My life with Motor Neurone Disease began some time before I knew it. This blog describes my journey to diagnosis and my attempts to cope with the disease since then.
Public awareness of MND has grown recently, particularly since campaigns like the ice bucket challenge. So, why am I adding to the list of articles and blogs? Firstly, and perhaps selfishly, I am doing it for myself. I have found that writing about my experience of MND has helped me to come to terms with having a terminal illness. Secondly, although MND symptoms vary considerably, I hope this blog might help fellow sufferers, their carers, and anyone else who is interested, to better understand the effects of this dreadful disease.
Links:
http://www.nhs.uk/Conditions/Motor-neurone-disease/Pages/Introduction.aspx
http://www.nhstayside.scot.nhs.uk/OurServicesA-Z/SpecialistPalliativeCare/PROD_210000/index.htm
Moments with MND 
Dear Mr Selley,
Yes, at 49 years old, I still can’t bring myself to call you by your first name!! My name is Julie Cryns (née Kennedy) and my twin sister Sarah and I were in your Economics/Politics class at Loretto back in….1982? Anyway, you may remember me/us as the sisters of Stephanie Geddes. I was NOT one of your star students, but I remembering enjoying your teaching even so. Was it you who allowed us to do a doughnut “run” to Musselburgh High Street in the middle of a double period??? It could have been Mr Armstrong, but I think it was you.
Like Sarah, who teaches history and modern studies Lomond School, I too have ended up in the teaching profession. After 2 years of teaching ESL in Japan and Spain, and about 13 years as a primary class/form/homeroom teacher in London and Kenya, I have ended up living in Ontario and teaching Core French in a large private school. My students range from Kindergarten to Grade 4 (Year 3?) and it is going well.
Sadly my husband Mark died of leukemia 5 years ago this July, but we have two beautiful children, Oliver (almost 14) and Savannah (12) and I feel very blessed. I miss Scotland, but I have a good job, a lovely house, and two kids who consider this their home. I do get back there as often as I can, usually every year.
I have only just learned of your tough health challenges via Stephanie and I have read your blog. I wanted you to know, for what it’s worth, that I am thinking of you and your family at this time. I will keep you in my thoughts and prayers.
Julie x
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I think the time has probably come for you to call me Richard!
So good to hear about your life since you left school, but I am very sorry to hear about your husband. I used to meet up with the various heads from Kenya, including The Banda, when I attended conferences.
I have seen plenty of Steph over the years (she probably lacked the patience to be a teacher!) and I saw Sarah a few years ago. 2 teachers out of 3 is pretty good going! It was dear old Mr Armstrong (my housemaster when I was at school) who introduced the doughnut run – and he always ate one himself. It would be great to catch up when you are next over.
Richard x
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Dear Mr Selley,
I missed seeing you when lots of my classmates did back in February, but ever reliable my close friends are…Tash and Ali, Jules and Heather… they told me about your condition and this blog and how much they enjoyed seeing you at the OL dinner. I was really sorry not to be there, having my little boy ‘s birthday that weekend (official excuse) and being slightly scared at the idea of returning to the school we left 25 years ago (real excuse).
I’m sorry I can’t tell you I have turned into a great economist, but I expect you could have predicted that! But I am running a vegetarian food business and manage to do all the financial stuff…i.e. counting!!
I am enjoying reading your blog and remembering how beautiful Scotland is in May.
Warmest wishes,
Flo Ticehurst
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Hello Flo
Good to hear from you and thank you for your comments. Good luck with the business!
Best wishes
Richard
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Thanks for the message Flo.I’m sure your ‘counting’ is good!
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Good to hear from you, been reading your latest post and hope the sun comes out for you again soon!
We’re busy this month – just finished catering at the Hay Literature festival and then Glastonbury in a week or two…although I don’t go to that one myself, luckily can stay at home looking after the kids, while my other half deals with the reveling hordes!
take care,
flo
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Hello Mr. Selley (Richard!)
You may or may not remember me. I am Sandy Meldrum and although you never taught me at Loretto, we sat next to each other every Sunday at Chapel. I was in the Chamber Choir and usually sat at the back row next to you.
