Whoever said life is fair - I hate that saying !!

Just got back from my sis's . She has gotten back her test results . She was found to be a carrier of the FIG4 gene ! Her docotor says that gene alone will not cause ALS , So that was the best news that I have had in a long time !! Got back and the love of my life has asked me to marry him - wow , I love him sooo much !! A couple days after that we were told that my fiance might very well have parkinsons disease !! He goes to a neuroligist soon to verify it . Our lifes - oh God . Things have changed drasticly already , he is not doing well at all . Will post again when we find out for sure .


Like many of you probably I am on an unofficial mission this Summer trying to make as many wonderful memories as I can with the man I love. Trying to find the perfect day. The perfect moment. It is a losing battle I know. Sadly we can't afford for me to stay home so I am working full time, trying to keep in touch with Family and Friends, all while trying to cram in as many outings as possible. Just in case.


july 2014. most all of the 'i still can do' tasks i listed in my 1st blog are 'now i can't do'. :-(

tests booked

Got a date for the lumbar puncture etc.....Am in for three days from the 23th.....will let you know how i get on..take care folks..x

My wrists & hands today

Hoping that this blog will help me to keep track of my symptoms. I've been shaky and my hands feel clumsy. Speech is raspy and hoarse. My jaw and neck muscles are sore. And today when i grabbed my bag i noticed that my wrists have these weird dents...