Pain In The ALS Blog – Page 2 of 2

Thanks for your Support

June 9, 2017

Its a word often overused but I have been truly overwhelmed by the support shown from you all. I made a pledge to Becky to reply to every message people had sent. In my eyes if you took the time to contact me the very least I can do is respond. I still have lots to go through so bare with me.

Its been a busy time since we returned from holiday and trying to return my focus to work has been an issue. Who wants to work when you have only a finite time left – unfortunately bills to pay soon comes back and kicks you in the arse. There will come a time when I can’t work so I know I need to make the most of the opportunity I have… I have Las Vegas to finance after all !!

Fantastic family holiday – Creating Memories

May 10, 2017

We’ve just returned from a fantastic family holiday in Lanzarote where we stayed at Becky’s bosses (Gareth ‘Cooch’ Chilcott) house for the 3rd year running. As always, Freddie was a dream on the plane, especially on the way out when we were sat on the runway for an hour before take off.

You may have noticed I’ve travelled a lot recently, and now that I’ve made my condition public it might explain why !

I’m not really a possessions type of bloke, I don’t wear expensive watches, shoes or clothes I’m more about experiences… Hence the rather lengthy and extravagant bucket list. I doubt I’ll get through the lot but I’ll give it a damn good go (although when you have MND the price of insurance sky-rockets and that’s before I need any serious assistance) so watch this space.

Have you heard ?

May 3, 2017

I’ve become quite blasé about telling people now. Its not a job I enjoy as it can be upsetting for both the listener and the speaker, however it wasn’t always like that…

The first person I told was Mudders – I ended up sobbing outside a bar in Soho of all places, then Squirt and H as we were away on our annual London Golf trip. Next was my father (although he kind of already knew) and brother, then a few more close friends and then my mother (just because it takes longer to get a date to see Mum). I chickened out of telling my in-laws, I left that to Becky (sorry).

March 2017 Update – 1 Year In

March 1, 2017

March 2016 marked the ‘Estimated’ start of my illness – the first time a professional (Chiropractor) noticed weakness in my left arm. Thankfully (touching a lot of wooden stuff) progression has been reasonably slow and in the words of one of my Consultants “you’re not a third of the way through this yet so you’re not in the 3 year bracket”.

RIP Joost van der Westhuizen

February 13, 2017

Last week, I learned the news that South African rugby legend Joost van der Westhuizen had passed away after a lengthy battle with MND. I don’t like using the word battle as it implies you have a chance of winning, unfortunately I know this is not the case.

Diagnosis Death – What Next ?

October 10, 2016

I was diagnosed on October 4th although I had some idea what was coming as early as July 2016. While it didn’t come as a shock hearing the words directed at you are pretty numbing. He said it in such a calm, matter of fact way that it was difficult to take in. Unlike many nasty diseases there isn’t any ‘treatment’ as such. It runs its course at its own unique pace – all they can do is try and extend what life you have left. So what’s next ? This will of course be different for everyone but for me its easier to start with what I didn’t do.