It has now been over 6 years since I started this blog. I am now a serious MND/ALS blogger, and still riding the rollercoaster of life!
I have Motor Neurone Disease (MND/ALS), and I started this blog to have fun, yes fun! Yes, it is about my living with MND, but with an absolute splash of humour. I learnt early on that no wants to read about the nasty aspects of a terminal disease, so my blog has none of that. Rather it is hopefully an amusing bi weekly blog, but also with some unique research commentary.
But first, just how common is MND?
It is considered rare. However, the estimated risk in any one person’s lifetime is 1 in 300! Shocked? I was.
If your life was a single week draw in the UK lottery, your chance of getting 4 out of 6 numbers is about 1 in 2200!
So why therefore is this disease considered rare? Take a read of my Facts page to find out why (and why actually it is not). This awareness statistic is so important, I named my blog onein300.
I am very analytical, and when diagnosed with such a disease you look at what can be done, what research etc is going on.
I write articles about research, diagnosis, prognosis etc. I am straight talking and need real scientific evidence to support any claims.
I dig deep and try to bring a reality to this sound bite world we now live in.
I don’t want new sufferers wasting their time with hopeless theories, therapies etc. So don’t expect me to placate or agree with comments just because it’s nice. I have seen repetitive themes emerging and I hope you will find my blog useful if ever faced with such a challenge, be it MND or another equally difficult life situation.
I have, for example, a series of very specific research commentary posts, sub-titled the “Devil is in the Detail”. I decided to write these based on some serious criticism made against MND/ALS associations globally that appear to often abound on social media regarding speed of progress in research. Rather than comment on social media, I felt it best to write some appropriate articles on just why progress is sure, but can appear slow. Future posts in this series will focus on more detail surrounding both MND research and actually science in general.
In my non MND world, I have alter egos, the amazing Lord Bragg, and the delicious Pamela Bragg (see below). They pop up now and then to add spice to my stories, but also they may say things you want to say but you just haven’t got the guts!
The views expressed on this website are my own opinions (and can be quite random!!) and do not represent any view of doctors, consultants or associations etc etc.
You might even want to look at my archives. Start at the bottom, and treat it like a box set!
Some historical posts to get you hooked.
Serendipity or Strategy – this was Lord Bragg’s first appearance.
It’s amazing what you overhear – the charming Pamela Bragg first showed her face!
Every so often I will write a research update. It’s on my blog under the research tab, but if you are struggling to find the posts click on the following link.
If you enjoy my, sometimes, whacky look at a serious disease, perhaps you might consider donating to my MNDA fund?
All money goes direct to the MND Association in the UK.
Lee (aka onein300, the MND blogger)