I happened to be on the OL website and got a huge shock reading that MND had so tragically become a part of your life. I can only offer my heartfelt condolences and wish you the best that is possible in the months ahead. I had a relative who contracted MND so have a little knowledge about it.
I am now a music teacher and professional musician back in my home city of Glasgow. I returned here after I finished at Loretto to study music for 4 years at the RSAMD (now RCS – Royal Conservatoire Scotland). After my main degree, I decided to train to be a teacher and that is now my main profession, in addition to playing professionally. Lastly, I gained a Masters degree in Education so have certainly made up for my fairly average school exam results! I will be getting married next year to my fiancee Robin, who is from Pittsburgh, Pennsylvania in the States.
But enough of me – I just wanted to say hello and wish you well for the future.
Sandy Meldrum
PS I used this site as a reflective journal whilst doing my Masters degree although it is inactive now.
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Hello Sandy, How kind of you to get in touch. I well remember those days in chapel -and you certainly had a far better voice than I did! Congratulations on all your musical achievements and I wish you and Robin every happiness for the future.
With kind regards
Richard
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Dear Richard
I apologise for not coming into see you when i have been up to see our youngest.
When I am next in at Glenalmond I will drop in.
Is there a better time of the day or week?
Our prayers and best wishes.
Kindest regards
Richard
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Hello Richard,
It would be good to see you. Pop in anytime!
With kind regards
Richard
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Morning Richard,
I have just finished reading your book, having been awake since the early hours. Sleep evades MND folk some nights doesn’t it !
Your MND journey has similarities to mine and I could put myself in your place many times through the book. It’s very true that although we have the same terminal disease, everyone’s journey to their diagnosis and thereafter is different. I do find this difficult to understand. I received my diagnosis in August 2016 after experiencing symptoms for 2 years, and my GP having no insight or understanding of MND.
Fast forward to March 2018, I am 62 , and I have had to completely change the layout of my home, and converted the garage into a wet room and bedroom for me. I can no longer climb the stairs , so like you now sleep alone in my little room, but it is very comfortable. I walk with the aid of a walker but don’t know for how much longer. My arms are the most affected area and I am now using a tablet controlled with infra red dot on my glasses. The technology today is absolutely amazing isn’t it? With electric wheelchair , manual wheelchair, and all the other adaptations required I am lovingly looked after by my husband who retired 3 days before my diagnosis. His dreams of an enjoyable retirement , playing golf and walking have but been realised and I feel so guilty about that.
I also enjoy watching the wildlife and changing seasons through the window as you do and feel so much brighter when the sun is streaming in!
I hope that the sun is shining for you today , it I believe we have another weather warning for the weekend.
With very best wishes
Vicky Round
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Many thanks for your message Vicky.
Yes, all our journeys are different, and yet so similar! I doubt if many people can really understand how challenging it must be for you to write a long message like this. I am sure that you too have dark moments (mine often come as I lie in bed, unable to sleep, or move) but I strongly identify with your point about the sunshine – it makes a huge difference to my whole perspective on life.
With my very best wishes
Richard
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Dear Richard,
I have just started working as a home carer and a friend forwarded your blog to me as I am having a hard time coming to grips with some of the awful diseases that I have come across in the last 2 months.
I help a lovely man who has been living with M.S for 20 years, an old lady with dementia who I liken to the little girl in the poem ‘There was a little girl…’
When she’s lucid she’s so like my gran that I could cry, but when she’s not she’s awful. I seem to be the only one who can soothe her in these moments, her family live in dread of a bad day and practically hide from her cruel words.
Then there’s my latest friend, Paul. Paul has Motor Neurone disease. He was diagnosed 2 years ago, but in the last month has deteriorated so fast that he called my company in for help. He’s scared, sad, angry, frustrated. I am doing my best to help him adjust to the awfulness of it all. I am a natural empath and have psychology training, but it’s very hard to be upbeat when the situation is so dire.
So thank you. Thank you for sharing, for being able to verbalise.
It’s immensely helpful to me to be able to feel it from your perspective.
To hear your appreciation for your carers is heartwarming.
Sometimes I feel like an idiot for trying to hard, doing my best to bring a little sunshine into Paul’s otherwise dull and depressing day. To make getting out of bed, getting to the bathroom, even sitting on the loo something to be celebrated.
