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
Sorry to read this Ed but it sounds like you are mentally strong still and fighting hard. James and I used to laugh about how we thought the Dr’s were on some sort of commission for PEG’s as he was constantly under pressure at every hospital appointment. As you can imagine he told them exactly what he thought!
I love reading these blogs, not only very entertaining but also very mind provoking. Ps Rhys has got awful, dreadful even chat!
Ed, the way you have dealt with this has been so inspirational. The way you are describing your journey must be such a source of comfort for others. I hope Headingly goes well.
Some incredible word Ed keep up the fight and what you are doing for the MND community is incredible. The cross codes game sounds epic with some proper legends there keep on the blood it’s hard to read but the way you are going about this is incredible. Keep it up fella.
Hi Ed, Your honesty is gut wrenching but so helpful for others with MND. I was a ventilation nurse and set people with MND up on their ventilators. I’d really encourage you to use it as it will help with strength, sleep, recovery and even eating. Keep fighting.