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, 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. 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'.

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.

Fast forward 15 months. My colleagues have organised a mini symposium for me on Friday 4th April 2025 where lots of friends, family and colleagues will come along. I'll try to be a bit more proactive on filling in these pages after that.

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.

The MND Association focus on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland. By sponsoring me your money will help people affected by Motor Neurone Disease. Once you donate, JustGiving will send your money directly to the MND Association. Donating through JustGiving is simple, fast and secure, your details are safe - they'll never sell them or send unwanted emails.

Thank you for your generous donations!