I’ve always known that it’s the little things in life that count, never more so than now.
I will be back reading all your blogs!
Much love ,
Lisa
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Hi Lisa,
Sorry for late reply, I’m a few months behind! Yes, MND does put things into perspective. You sound like a wonderful carer – we need more like you! Best wishes, Richard
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Hi Richard.
You don’t know me but I was a student of Elaine’s at Dollar Academy. She was our housemaster and a massive support for me personally (a bit like a mum). I’ve heard recently about your situation and understand what you mean when you say this is often harder on those you leave behind. I just wanted to add my support to you all in this difficult time. Please give Elaine my best and I wish you bird song and sunshine this summer. Cris
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Dear Chris
Thank you so much for taking the time to email Richard. I remember you very well and the Dewar House antics! I hope all is good with you. I think fondly of those days in house. Much love Elaine x
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Hello Richard, you don’t know me.
I briefly met a lady many years ago who had MND. Her husband was caring for her and described the illness to me. It was the first time I became aware of MND. I saw your book recently whilst searching on my Kindle and have read it. I just wanted to say that I fully support Assisted Dying and have added my name to a list of supporters. The campaign will continue and will be successful.
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I am not sure if I should open this with Dear Mr Selley or Dear Richard…. It always feels strange to address teachers by their first name as that was only ever done in cheek behind their back, even for the younger models, as you were back that first year of girls at Loretto in 1982.
Jack Kelly has shared your news and I have been so moved by your story. Motor Neurone Disease, like so many, is a cruel disease and I take my hat off to you for the courage with which you are facing it, right to the bitter end.
I would not expect you to remember me from Loretto as you never taught me and I was only there for one year. Economics has never been my strong point! But I remember you invigilating my S Level history exam, keeping us entertained by delivering fruit pastilles to our desks. I remember that I was taking the exam with great reluctance as it was a sunny afternoon and I knew the A Level had gone wrong (I simply did not know enough after only one year of the A Level syllabus). I refused to write anything for the first hour as I wanted to hand in a blank paper as a gesture of defiance. I eventually succumbed and started writing until you had to drag my work off me at the end; I always remember you laughing as you asked me what I had been playing at. For what it’s worth, I got a distinction in that S Level, despite my D at the A, so the fruit pastilles clearly worked.
I also remember remarking to you at an OL dinner that you “used to be a teacher”, to which you reminded me that you still were! School life does go on after the pupils leave.
As someone who now works in PR, I congratulate you for what you have achieved in bringing attention to your case. You will leave a legacy through that as well as through all the pupils you inspired over the years.
I wish you well for the month ahead. I hope the sun is shining in Scotland and that England can deliver better results than they did in the first Ashes match.
With my warmest wishes
Susanna Flood
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Thank you for your kind message Susanna. I remember you at school and meeting you at the dinner. I am sure I was breaking some rule with the pastilles! Best wishes, Richard
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Hello Richard,
I don’t know if you got my “post” of 5th August (it was pretty detailed and may have been ‘moderated’ out altogether) but however you are at the moment, please know that I continue to pray for you and your wife and family. Christ alone knows what you are going through and what it is costing you all. Please believe he is with you in it – he knows all about suffering and grief, and has won an eternal victory for us over death.
(Don’t mean to preach at you – one of the hazards of being a retired minister I suppose!).
I’m sorry we have never met, Richard – from your writings, from what I’ve read and heard about you, you sound like a person it would be good to know!
With my kindest regards and best wishes as you face all that is ahead,
Mike
(Lind: Loretto 1962-72)
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Dear Michael, Thank you for your kind message. Kind regards, Richard
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Dear Richard
I met you some twenty or so years ago, when I was slightly more fresh-faced and in my first teaching job, at Loretto. You were the Depute Head (vicegerent, I think, was your official title) and you left a lasting impression on me: you were approachable, helpful and empathetic. I have endeavoured to model the way you treated people, in my general life and at work, hopefully to the same degree.
I admire your bravery and in drawing attention to the important issue of legalising assisted dying: a very important issue for a civilised society.
I wish you and your family all the best.
Yours
Angus
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Dear Angus, I remember you well – always very smart and an excellent golfer! Thank you for your kind words. R.
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