No.150. Wheelchairs and breathing tests.

Well today was an eventful day. We left home early to get to Truro for Chris's wheelchair assessment. We thought we would hit the morning rush hour, but must have just missed it so arrived early. Thankfully they were happy to see Chris straight away. I was dreading this appointment as we had been led to believe that it would be hard to get an electric wheelchair. I had visions of me having to beg, but it wasn't like that at all. The physio there was lovely, all he wanted to do was check Chris's needs and measure him up. They are actually providing him with a MNDA recommended wheelchair which is brilliant. I was advised by a fellow MND warrior to ask for a riser seat. They said they could build the chair with one, but that we would have to pay for that attachment. We can just about manage the cost, but we are hoping the local MNDA might be able to help as they have a lot of funds that need using up else they will all go to head office. Chris tried the demo chair and he was pretty impressed. They also said it would probably be ready in four weeks. Well as you can imagine we left there pretty content. Chris would be getting some independence back at last.

We then spent a nice couple of hours with Chris's sister where we had lunch and then went back to Truro again in the afternoon for Chris's respiratory checkup at Trelsike. Yet again the nurse had trouble getting blood from the artery in Chris's wrist. This test is to check the oxygen and carbon dioxide levels in his blood. I could see it was really hurting him, but he said nothing and just bit his lip. She managed to get a small amount out on the second attempt and then it wouldn't stop bleeding! That was then followed by the 'huffy, puffy ' tests as I call them or the 'blow job' as Chris calls them, as the nurse shouts out, blow, blow, blow and suck, suck suck.!! These are to check Chris's respiratory muscles, which basically involves him puffing, blowing and sucking into various devices. He always finds that really tiring. Once that was done there was a lot of waiting around for the blood tests to come back and then waiting to see the consultant.

Firstly the consultant said the blood test results were normal which was brilliant and we were both really relieved about that. Chest problems are one of the biggest worries with MND. He said his chest muscles were weaker, but he said it is also harder to do the blowing tests properly as the facial muscles get weaker as time goes on, so those tests aren't quite so reliable. In spite of his chest muscles getting weaker he is still able to ventilate his chest well which is the main thing, so for the second time today we left an appointment happy.

Who would have thought a year ago that our lives would have changed so much because of MND, that we are excited that Chris is able to get a wheelchair. How quickly this becomes our normality. Looking back at life before MND, is a bit like watching something sink into deep water. It slowly disappears and becomes unattainable. We mourn our normal lives before MND, but strangely we just learn to get on with how it is now. We are thankful for small things and something like a normal respiratory test is a big deal, because it means more time. Chris wants to live and those chest muscles, well they really are the breath of life. 

So today in this living nightmare is one of those rare good days as far as MND is concerned and for that we are really thankful.