Iain addresses choir

4 October: Iain Muir-Nelson, the CMVC bass who has contracted Motor Neurone Disease, came to rehearsal on Thursday to deliver a passionate and moving address to the choir. Iain updated members on the progress of his illness and thanked them for their support in a very testing time.

Iain Muir-Nelson

Iain, who arrived on his motorised wheelchair accompanied by his wife Rachel, spoke  via a voice synthesiser before the rehearsal.   MND, he admitted, had robbed him of his independence and forced him to rely on others, “speaking included”.  Rachel, with her “resilience and practical way”, was vital in enabling them both to adjust to the new ways of life enforced by his illness.

Iain during a recent visit to London Zoo with the MND Association

His brother had helped raise the funds required to construct a wet room at his home and a carer now attends three times a week.  Iain wished to thank the choir for its efforts in raising almost £8000 to help support him. “Your generosity still astounds me,” Iain said.

Iain concluded with a traditional Scottish toast which began: “Lang may yur lum reek” which translates as “Long may your chimney smoke”, representing a warm and welcoming home.

In reply, and sustaining the national theme, the choir sang Flower of Scotland to Iain and Rachel before they departed.

Iain (right) sings with bass section in 2022

The full text of Iain’s address can be read here:

Good evening gentlemen.  I'm extremely sorry that it's been so long since I was last here, but I hope you'll forgive me.

As you can see, there have been significant changes in my abilities since you last saw me. These have taken time to adjust to and to adapt our ways of coping with them. I'll not lie to you, it's not been easy changing the way of dealing with the changes. But Rachel has such a resilience and practical way of working out how to manage each change and adapt the way of dealing with them that we're coping quite well with our new way of life as and when these happen.

MND has robbed me of pretty much all my independence now. I rely on others to do so much for me now, speaking included. What little independence I still have, will eventually be robbed from me too, but until it does, I will cling on to it as long as I can.

There have been some positives in all of this.  I now have a mobility vehicle in the shape of a Ford van, which I can drive the powerchair on and off. This was sorted out much quicker than initially predicted by going to a Scottish company. We were told the process would take six months to complete from application to ordering and delivery with a local provider. But we could try the Scottish company who hold much more stock and, being a much larger concern, would likely have the type of vehicle that would take my powerchair in stock. So Rachel gave them a phone and four weeks later we took delivery of the van. A considerable difference, I'm sure you'll agree. And another thing that Scotland does better than the English, lo l.

Things take an incredible amount of time to put into fruition. It's incredibly frustrating at best. I'm convinced panels only meet once in a blue moon, and then only on a day where there's a z in the month.

My brother began a Just Giving page to raise more money to put towards the adaptations I need to keep me at home and out of hospital. It's not reached a third of what's needed to build the wetroom downstairs that I need. I'm still managing to make it upstairs for the time being, but this puts a great deal of stress and strain on Rachel. The more I weaken, the worse it will get for her, so my destiny is to move downstairs into the dining room and, as there are no downstairs facilities, I need a wetroom. The quote for the building adaptations came in at £65,000! Thankfully, we managed to get the funds sorted out and I'm pleased to say building began three weeks ago and is set to be completed in November. The tracking and hoist is in place too, so, once the building works are completed, it should be a smooth transition for  me to move downstairs.

There are many visitors to the house these days. What were a significant amount of appointments at St George's Hospital in Tooting have now turned into a lot of people of one medical speciality or another, visiting the house any day of the week.

I now have a carer who comes in three times a week, whom we are extremely lucky to have. She has fitted in with us and our routines, yes, as well as my quirkiness, and she goes that extra mile when not asked. As mentioned, we are extremely lucky to have her. Rachel and I know that the amount of days a carer is here will have to increase as things continue to deteriorate for me, and we are already arranging for this to come to fruition when the time comes. I will also need a few more bits of equipment, such as a hospital bed and a showerchair to name a couple.

There are still moments of rather ugly crying but we try to find a least one humorous thing in the day to laugh at and if we can't find one, we just laugh at me.

I would like to take this opportunity to say a massive thank you to you all for your efforts in raising almost £8000 for me. Your generosity still astounds me, and I am still amazed at the efforts that went in to making that happen. A simple "thank you" doesn't do justice to the amount of gratitude I have to all but, "Thank You". You were amazing. The money has come in extremely handy already and has been so helpful. Thankfully, my employer didn't object to my application for ill-health retirement, just as well, and the lump sum has topped off the money for the wetroom extension.

Can I leave you with a traditional Scottish toast: "Lang may yur lum reek, We're no awah to bide awah, Here's tae us, Far's like us, Dam few, an their aw deed!"

If you would like a translation of the toast, I'd be happy to send it on. 

Kindest regards 
Iain MN