23/6/14
Well, I`ve been feeding Chris up, full cream milk, mayo on everything, so weird for me as someone who has spent her life dieting ! He has good meals anyway and found the 2 milkshakes the GP prescribed a bit too much, so he cut it down to one a day. It`s kind of paid off as he gained 4lbs which was brilliant. The consultant took some blood tests too and he can start on Riluzole. This is the only medication or treatment available and it will give him an extra 3 months, better than nothing I guess. He starts it tomorrow. His mood has improved too which is great.
We try to be positive, but it hits you now and then. Sometimes Chris says things like he probably will never meet his grandchildren and that he thought we would grow old together , those things choke me up, but by and large we try to get on with life. He can still drive a tractor and checks the cattle everyday, but the heavy work has all fallen on his brother and our new apprentice, hence changing the way we farm. The farm is Chris`s life, it is tough for him letting go. The health professionals all say he should rest more, but one day he won`t be able to do anything, so I try not to nag too much. The farm has been having it`s own problems and father-in-law, at 92 , is not well, though still very much in charge, but thankfully, sister-in-law and her hubby have helped get things back on track. Life is a bugger sometimes.
On a more positive note, just after Chris was diagnosed, I saw on the MNDA site, that they promote `Bake it` days so I went ahead and arranged one in our local village hall, coincidentally on the 21st, I had no idea it was Global MND day at the time. People were very kind and donated lots of cakes and money (including £100 from the parish council) , though I was panicking on the day because the turnout was low due to people having other commitments. At the end of the day though, every cake went and we raised over £600 which blew us away !! Seems the village were touched by Chris getting MND, it made us feel very humble. Our youngest daughter, a songwriter, entertained us with her originals and covers too. We did it all as a family , with no other help, that was important I think, for us to do this together, united in our fight against MND.
Yesterday, Chris said he was having trouble standing up in the shower, so I`ve had to chase up the shower seat that is on order from the OT team ( occupational therapist ). A sign of this disease`s slow onslaught, it is obvious with his speech too, which is slowly getting worse. Leave my husband alone you hateful MND !!!
