Nicola McFarlane
I was diagnosed with MND in May 2023 when I was 46. I had noticed that when I was at the stables with my horse that if my hands got cold they stiffened up and didn’t work well. I had also noticed a very slight lisp at times when I spoke. I also had fasciculations all over my body. I had googled my symptoms and was praying that it was anything but MND. I had my first appointment with neurology in May and was diagnosed within 10 minutes.
To say I was shocked at being diagnosed is somewhat of an understatement. Having already survived breast cancer 10 years ago and losing both parents to cancer in their 50s, I had focused my life on making sure I was as physically and mentally health as possible. I always thought cancer would get me and I certainly didn’t see a rare neurological condition sneaking up on me!
I grew up in Tripoli, Libya and was there when America decided to bomb us! I spent a year teaching English in Bangkok and when I returned I completed an MSc in Environmental Management. I have worked in the environmental sector since then, mainly with water although now I am project managing a river and nature restoration project. I am still working, but who knows for how much longer. Since my diagnosis I have won a new contract and client for my employer and can genuinely say I am still living and enjoying life. Although this new normal is very challenging and frightening at times! People often ask how I carry on and my response is that it would be pretty boring to spend the rest of my life under a duvet!
Doddie Weir, Rob Burrows and Patients United to end MND were a massive source of support and comfort when I was diagnosed. I am very grateful for the work that they have done. I genuinely believe that they have raised so much awareness and there is now significant money going into research. It is thanks to them. Having been familar with the world of cancer treatment, I was shocked at how different MND is perceived and treated. I felt written off by the 2 major MND charities in the UK and felt that I should go away and die quietly. Things need to change.
As Mother Teresa said “Not all of us can do great things. But we can do small things with great love.” I would like to play my part in making things better for people effected by MND and for those in the future.
We are United2EndMND - Changing the conversation 