I was diagnosed with MND shortly after my father Louis died in 2023. It was the week before Christmas and we (my partner Dominika and I) had been chasing a diagnosis for my odd symptoms, which included slurred speech. This included a 13 hour stint at A & E. The odd combination of symptoms stumped most doctors, which is understandable given how rare this disease is. My new GP (Dr Josh Scales), who I hadn't met at the time but only communicated over the phone, suspected something neurological and managed to get me a quick neurology assessment, within 3 months of my first symptoms. Getting the official diagnosis simply confirmed what we had begun to suspect through google searches but tried to ignore. It was devastating news nonetheless to be told I had the bulbar form of MND. I knew little of the disease other than what it's name suggested. What was shocking was how little is known about the disease. There is not even a blood test for the condition. Diagnosis is based on the combination of symptoms that present themselves (the phenotype). For a molecular scientist like me, this was hard to comprehend. It still is. I think it's fair to say, that there is no agreement among clinicians of what this disease actually is! What I mean by that, is it's molecular basis. It seems like the ultimate irony for a biochemist who has spent four decades researching the molecular basis of biological phenomena to be struck down by a 'fuck knows what it is' illness. Please donate to the MND association to help move the dial on this disease to at least 'we now know what it is and so can design potential therapies'. I have my own ill informed ideas about the cause of MND and its peculiar (and cruel) way of killing people which I might share later.

Since my diagnosis, I have received amazing support from my partner Dominika. Family and friends have also lent what support they can. The parlous state of the UK NHS is pretty much all we hear about in the news. I have nothing but praise for the outstanding professionalism of my clinical team. They support all aspects of my condition including speech and nutrition. Josh Scales has also been brilliant, responding quickly to my requests for new medications.

Fast forward 15 months. My colleagues organised a mini symposium for me on Friday 4th April 2025 which lots of friends, family and colleagues attended.

https://kleanthoussymp.wordpress.com/

June 2025. I was hoping to add updates soon after the meeting. This didn't happen because I was laid low soon after the meeting by repeated chest infections, resulting in a couple of stays in hospital. Probably a result of my going around hugging everyone at the symposium! The meeting itself was wonderful. Thank you all who came. I've posted some pictures from the meeting (courtesy of Yosuke Tashiro). I even managed to deliver a 5' speech using the SpeakUnique software I have been using to communicate since losing my voice. I am so grateful to the MND team at JR and Dominika for convincing me early on in my condition to record my voice so that a digital version could be created that sounds like me. Even the swearing sounds like me.

So where am I at with my MND? In addition to losing speech, I'm at the stage where I am unable to eat or drink. My nutrition all has to be delivered by a tube straight into my stomach (PEG). Certainly simplifies decisions about what eat. Now the goal is to try to slow my weight loss which i've just about managed to do. Although I've lost some strength in my hands I'm still pretty mobile which I hope will last.

September 2025. I was out of action most of August with pneumonia and the time it took to recover. I spent almost 10 days in hospital, the Horton in Banbury. This was by far the worst of the chest infections to date, the low point being having my lungs drained of fluid (twice) through my nose. Not an experience I wish to repeat. Even so, I have nothing but praise for the staff at the Horton. The care they provided (along with physiotherapy staff who came from the John Radcliffe hospital to see me) was amazing. For me, this was the NHS at its best. Many thanks.

October 2025. Talk about bad luck, I was struck down again by pneumonia in September, this time spending 9 days in the respiratory ward of the John Radcliffe hospital. As well as a great standard of care, the doctors, physios and nurses came up with an explanation as to why I'm so prone to 'aspiration pneumonia', which is when stomach contents are aspirated into the lungs. I won't go into the gory details except to say my susceptibility to this type of pneumonia is likely a consequence of several factors, all associated with how my MND symptoms are treated. Unlike the basis of MND, at least here we have a potential mechanism, and so a strategy for dealing with it. We're implementing these changes now. Hopefully, this will reduce the risk of further pneumonias. Fingers crossed.

December 2025. The changes we implemented had the desired effect. No pneumonias. However, it's not all been that rosy. In early November, I went for a botox procedure that had been recommended for helping control salivation-this is one of the major problems MND patients face, along with all the other symptoms. The procedure didn't go well (it doesn't in 2/3 of patients). Salivation has worsened. So much so I've been house bound for a month dealing with it. Saliva doesn't sound bad, but this stuff (more like bubblegum than normal saliva) can choke you, moistening it with saline nebulisation and sucking it out is the only course of action. I've become a bit of an expert in sucking out these bastard zeppelins, as I refer to them. I remove the zeppelins with a suction device (christened spitoon) not unlike a suction pump you might find in a lab. Gross to witness but extremely helpful.

Before signing off, I want to thank you all for your generous donations. It has been an unexpected byproduct of this experience to see the comments from friends and family, colleagues and strangers, often with stories to tell of their own. If your new to the site, please drop an anecdote as to what brought you here. For this reason, and because I've reached the £10,000 milestone, I've decided to raise the stakes yet further to £15,000 in the hope that more people will visit the site with their stories. I've been particularly touched by the stories from people whose family members suffered from MND or other neurodegenerative illnesses.

Today, 19th December 2025, is the second anniversary of my MND diagnosis. I was given two to three years by the consultant. So I guess I'm doing well, which Dominika keeps telling me. I'm still able to walk, shower and dress on my own steam although these now leave me breathless - solved by 30 minutes on my ventilator, which is currently my favourite bit of kit along with the spitoon and nebuliser. Also got a new neck brace today from the Churchill hospital to stop my interminable naval gazing.

Colin