My name is Sarah, often shortened to Sar (rhymes with air), I’m 51 years old and have Motor Neurone Disease (MND). I live with my wife, 2 cockapoos and 2 cats just outside Cardiff. I’m actually English but have lived in Wales for 11 years and consider myself Welsh in spirit, heart and soul.
I was diagnosed with MND last summer (August 2019). Mine has been a rapid progression and I can no longer walk, talk or eat, with weakening arms too. MND is untreatable and incurable and is always fatal, usually within just a couple of years. So it’s been a pretty awful few months. But I’ve received brilliant support from the NHS in the form of an occupational therapist, physiotherapist, speech and language therapist,nutritionist, respiratory nurse and a dedicated team at an MND clinic.
I also have a fab motorised wheelchair and was able to bank my voice before I lost it and now have an app I can type into which then speaks in my voice (albeit a synthesised version). Actually I only managed to do 70% of my voice banking before I lost my speech so my wife completed it for me, hence the slight Welsh twang every so often!
In January 2020 I was given access to a care package which means I now have 2 carers coming in 4 times a day to wash and dress me, get me up (all transfers are done via hoist), take me to the toilet, and get me back to bed at the end of the day. They are brilliant. Being washed, dressed and toiletted by strangers takes some getting used to but I’ve adjusted quite easily and we’ve had some good laughs along the way.
That’s what inspired this blog really. I wanted to share the brighter side of living with this awful disease because it’s so important to try to stay as positive as possible. I don’t always succeed but these are my musings. They won’t all be cheerful but they will all be brief so please sign up for updates. I hope you enjoy!