Yesterday Chris went to the Doctor`s Surgery to have a blood test. He is on Riluzole, the only treatment there is for MND. It gives people with it another 3 months. Not long you may think, but I`ve read it can delay the last stage , respiratory problems, for 3 months and I guess that is better than nothing. Chris has to try what there is I suppose, though I think some people don`t bother with it, it`s a personal choice. The only problem is that it can affect the liver, hence the blood tests. I believe he has to have a test for the first 3 months and then at regular intervals after. He hasn`t had any side effects from taking this drug, so hopefully the results will be OK. We also picked up some other medication for him, and 28 bottles of Resource milk shake to top up his calories. I have to say Chris has gained some weight which is good, so he has a buffer. He is still very slim though, always has been.
Last evening Chris had to go to a Parish Council meeting as he is a parish Councillor . He doesn`t want to give that up yet and nor should he, though he has always been a quiet participant anyway. He said he now represents the silent majority, that`s my Chris, always seeing the funny side of everything. He was especially looking forward to going up there on his mobility scooter, it`s only a mile away through the village, he used to walk, but it came to rain and he had to drive instead, maybe next time Chris.
This is all starting to become the new normal, I wish it wasn`t, but it is. Chris insisted that he wanted Weetabix with his breakfast again today, but again he choked on it. I told him that he will just have to accept that there are some things he just can`t eat now, so his breakfast will have to include something else, that will have to be the new normal. I used to like to paint, but since Chris`s diagnosis I just didn`t want too. I couldn`t concentrate and I felt that if I painted when he was in that I was wasting precious time with him. At the same time I have also been told that I must make time for me too. Today I actually felt like painting again ,so I shall do a little bit I think. That and my favourite music is the best escapism from this nightmare for me. For Chris it is to work and long may he be able too. I think it is kind of important the old normal and the new normal converge a bit. We can`t let MND have all it`s own way.
I`ve told some people locally about my blog, it does feel easier sharing this with people that I don`t know very well and slightly more awkward with those that I do, but I think it will stop people wondering and speculating how Chris is. That`s village life, you can`t keep much from people, but at the same time they are an amazing support and raising MND awareness counts just as much here locally too.
