As we approach Christmas 2018, my life is a constant round of medical appointments. Last week i attended St Johns Hospice to meet the whole care team getting stuff in place for the future.  Today I’ve spent a few hours at Papworth Hospital having my respiratory system measured/monitored, results recorded, in a months time i go back and do it all again. Their way of measuring the speed of progression of this dreadful disease.    In between appointments I am spending time “banking my voice” the MNDA charity have loaned me the equipment necessary for this task.  Another sad fact of this disease is that i will lose the ability to speak, thanks to the MNDA mine will be recorded for me to use.  

Physically my legs are weak but im still mobile and able to walk short distances. My breathing at night has been massively improved by the addition of a fan to the bedroom.

Thank you all for your donations, it will all go equally into research for a cure and also towards helping peoplelike myself cope with the challenges we face on a daily basis.