Sunday 22nd June marked two years since I was diagnosed with motor neurone disease.
To mark the occasion, rather than offer my usual text-based ramblings, I thought I’d share some video-based ramblings instead.
As always, I love to read your comments down below.
Also as always, I nattered on and completely forgot to cover the most important part of my video agenda – the Thank Yous!
These are so important to me that they deserve their own post, so I will be back soon!
Stay healthy everyone.
Simon
Oh Simon, bless you for keeping us all up to date with where you are and how things are going. It does make you think that you should live each day to the fullest. I have to have a full knee replacement on my left leg (following my half knee whilst at Nationwide) and I feel so silly to be frightened and wishing I didn’t have to go through with it, however, I see things very differently after your fantastic and informative video. You have given me such strength and for that I thank you. Wishing you and your family all the very best whilst trying to navigate the changes and challenges of every day. Stay safe mate. Janette
Thank you so much, Jeanette, and I wish you all the very best with the surgery 🤞
Hi Simon,
Thanks for the vlog update 👍
I like that the new loo has a turbo mode.. I wonder how they devised the parameters for that.. 🤔
Stay strong,.hope to see you soon.
Me too 🤣 I’m not tried it, though my son is a fan. I have visions of being shot up through the roof
I watched your latest and really educational update with my own annoying and really noisy fly buzzing around my lounge so you were in good company! Made me think of the ‘fly episode’ from Breaking Bad… 🪰 And I think you look great with the ‘few extra pounds’ so you keep enjoying that local cider 🍻 😊 x
Thank you, Heather! A kind, as always 🙂 should have thought about those extra pounds years ago, eh. I’m now adding a healthy quantity of whiskey into the mix, so it is only up from here 😆
Too right!
Oh darling, thank you so much for your blog today which must have been really challenging to record. You are brave and beautiful and in the forefront of my mind all the time. See you soon xxxxxx
Ro xx
Cheers Ro and very much look forward to seeing you tomorrow 👍
Hi Si!
It’s so good to see your face and hear your update. You are an absolute rockstar. Sending you south love and really hoping we can all get together really soon. Over the summer break maybe (although very aware you said in the update how hard anything is!). Huge love
Shelley & Ad x
I always wanted to be a rockstar, thank you 🙂 never expected it to be quite like this, but hey-never look a gift horse in the mouth!
Thank you for sharing and being so honest
I am sure that you are raising awareness by making these posts
Hope you and the family continue to make happy memories together
We are, thank you, as much as my energy allows!
Totally and utterly inspiring amigo! Genuinely lost of words as to how to respond – other than to say you are one impressive fella. When I look at the challenges I face with my days… a grumpy Great Dane, a constant manic work life
and a husband “whose beauty is too overwhelming to contemplate” (he insisted I insert that otherwise he’s threatened to make me cook something), you put everything into perspective! Can’t wait to see you soon and attack that bush in your garden and show it whose boss!
Richards beauty is indeed a heavy burden 🤣 can’t wait to see you Dude
Hi Simon,
I really loved listening to your update and hearing how you’re doing. You’re such an inspiration, managing to talk about MND, its symptoms, and how it affects day-to-day life. You have an amazing gift for communicating, and for reminding us to be grateful for the little things in life that are so easy to take for granted.
I just wanted to post here that my colleague is raising money for MND by walking, climbing, and hobbling up and down the stairs at the Advanced Wellbeing Research Centre in Sheffield (where I’m co-located) 227 times, until he’s covered 26 miles.
Here’s a link to the JustGiving page in case anyone in your network would like to donate. Even though you don’t know him, it’s all going to the same MND research cause:
https://donate.justgiving.com/page/alex-bugg-1
PS: Sending love to Ria and your little boy xx
please give Alex a huge high-five from me, we really appreciate it here in the MND community 🙂 I will add a link to his fundraiser to my fundraising section of this site, if he is okay with that
Hi Simon, you are very brave sharing your update and whilst the topic is difficult (to say the least) i really loved listening to and seeing you in action. Thoughts and love are with you from your friends in Sydney. Daniel
Cheers Dan, keep surfing and living the high life down under for me 🇦🇺
Hi Simon,
I love your blogs and always look forward to it. You were in the wrong profession if you ask me ☺️
Regards,
Aysha x
I might have to agree with you there, Aysha! Thank you for continuing to read my ramblings x
Dear Simon,
I am still here, deeply thinking of you such a lot.
