RE: Thanks to Zengas17 Dec 2021 12:21
Because of the anonymity of these boards, I for one have often wondered what the people behind their pseudonym are like.
The fact that Agadem kept his story quiet until he saw this opportunity to fundraise speaks volumes.
Thanks to all of you who have donated so far and for those who want to donate to thank Zengas, Agadem and others for their contribution to our knowledge.
www.justgiving.com/fundraising/porschefund
Agadem's story. (Part 1)
I’m 57, was born in Stoke-on-Trent, Staffordshire and have lived here all my life. Hard work and sport have been extremely large parts of my life, having been employed for 29 years with BT and self-employed for 12 years. In my spare time I used to love playing football, golf and squash. Although I can’t participate in those sports anymore, I still manage to work out on rowing machines.
As a kid, after my paper round it was always off to the park with my mates to play football, throwing our jumpers down to act as goal posts. I was always the last out, usually being thrown out by the Parkie ringing his bell and closing the gates behind me. During my teens my addiction to football continued and I played in teams with the likes of Robbie Earle who went on to play for Port Vale before moving to Wimbledon and being part of the ‘Crazy Gang’!!!.
In addition to football, I also relished playing squash (probably my favourite and best sport) and golf into my 20’s and 30’s. Being a Staffs 2nd team County squash player was probably my best sporting achievement whilst also being a very keen golfer playing off 13.
During the mid 90’s (when I was in my early 30’s) I noticed the muscles in my legs getting weaker and my standard in all sports began to deteriorate. Very long story short but after my initial visit to the doctors, my blood test levels for Creatine Kinase which should be in the range of 200 – 395 returned at 14,000. I was informed that very serious muscle wasting was taking place but despite endless tests and biopsies, I did not get the diagnosis of Limb Girdle Muscular Dystrophy 2L (LGMD2L) until 2011. The gene which causes the disease, Anactomin 5 was only identified in 2010 and I suspect it was my last muscle biopsy which helped to identify the gene.
Although I’ve always worked, I had to finish playing football and squash around the turn of the century with my last game of golf being in 2005. My walking and balance are now poor and will continue to deteriorate until I become wheelchair bound. Orthotic knee braces are an absolute godsend to help minimise my falls and I also have a mobility scooter which allows me to enjoy my visits to numerous National Trust parks.