It has now been over 5 years since I started my blog. I am now a serious MND/ALS blogger! I am riding the rollercoaster of life!
I have Motor Neurone Disease (MND/ALS), and I started this blog to have fun, yes fun. It is about my living with MND, but with an absolute splash of humour. I learnt early on that no wants to read about a nasty disease, so my blog has none of that. Rather it is hopefully an amusing bi weekly blog, but also with some unique research commentary.
I am very analytical, and of course 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, recently begun a new 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 slow.
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!
Awareness is everything for MND/ALS. Not many people know what it is, and that this disease affects 1 in 300 of us in our lifetimes! More common that you thought? So why is it referred to as a rare disease??? And there are several names for apparently the same disease! Motor Neurone Disease (MND) or ALS (Amyotrophic Lateral Sclerosis). Is there a difference etc. Well tune into my blog to get all the latest info!
Take a look at my archives. Start at the bottom, and treat it like a box set!
Some 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.
Lee (aka onein300, the MND blogger)