No 200. 'Gagging for breath.'

I don't like any of what this disease is doing to Chris, but this saliva/ mucous build up in his throat is not nice at all. This only started a few days ago, Chris was a little bit sniffly, not a proper cold or anything though. He finds blowing his nose really hard now and of course his swallow is really weak too. He started to get a gurgling in his throat. One afternoon he called me and said he felt like he was going to be sick. I rushed to get a bowl. This gunk in his throat was triggering his gag reflex, and in turn throat spasms which makes it hard for him to breathe while all this is going on. I won't describe the details, but it wasn't a pleasant experience at all for Chris. Let's just say I never realised saliva/mucous could be so sticky! He didn't properly vomit thank goodness, but it was obvious what he was wretching out. Poor Chris, it was very distressing for him. This has happened to him a couple of times a day since.

I have had lots of advice from the MND family who have been through something similar, ideas ranged from portable suction, to cough assist machines and nebulisers. I rang Chris's palliative care nurse yesterday, she said all the suction etc can only be prescribed by the respiratory team, at least we are seeing them in Plymouth tomorrow. She did say it would be worth trying something to dry up the secretions in the mouth, though did say Chris may not get on with it and didn't have to continue with that if he didn't want to.

I think it is beginning to hit home to Chris that things are really progressing and that these bulbar symptoms are not good. These episodes tire him out. The regular feeds he has tend to make him wake for a pee in the night. He uses a bottle and I hear him struggle to sit of the edge of the bed, he is no longer able to get his legs back into bed now, so I lift them in for him. All that and the gagging is wearing him out.

From my point of view I am scared to leave Chris alone. I am glad my eldest daughter and her boyfriend live with us because between us and their work commitments, I able to go shopping etc and know that Chris is not alone. I am fearful the whole time that he is choking or gagging, I am always on edge.

Life is a constant readjustment, trying to find new ways of doing things that are no longer possible. What will it chuck at us next? It feels like this runaway train is heading downhill with the handbrake off, speeding faster towards derailment. 

We need a super hero to climb on board and pull back the brakes.