Chris takes so long to get ready in the morning these days. I asked him if he needed me to help him get washed and dressed, but he just gave me one of those looks that said a definite no, so I let it be. He still chokes fairly regularly, though thankfully not as bad as the attack he had the other week. His GP prescribed him Lorazepam which he can put under his tongue to help him relax if he has a bad choking attack, but I know he is reluctant to take it, hopefully he won't need too.
The Fresubin bolus drinks turned up yesterday, plus the higher calorie night feeds. At least that takes the pressure off his meals a bit. Chris is still enjoying having different ice creams and chocolate. Lindt chocolate balls are his favourite at the moment. Baileys ice cream goes down rather well too. He even manages his whisky, as long as it is in a Baileys drink first. That way is doesn't seem to cause any choking problems as Baileys is so much thicker.
The physio came to see Chris today and she said she could see Chris's balance had gotten worse and she decided it was time for him to be referred for an EPIOC wheelchair, so we'll see how that goes.
Last evening was the first time Chris had been able to practice the Eye gaze computer. It took a while to get it set up properly, but Chris is slowly getting the hang of it. He can only do it for a little while as it is tiring, but they say your eyes get stronger with practice. We had to recallibrate it again, but that is all practice which is good. He is determined to master the Tobi i as he said he didn't want a silver dot stuck to his head.
There was a special APPG meeting in Westminster today to discuss communication aids. So many people die without a voice. The south west is one of the better areas for supplying equipment, sadly it is not so throughout the rest of the country. I hope this meeting ensures that everyone gets access to the equipment they need. My biggest fear is that Chris will have to go into hospital one day and if he is unable to communicate, how will he be able to express his needs? There are so many horror stories, you cannot imagine. We are are grateful to those who have MND who attended this meeting and to those who either work with people who have MND or have been touched by it. I hope it was not in vain.
When I read about people who are fighting MND and are going into the later stages, I feel so sad. There is one family going through this right at this moment and my heart goes out to them all. I know this will be our future one day, but I cannot let myself go there yet. Five people a day die from MND, diagnosis is a death sentence, plain and simple. I wish with all my heart this weren't so.
Please dear God may there be a cure sooner rather than later. Give people with MND some kind of hope......please.
