Chris saw the speech therapist yesterday and she went over a lot of what the dietician said, but she also checked his swallow to make sure that it is still OK for him to eat orally. She said he could still eat with caution, but again advised using the PEG to top up his intake and take the pressure off eating as it is such hard work and because of his choking problems. I do hope things go without a hitch tomorrow, especially as we have to be at the hospital by 8.10am, that means a really early start for us. Chris also went to the GP to have another INR blood test done.
The speech therapist also discussed the speech technology that is available and again told us that the best that is available is on offer in the south west. She has referred Chris now, even though he doesn`t really need it yet. The people have to come down from Devon to assess Chris and they cover a wide area, so there is a long waiting list. It is quite likely that Chris may need it by the time that he is seen, hopefully he won`t , but who knows, that`s the unpredictable nature of this disease. I don't really want to think of the day when he can no longer speak.
As much as you don`t want to look ahead too much with this disease, you also have to, in order to be one step ahead of it. The help available often takes a while to sort, so the professionals have to act before certain symptoms arise. They have to make that judgement call. We decided at the off that Chris wouldn`t fight anything that was offered or advised like the PEG. The care that has been offered by Chris`s MND team has been wonderful and nothing has happened yet to change our minds on that. They have all been amazing.
Today is a breather before Chris's PEG op tomorrow, no appointments for him today. I told him last night that he always appears to be so positive and his words to me were, 'I just hate it, really hate it and what it is doing to my body.' I think that just sums it up really. MND is a hateful disease.
