The year is racing by! It’s springtime, we are approaching the end of April already, and another 100 day milestone arrives. I’ve now reached the 900th day since my diagnosis! smile_party In keeping with other recent D+ posts I’ll mark the occasion by taking a summarised look at my declining health since mid-January.

The last 100 days, probably more than any other, have had a significant and profound impact on my day-to-day quality of life. I have had to come to terms with living in a very restrictive environment which I have not been able to leave since the beginning of the year. This alone is hard on someone who was used to going walking and cycling during the evenings and weekends and driving the rest of the time. This year it really does feel like my world has contracted down to a tiny sphere consisting of just three rooms. With time a limited and precious commodity that I hate to see go to waste, I feel so very frustrated at times that I cannot get out, particularly now that springtime is here. There has been talk for some time now about having some ceiling tracking fitted at the top and bottom of the stairs that would enable me to be safely transferred between stairlift and wheelchair. Unfortunately things have stalled due to lack of funding and a reluctance now that my long-term situation looks more certain. My only hope for getting downstairs and out of the house in the foreseeable future is with the help of two carers instead of the usual one.

It can be a frightening thing experiencing the last of your strength ebb away and as the weeks passed my chances of being able to get off the bed at night unassisted to visit the bathroom diminished as my torso strength faded. The (reluctant) decision to use conveens was at first a way of eliminating the chance of having a serious fall in the night, but eventually became a necessity (unless I wished to have a stranger living in the house), as I am no longer able to leave the bed without help. It’s funny, in a strange way, how disease forces us to accept and adapt to change. There was a time much earlier on when this was first suggested, that I was completely against the idea, but now I just seem to have accepted (or at least resigned myself) that it is all part and parcel of living alone with MND.

This year has also seen me having to give up the last of my personal care. I tried to hang on to the last of my dignity for as long as I could but in the end the disease (of course) won out. It took a while to relax and feel comfortable with somebody else taking care of life’s most intimate and personal daily chores. At first I felt more than a little embarrassed that my body would betray me to this level denying me even this basic dignity but now it has just become part of my daily routine. I try not to think about it and instead concentrate on the day ahead.

My legs of course continue to weaken but amazingly I am still able to bear my own weight even if it is only for a few minutes. The real problem is standing up and for that I need the assistance of my carers otherwise I end up staying where I’m put. But once I am standing up and have my balance I can just about shuffle between the three rooms although there have been a couple of occasions now when it feels like my legs are just about to give way and I have to lean against the wall whilst my carer quickly gets the glide about chair so that I can sit in it and be pushed the rest of the way. I also have to be careful I don’t bump against anything whilst walking otherwise the impact will ricochet through my body upsetting my balance and threatening to topple me over, and it wouldn’t take much to do that these days. Nevertheless I continue to be surprised that I am still able to stand up at all. Back in January I thought I was on my last legs – literally!

My hands are for decoration only these days! The mere thought of wrapping my fingers around a pen, let alone writing my name is laughable. Making a fist of my hand is something I can no longer do myself. I have physiotherapy on my hands daily but it has become quite painful trying to fold the fingers at the joints. Strangely, I seem to fair better when I’m having a bath and my hands are submerged in water, I then seem to be able to flex the fingers more than I can in air. Perhaps my hands are turning into flippers! smile_regular

My neck muscles have weakened further. I lose track of the amount of times I have to say ‘head up’ each day as a reminder to my carers to lift my head up every time I go to sit on the bed, toilet, bath lift, perching stool etc. These days I can barely lift my head an inch or two above the pillow when I’m in bed and only then when it is slightly elevated. I wear my neck support for quite a few hours each day now.

The one surprise I’ve had to come to terms with this year has been a slowdown in my swallowing reflex. I’d been seeing a reduction in my appetite for some time and had put it down to reduced efficiency in my breathing system, but was still nonetheless surprised when I started to experience difficulty in eating certain kinds of food. It can be a bit distressing to find that food is building up at the back of your throat and not sliding down naturally but instead threatening to block off your breathing. I had visions that my days of eating normal food were drawing to a close and that I would be forced to eat everything in a semi-liquid form. But I’m pleased to say (he says touching the wood of his desk) that those early symptoms have so far not progressed any further and although it’s true to say that certain types of food do indeed present problems I have yet to find anything that is a complete no-no. My carers, bless them, have been coming up with some imaginative ways of allowing me to continue to eat the things that I enjoy, just in a different form.

My care package is about as stable as it can be at the moment which is an achievement in its own right I suppose, considering all the problems I’ve had in the past. The funny thing is it seems to have improved immeasurably since we significantly increased the hours. Now that I am on block hours it seems to suit everyone; the carers seem to prefer it as they are not being sent here, there and everywhere every hour, whilst I prefer it as I have more consistency in the people who are supporting me. Only the recent departure of Francesca as one of my main and regular carers has marred things.

And hanging over me like a dark cloud these past few months has been the uncertain outcome of my planning application and how long and drawn out an affair it turned out to be. What a relief it was when I was finally given the go-ahead! Now things are starting to move forward and I’m just hoping that I’ll be downstairs and able to make use of the garden this summer.

Fortunately the life critical stuff seems fairly stable at the moment. At least I’m not consciously aware of any further degradation in my breathing and for that I am very grateful. I do have to pause between sentences though when speaking and I cannot shout as loud as I used to. Also I can’t even sing along to the tunes on the radio any more, although some might say that’s no bad thing! smile_regular

So there we are, quite a few changes this time, but overall thanks to all the help and support I get I’ve been able to manage.


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