A BAD SLEEP

A Bad Sleep... why? Well tomorrow the assessment team come to work out possible access to my home in Tod... Don't know what will happen , but depending on what does happen I think I will know more about where I will be and how I will operate . Moving is always stressful but with MND I really think it is very very stressful! However on the plus side my friends have all chipped in and have offered to help. ... and actually I will need help, as I simply cant do much. 
The feeling about the car decides me more and more that maybe a car with a hoist will be a good solution as if I have one where I can drive from a wheelchair... will I get the use?... maybe then will be the time to let taxis and friends take the strain. (Thankyou friends!!).
I had been given the number of man in Walsden who has MND ( Number given by my hairdresser) and eventually I rang him today. He has ALS and is one year on from me.We spoke whilst he was wearing his aid for breathing.. I could understand him, but it was difficult for him to hold the phone, so we didn't chat for long. He does have a partner so can use a special chair to get up his steps... but this is out for me as you do need someone to help you... bang goes independence!!!.


I also got a call from Prof Shaws secretary at Sheffield today. I am to go into hospital in Sheffield for more tests on May 9th, for two nights.  Then maybe get on the new drugs trial.... fingers crossed .....and fingers crossed it works.....   and fingers crossed I'm not one who get the placebo.....  some people have to!


I'll end with a copy of the poster for our   "a-MAY-zing" exhibition. I took it to be printed today. Parked on double yellow line, stopped by warden as I was about to set off home and was able to show blue badge... so all's well there then! Blue Badge Rocks!!!! Yey!!!

Oh NO! Just realised no proper dates!!! I'll have to go to printers pdq tomorrow!!!




HUG ME, I'VE GOT MND