. Thankfully, no serious damage was done, although in my situation, the damage is somewhat already there!
My symptoms have changed a lot over the past year, and I am now at a point where I have to consider interventions like a BiPAP machine, which is a form of non-invasive ventilation. My diaphragm is weakening, meaning I can’t take in as much air. This machine helps by using pressure through a mask to deliver more air into my lungs. One day, I’ll need to use it around the clock, but for now, I’m getting used to it and using it to boost my energy levels, especially when I’m ill again.
Another intervention I’m considering is a PEG (Percutaneous Endoscopic Gastrostomy), which is a small tube that runs directly into the stomach. It allows food, liquids, and medicines to be delivered directly into the stomach. People with MND often use a PEG because as the muscles that help us swallow weaken, and the tongue loses strength, we become vulnerable to choking. Without a PEG, it’s difficult to take in enough calories and hydration, which can make life even more challenging. Of course, it’s a personal choice, but for me, it feels like a mental tug of war. Do I really want to have something external that prolongs the disease, or should I opt for it to make life easier for myself and my family? Why wouldn’t I want to stick around to see my kids grow up for as long as possible?
As you can see, there’s a lot for people with MND to consider that often goes unseen. I take a pragmatic approach: weigh everything up, make a decision, and then focus on the things I enjoy.
On a more positive note, I was proud to see the 745 Cross Code Rugby game launched recently. I wasn’t sure if it would remain just an idea between Rob and me, but thanks to so much help from Leeds Rhinos, Gloucester, and our own 4Ed superhero Lydia Atkinson, it’s now happening. After Rob passed away, his wonderful wife Lindsey got in touch, saying we had to keep going and that Rob had wanted this to happen. Lindsey has been brilliant in gathering Rob’s team while I worked on mine. Phil and Sian at Leeds Rhinos helped with hosting the event at Headingley—the only venue where it could have started. Rachel at My Name’5 Doddie has also been instrumental in bringing everyone together, and Lydia has been the driving force behind it all. It’s been a real team effort, but, of course, it’s nothing without the rugby community getting behind us on 17th November.
I started approaching players in March, alongside Rob, who had drawn up his own list. I’m part of the Sabretooth Tigers, a group for former Leicester Tigers, so I sent out a message and received a fantastic response. Old friends and teammates like Geordan Murphy and Tom Youngs will be involved, along with my former Gloucester teammate Danny Cipriani. We have lots more exciting players, but I don’t want to spoil the surprise just yet! We’d love to fill Headingley and give everyone a great day of rugby, atmosphere, and a few beers, as we bring two codes together to remember the great Doddie Weir and Rob Burrow.
Thanks for reading, and I’ll be back next time to share the story behind swapping Sydney for Leicester and meeting Richard Cockerill for the first time! Comment below—I’ll be reading.
15 comments
So many decisions to make Ed – Keep going!
I chatted with you in Pittville Park a few weeks ago and it was great to hear your spirit and determination and also to share our thoughts on Gloucester. I came away from that conversation feeling reassured that you are doing well in the most challenging of times. I hope you feel that too.
At least Gloucester are doing their best to entertain us and it’s more fun than last season was!
Love and best wishes to you and your family
Sarah
Was amazing seeing you watch Frank & the boys a couple of weekends a go & what a goal from Frank! At training yesterday he was banging them in & I said ‘Frank…..what’s going on with your shot recently….coming of that boot like a rocket’.
He had a big smile & said ‘been practicing in the garden with Dad!’.
Nice work Ed!
Everyday is precious.
Can’t thank you enough for the blog. I really get a lot out of it personally and totally inspired by you how you have approached this horrendous illness. Positive love to you and your family x
Glad your doctor caught the PE early Ed and great to hear that you’re settling with NIV. I’ve been using it for 3 years now and it helps a great deal. I look forward to reading your next update.