We tick along pretty much OK most of the time, emotionally anyway, then something will flip a switch, something trivial usually, but then the flood gates will open and it suddenly hits me big time that I am going to lose Chris one day. I try not to cry in front of Chris because I set him off, but sometimes we do just have to share the sad moments and have a good cry together. We usually then find something to giggle about and we reset our mood to default and carry on as before.
It has been our village feast week and we managed to get up to the service on the Sunday and to the Quiz week on the Wednesday. We were actually on the winning team by some fluke, Chris and I never take these things too seriously, so it was a bit of a shock. They donated half the proceeds to the MNDA which was the best thing.
We also had a bit of fun doing a video for #MimeForMND.I could never do something like that in front of people, but messing around at home was OK and we had a good laugh. Poor Chris was exhausted after, I am glad we did it in one take!
Chris's speech has deteriorated more this week, it has been especially noticeable when we are in a crowd, even I have trouble understanding him at times. He hasn't got a wheelchair stand for his Tobi i tablet yet, the DHT and speech therapist are coming back in July, so he can only really practise properly when he is in his recliner chair ( he spends most of the day in his wheelchair ). I have found a speech programme that works on my iPad. It is very similar to the Eye gaze system except that of course you have to type in the words with your hands and it is a bit more basic. I think this will come in handy as a back up and to take out with us, ( the Tobi i tablet has already been back for repair once ). Chris actually asked if he could write things down when out, I think the iPad will be a good compromise and help him get faster on the keyboard. He can still type just about.
An appointment has come through to see the ENT team up at Plymouth the week after next. Chris's palliative care nurse was true to her word when she said she would get the doctor to fast track an appointment. It makes it seem a little scary and urgent. I understand why Chris needs to see someone now as the MND is progressing, especially in the throat/speech area, so like everything, we are always just trying to be one step ahead. The thought that Chris might need an emergency trachaestomy is the scariest thing ever, but then so is having to consider having one electively. That will be it then, no more speech, let alone the aftercare needed.
MND steals so much, but at least we live in an age where there are ways to push the tide back a little with it, to have available medical interventions if you need them.
I am so glad we can still laugh and have fun together, we still have that at least.
The link to our #MimeForMND video.
