After they left Chris immediately got out of it and sat back in his chair. I asked if he wanted a photo of himself in it and he said no. I suddenly realised that he wasn't exactly happy about having this wheelchair. We had a little chat and he admitted that it was making him have to face the fact that the MND is progressing and having to have an EPIOC wheelchair, well that just made it hit home. I understood how he felt, but I told him to not think that way, but to see it as a way of getting some independence back again and it will also help me and he knew that, but facing up to this disease, well that isn't always that easy.
The WAV Kangoo (wheelchair access vehicle) is being delivered tomorrow. Adam, the Renault rep, is down our way and said he would deliver it which was good of him. I hope Chris copes with the arrival of the WAV car OK.
Chris's speech was much worse today. Quite often I had trouble understanding him. I mentioned it to him and he looked bemused so I asked if he had noticed a difference and then he said yes and just laughed, typical Chris. I wondered if there was a pattern? As the disease progresses his voice seems to get a little worse first and then so does the rest of him. The MND seems to flow through him like a wave.
I heard of someone today whose battle with this evil disease has become too intolerable and I, even now, cannot begin to imagine what it must be like to live with MND and care for, someone in the later stages. My heart breaks with every loss of life to this bloody awful disease and I know that will be our life one day, of that there is no doubt. As this disease progresses and affects Chris and whatever decisions he decides to make on this dreadful journey, I will be there for him and more importantly support any choices he may make. None of us know how we would cope to have so much of who we are taken from us. I just pray and hope those days are a long way off for us yet.
