Wow another year!

There is a real science to posting on social media; the right time of day, with photos, getting “mentioned” etc. But as it is the morning after the night before I think that is out the window! I suspect many of you can only just about focus on your cup of coffee!

Some of you might be reading this in 2019, some from a gutter, some from an unfamiliar sofa and even some from a prison cell!

As you can see from my photo, I have new glasses! Lost the last pair. Wait till I find who nicked them!

Now you can read reviews of the year all over the place, so my review will focus on my view of the world. Nothing too detailed, just some brief thoughts. I will use it as a route back to serious posts for a while in January. I must admit, my recent posts have just been me, enjoying myself!

I begin 2016 still walking, which I feel very very very lucky to be doing.

With the average life expectancy of an MND/ALS sufferer to be about 2.5 years post diagnosis, my disabilities are progressing slowly. I was diagnosed 19 months ago. Sadly most sufferers after a year are either fully paralysed or dead! “Jeesh Lee, this is a serious post already!”

Probably the most difficult thing currently for me is talking. There is no doubt it’s getting harder. However, like walking, you have got to keep doing it.

I started my blog in mid to late 2015, with two purposes –

1) To have fun

2) To highlight how common MND actually really is and get the UK Statistics updated.

Three weeks ago in December 2015, the MNDA updated the official disease statistics to reflect the real risk of the disease, and I hope this leads to greater and greater awareness of the disease in 2016.

Up to 1 in every 300 of us will sporadically and out of the blue be hit by MND in our lives. That is the most common rare disease I know! Objective achieved.

Now for the rest of the world!

Seriously, those of you reading in the USA, Australia and other places around the globe, please help me to campaign with your local MND/ALS organisations to use the Lifetime risk statistic rather than outdated incidence statistics. Awareness is everything. Please share my blog as wide as possible, by whatever means.

The real impact is now, clearly staggering. In an average secondary school in the UK, of 1000 pupils, 3 will develop MND in their lifetime! And that is every school in the country without exception! Until we get an effective treatment, this will continue.

So a quick recap of 2015 for me…..

It started with my wife, Jean, in the 5th month of her sabbatical, and after some good travelling in 2014, settling down to seeing what time would bring. We were enjoying each day.

I started to get closely involved with some MND research.

Strangely enough, aside having MND,  I have not had a sniff of a cold for over 2 years! What strong stuff huh! Keeping cold free is critical and the flu jab is now a regular thing for me, aged 52!

In May, I still felt capable and we decided to go abroad again. Just straight forward fun. It really is a matter of Carpe Diem.

After that, back in the UK, Jean was coming to the end of her sabbatical. Time was passing.

Our son was getting married in August, and this was going to be in South Africa. In myself, I was getting very worried about future travel, and we left it to the last 4 weeks before booking flights and hotels. In the end it went well, and it was one of the best trips I had ever done. South Africa, its people and the place are wonderful, and it doesn’t deserve the bad press it gets.

On a general point, I have never booked holidays or flights months or years in advance. Simple research has shown that the best deals can be had about 5 weeks before. But also, why book a year in advance, I might be dead!? Oh the humour!

In September, Jean went back to work. The right thing to do.

I am starting to make small alterations to our house. Next week, we are having new decking fitted to our outside office. At the same time, a ramp is being built to enable high-speed access in a wheelchair. I am contemplating whether to have edging barriers or not! Safety and security!

Of course, New year is about new beginnings. I have always viewed life as a circle starting in January, ending in December. So now back at the start, we are going to make some more short term plans for fun. I advise you all to do that. One event every month.

Hopefully you are now sober, and look forward to the new year. The best of luck to you all!

Right. Next week a real proper serious post.

”Serendipity or Strategy?”

Intriguing title huh! Something to look forward to after your first real week at work in 2016.

This post will be one of a short series of writings about why MND/ALS is so complex to understand, the role of social media (and why it can sometimes be a hindrance), but above all the fact that MND can be beaten, and will.

Oh, and the poll on the best Christmas song. Your votes showed Slade as my favourite. You were close, but in fact it’s Chris Rea and “Driving home for Christmas” that is my most liked. It just rolls and is so happy. Let’s hope Adele keeps away from Christmas songs in the future!


6 thoughts

  1. Hi Lee,
    There is an excellent article in today’s Irish times by a lady whose husband has MND .
    Martin Wallace


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