This is my first post, i am 49, live in Beckenham, diagnosed 10th july 2019 with limb onset at Kings College after having twitching in my right bicep and tricep back at the beginning of 2016.
I am devastated, firstly because i was a firefighter in London most of my adult life, which i had to give up on 10th July 2018! A year to the day before my diagnosis! Secondly because i genuinely feel well and am still struggling to accept this.
I am heartbroken as i have my amazing wife whos life has not only been turned upside down in every way but, waits hand on foot for me to do everything she possibly can to make my life easier. Also i have my 4 perfect boys, 14,13,11 and 3. To tell them that their dad has this and what will almost certainly happen is the hardest thing i have ever done. Harder than anything i dealt with in the brigade and, even harder than dealing with my daughter tragically dying in 2003. 😭😭.
Seeing my dad, my mum, my sisters and amazing friends suffering is so so painful for me. It would be easier mentally if i had no one around who cared is how i feel.
What makes this so surreal is that i was a powerlifter, big, strong, competing for great britain all round the world winning gold medals lifting massive weights, looking like i were cut from a single piece of granite, and now, my body, and strength are slowly, silently and painlessly without any commotion, is melting away!
Well heyho, heres to fighting this demonic death sentence i/we have been cursed with!!!!! I won't lie down and take this without a real fight. A great phrase i was told many years ago which has never been more prevalent is:
ITS NOT THE SIZE OF THE MAN IN THE FIGHT, BUT,
THE SIZE OF THE FIGHT IN THE MAN.
So, hello everyone and look forward to posting some informative, positive helpful and useful posts........💪👍