Sunday, February 7th 2010

Swallow

I’ve been experiencing some first signs of problems with my swallow reflex. I first noticed it early this week when I was having my evening meal. Food was building up at the back of my throat instead of sliding down and it was taking a real conscious effort to shift it. In fact it got to the point where I was taking a sip of water after every mouthful of food just to ensure that the food slid down my throat. With my weakened respiratory system I couldn’t take the chance that the food would block my airways as I don’t have enough lung function to effectively cough up the food. It became quite an effort to plough through the meal and in fact I ended up abandoning it about halfway through. A real pity because it was a delicious chicken breast, crispy roast potatoes, vegetables and gravy. Ordinarily I would devour something like that in no time. The problem has persisted to varying degrees throughout the week although it seems to be worse in the evening, presumably because by this time the muscles are getting tired. I’ve had cooked breakfasts some mornings this week and despite eating such things as fried bread, fried egg and crispy bacon, I have not encountered any problems. Certain types of foods, textures or perhaps just times of the day are causing me problems. All of this comes as a bit of a surprise as until now I’ve never had a single problem swallowing although of course as I’ve previously mentioned I have been battling with a reduced appetite for some time, but it never actually affected my ability to swallow food. I’m going to have to start taking a careful look at what I eat.

Standing up

At the start of last month I was doubtful if I would even make it through to the end of the month on my feet. Well I did and am still doing so albeit in a rather wobbly and uncertain kind of way. The problem is actually in the standing up. For weeks now I’ve had to make a concerted effort whenever I want to stand up either from the bed, a chair, or the toilet. In the process of trying to stand there is always that moment of uncertainty; will I make it, will I fall backwards, or will I fall forward onto the floor? Well, fingers crossed I’ve not yet fallen forwards but I have on several occasions now fallen back and not been able to stand up. Over the past week I have increasingly needed to depend on my carers to help haul me up either from my study chair or the toilet until it has got to the point where I am now virtually unable to do it unassisted. Once I am in a standing position I am okay for a few minutes as I still have some load-bearing ability in my legs. But those upper leg muscles just don’t have enough strength in them anymore to lift my weight. Consequently independent mobility is now seriously under threat and just about the only times I can move around are when there is somebody here to assist.

Lost grip

Despite the physiotherapy my hands are becoming harder to clench. The passive movements that are performed on my fingers help keep the muscle tissue supple but the problem of course is that the signals to instruct the muscles to move just aren’t getting through. A couple of weeks ago I started experiencing problems even trying to hold onto toilet tissue long enough to actually use it! As the days went by my fingers became ever more sluggish to respond until it got to the point earlier this week when I simply had to accept the fact that even wiping my own backside was no longer possible. So once again MND has stripped away part of my dignity as I’ve now had to embarrassingly hand this task over to my carers who of course just see it as a routine part of their everyday work lives. Just between you and me I really hate this disease.

* * *

The disease is becoming far more global in its nature and I feel like I’m being attacked on multiple fronts as the various muscular systems in the body start to crash. In one week I’ve seen the first signs of problems with actually eating food, seeing my mobility reduced down even further, and having to give up that most personal of hygiene. No wonder I’ve been feeling a bit down this week. Just as well then that with all the things that are happening to me just lately that I’m now on the extended care package. Having someone else in the house for most of my waking hours is very reassuring now that I am at this stage of the disease.

Mark

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