So we're into June now. Prompted by pb's comment on the last blog, I thought I should update my injury history. It is surprising how much you forget and then realise later you've been covering the same ground. I just recently started doing a tiny little bit of running - 90s runs with 4 minutes recoveries, because although my legs feel stronger and I can squat and do all kinds of stuff, still when I run my knees and the tendons around my knees hurt. Unless that changes there's not much point in trying to push the running. I'm not even trying to increase it. AI, reassuringly, says this is a thing. Give it 4-6 weeks to let your tendons and ligaments tighten and your meniscus thicken or whatever. We'll see.
But the minute I start to write about the last 2 months, all that matters is that Peter's brother Neil died, so I'm going to write about that. I was always hoping maybe something might turn around - but it didn't. His breathing got really difficult because his diaphragm wasn't working well I guess. He couldn't clear enough carbon dioxide out of his system. He had a rare form of motor neurone disease called progressive bulbar palsy and it meant he progressively lost the use of his muscles for speech, swallowing and breathing.
He had had trouble with his speech for quite a while and had spent a while in hospital the year before last - at the time the thinking was he had myasthenia gravis which is not great but it's treatable and also it can remit.
Last year around April he had had the diagnosis of MND dumped on him. From what Neil and his wife Sue said they'd gone to an appointment, some consultant lady in high heels had come in, given him the diagnosis and spoken to them about palliative care. She was cold, didn't listen to them or answer their questions. At the time there was room for doubt. One of the things that she said pointed to MND was that Neil had a tremor, but he only got the tremor when he took the medication that was for myasthenia gravis and was to help him with his speech. We all hoped the consultant lady was just plain wrong.
We saw them again in July. They had been away on a holiday in Greece and Neil had got really ill and had been in hospital there. The doctors there confirmed the diagnosis. Neil and Sue were adjusting as best they could. They had been advised that Neil should get a port put in for feeding while he was still well enough because eating would become a major problem later on. They went ahead and did this. Neil said it was the most incredibly painful thing. In the end it was the right thing to do though.
Neil could still talk but if he talked fast it wasn't easy to follow. You could see the frustration because he was a fast talker, fast thinker - an enthusiast. He got one of these speaking keyboards so he could fill in the gaps when people weren't getting him. He was still working - pretty much up to the end. He did something high up in computer systems in banking.
Neil got into doing digital art on his i-pad and making up songs using AI. He'd been doing the digital art for a while actually, and sending stuff to Peter. When we were in Tenerife in December Peter got a number of tunes through from Neil on Messenger and we'd listen to them sitting on the bed. It was great to see him leaning into having fun and being creative and also almost unbearably sad. It gives me a pain in my heart thinking about it. Oh for that fucking diagnosis to be taken off him. He loved his music, he loved his art, he loved his work, he loved his wife and his children and absolutely loved his grand-kids.
So by the end of February we were hearing that Neil was having a really hard time with his breathing. He couldn't sleep lying down because he couldn't get a breath. It was making him feel panicky all the time. Various things were tried but I guess nothing really worked, or worked for long. Peter went down for the day with his sister Anne, scared about how bad it was going to be. Neil was tired and having to manage his time and energy - having to retreat and rest but doing some stuff with them.
In April he lost consciousness and was taken into hospital. It looked like he might not last the night - but he somehow swam his way back up to the surface. I think what was making him lose consciousness was that the carbon dioxide in his system just would not clear, he couldn't get enough breath. He was stabilised in hospital for a few days and we all went in to see him. He was fully conscious but he couldn't see over his breathing mask to type on his talking machine, and he was tired anyway. That was the last time I saw him. In a couple of days he got all the family in and they all said their goodbyes, because he was going to come off the mask which he was hating. He died in the early hours of April 22nd with his immediate family around him.
The family did all they could to make something positive out of the situation. His niece Amy, who didn't run at the time, decided to run a marathon to raise funds for the My name'5 Doddie Foundation. She took to running easily and completed the Edinburgh Marathon that has just been in a sub 4.20 time. In better conditions she will go sub 4 easily, but the weather had just changed from cold to hot pretty much over-night and so adjustments had to be made.
Ryan - Neil's youngest son -and his partner (soon to be husband) Brian signed up for a half marathon to raise funds for MND Scotland. They did that at Edinburgh too. We set out to cheer them on but got caught up in several transport snarl ups on the day and so missed them and were only just in time to cheer on Amy in the marathon.
All the grandkids did the shorter races on the Saturday and managed to raise several thousand pounds for MND Scotland.
Their fund-raising links are below if you wanted to contribute;
Amy, Ryan and Brian and the grandkids
It would have been lovely to join in with all this and it was disappointing to be side-lined and unable to run.
Thinking I would write this I was wondering this morning if I have any photos of Neil and was delighted to find I'd blogged our Death Swim. This happened in the middle of the winter 2014 - 2015 when Peter and I were going in the sea once a week on our submergathon. We had been round to the Buchanan's for Xmas and Ryan, Neil's youngest had said he wanted to come on one of our "Death Swims". A couple of days later we went to Gullane and did it!
Here are some pictures of us with our winter weight on! It was a fantastically cold day, the 29th December 2014 and only fools would dive into the icy sea on a day like that. So here are some pictures of some fools :-).
I wish we'd had the chance to do lots more things together but Neil's life was busy and full with family and work coming first, and you can't hug all the cats.