You are just truly a very, very impressively and extraordinarily and exceptionally and beautifully remarkable person – you really are.
Susan xxx
So good to hear from you, Susan, and thank you for continuing to follow my blog. Such a kind message!
Fantastic to see you Simon. And thank you for such an honest and clear update on how you and the family are doing… both pre- and post-cider!
You are absolutely right, MND will be beaten and it will be people like you who will help us to get there.
Keep alternating between the cider and the coffee… sounds like a winning combination!
Sending lots of love from south Wales
Ceri & Jeremy X X
Damn straight, we will get there in the end, my friend 👍
Ro sent me your blog.
Hang in there brother. You’re well loved. Dick.
Thanks Dick,, hope you’re well – thank you for reading my blog 😊
Thank you, Simon! I have been thinking of you since your last post and hoping you are ok so I really appreciate the update. I hate that this is happening to you and your family so much. But I love that I’ve seen more of you in the last 2 years than in the previous 20. You are still the same amazing person you were at 18.
Do you remember the photo of my dead cat on my computer desktop?
Humour will see you far. I’m so glad you’re still laughing. xx
Was it really that long ago 😱 Now that you mention it, I do remember your poor dead cat on your desktop background – dark humour for the win!
Another informative, moving and eloquent dispatch Simon.
I’m so sad this is happening to you and your beautiful family. But your grace and humour in the face of it all is such a lesson for how to live, and live well. Keep going.
P.S “Go away for ten hours, have a few drinks and come back to it” was an approach that served me well when I had writer’s block at uni. Enjoy those ciders!
Thank you for sharing this. I had no idea about MND before your diagnosis and this video brings it to a whole other level of understanding.
Your last two years have been intense. I love your blog but this really captures the physical changes and mental impact. I am in awe of you, especially the clinical trials. But more so the way you communicate and the mental strength to talk so candidly about your experience.
For what it’s worth, you are in my thoughts and I am learning from you. I hope I can be half the man you are – you are supporting others impacted now, those who will be diagnosed in the future and your family – whilst still reflecting on your own life. I am not sure I would be that strong in the same situation.
Loving the dedication to coffee and cider! I have to say, you look great! Maybe you always needed an extra 20kg! Maybe a West Country cider review blog is the next project?!
Love to you and you family mate.
Simon, so lovely to see your face and hear your update. What a f@cking legend you are and I appreciate that it might not feel that way but, to have the energy, motivation and enthusiasm to update this podcast is extraordinary! Thank you for taking the time to do it. Also, I am back for 5 weeks in December so will try and plan a trip down south and pop in if that’s OK with you…? I can bring Tim tams and any other requests you may have 😊 xxx
Thank you, Simon. This disease we share is truly terrible.
I wish you the best.
Simon, thank you so much for sharing what has been happening. It seems like yesterday you were back in Sydney and we were catching up. Glad to see that you are still trying to stay in good spirits despite it all. Looking forward to hearing (or reading) your next blog. Keeping you and your family in our thoughts. Stay strong xx
Hello Simon,
Your in Rosemary is a dear friend of mine – she sent me the link to your blog. I hope that is OK.
You have met my niece Charlie and her husband Paul. Charlie’s sister, my niece Georgie, also has MND.
There are no words that can adequately describe the heartache and devastation this cruel disease causes.
Your blog is many things – factual, outstandingly courageous, sad, hard hitting – I could go on. Yet with your blog you give it to us between the eyes just as it is…..all with your wonderful smile. Bless you and thank you. With love to you, and your precious family.
Sue