It has now been over 8 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 (or so!) blog, but also with some unique research commentary.
I am very analytical, and when diagnosed with such a disease, you naturally 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. The world of misinformation is rife. It has grown even in my time living with MND.
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 over the last 8 years 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, developed a series of very specific research commentary posts, sub-titled the “Devil is in the Detail”.
I decided to write these missives 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 on the blog, 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!
Some historical posts that might 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 your favourite MND or ALS charity.
More recently I co-founded the United2endmnd campaign to drive UK Government investment in targeted and translational MND Research. You can read all about the campaign on United2endmnd.org.
Lee (aka onein300, the MND blogger)
Living with Motor Neurone Disease 