I have reached another milestone! It is now 200 days since I was diagnosed :D. Well actually it was yesterday, today is D+201. Unfortunately I’m a bit behind with my writing as yesterday I was struggling to catch up with an account of my experiences at the previous day’s MND conference. Writing is starting to consume quite a bit of my time but that’s only partly due to disease progression. The rest is down to being just plain fastidious and never happy with what I write so I am constantly editing and shaping it – that or I am just plain out of words and seeking inspiration! So here we are again and in a sense this is where it all started with my blog back at D+100 in February. Recently there was also a 6 month milestone but that was a special case. It is my intention to mark my progress with the ‘100 days’ series and see how far we can take it. So today we’ll have a 100 day stock take and I’ll round it off with some of the recent things that have occurred.

Those of you kind enough to have been following this blog from the beginning will know that the last 100 days have seen some quite significant changes in my life. I have given up driving as my arms have become so weak that I simply cannot turn the steering wheel (and by now probably the ignition key too). I have stopped work too, in part because of the growing disability and collapsing energy levels, but I choose to look at it as ‘early retirement’ – to make up for the one I’ll probably miss!

I’ve been slowly trying to come to terms with the loss of these two corner stones of adult life – and it’s not easy at times. I certainly miss the social interaction that working with a good group of people can bring. It can feel a bit isolated at times… Life without the car is also taking some adjustment. I really miss not being able to just jump in and drive off for the day with a coolbox and my camera. Now I have to plan ahead with any journeys I make and am at the mercy of public transport schedules and with fading strength I am limited in how much I can carry with me.

To combat these losses I have tried to constantly keep my mind and body active. I think the worst thing you can do is just give up and sit in an armchair brooding because all that will achieve is to waste the precious time that is left. So my mind is kept stimulated by working at my computer where a whole range of options are open to me, by reading (both fiction and non-fiction), and of course by writing. And whenever possible I’m out walking around the housing estate and local countryside getting some fresh air and exercise and just hoping that it will keep my muscle tissue as healthy as possible. The upshot of keeping myself totally absorbed in as many things as I can is that I don’t have time to dwell on my situation. And that’s one of the ways I fight this disease.

But there is no doubt that the disease is slowly creeping forward. I can no longer raise my left arm at all when sitting down and rely on my right arm to pick it up. And even when I am standing up I am unable to bend my left arm at the elbow, instead all that happens if I try is that my left shoulder rises up. The elbow joint is still very flexible as I exercise it everyday, but unfortunately the nerve cells that gave me the ability to move that arm in certain ways have died (although I can still swing the arm and use momentum). It’s just a dead weight half the time but only from the point of being unable to move it, not from the point of lack of feeling because MND does not really affect the senses. So I depend more and more on my right arm to perform everyday tasks but the big worry for me now is that arm too is slowly becoming harder to control. It can be quite a frightening experience at times if I overwork them and both arms become tired and sluggish. All I can do is take some small comfort in the fact that it does not appear to be too aggressive. From time to time I hear stories of people who pass away and yet were only diagnosed six or seven months earlier. So I have something to be grateful for I guess. Also (and trying to be a bit optimistic) I’ve learnt from a new book on the disease I’ve been reading (which I’ve just realised is written by Dr Talbot who I was talking to yesterday!) that it is believed that the rate of disease progression remains fairly stable throughout the illness. If that’s true then my current rate of progression is a good indicator of how quickly the disease will spread in my own case. I think this is something I’ll have to discuss with my Neurologist when I see him next.

I sometimes feel that all my abilities are gradually being peeled away like the layers of an onion and I wonder how much strength, how much movement and how much functionality I can loose before quality of life and my independence are significantly compromised. At least my weight is fairly stable at the moment although tiredness is a problem if I start to physically exert myself by using my arms too much, so general housework and looking after the garden are really becoming quite a challenge.

I’m still having monthly appointments with my GP and I’ve just had my first three-monthly liver function blood test which is required to monitor the effects that Riluzole may be having. I certainly haven’t been aware of any side effects in all the time I’ve been on it so I feel fairly confident of the results. After two more of these three-monthly tests I’ll be moving to a yearly test.

I’ve had a couple of specialist visits recently. The first was from a couple of folks from the Oxford Centre of Enablement who had been asked by my Adult Services contact to come and give me a couple of assessments; one for a mobile arm support (MAS) and another for using the computer (called an Assistive Technology Assessment). The mobile arm support is not mobile in the sense of being permanently attached to your arm but in the sense that you can detach it from one table and move it to another which could prove useful if you go out to eat although after seeing what looked like something that had come from the Wallace and Gromit school of engineering, perhaps not. It’s just too cumbersome although if you went to visit family then perhaps it would be okay – but not in a restaurant. Well after having this contraption bolted to the dining table, the counterbalance adjusted, and my arm waving around in the support cradle like a cork in the water as I tried to simulate eating a meal or using a keyboard (all of which felt really unnatural) it was decided that it was a bit premature for me to have a MAS. Apparently I’ve still got a lot more movement in my arms then they normally see so that is on hold until things worsen. The Assistive Technology Assessment didn’t prove too useful either as I had already come up with some solutions of my own that would enable me to continue to use a computer (at least in the short term). What I was looking for were ideas that would enable me to maintain a high level of productivity i.e. speed, but I saw nothing that would improve on what I was already using. I did see a lot of clever gadgets but they would all be very slow to use and take some getting used to. I suppose there will come a time when even having the ability to use a computer very slowly will be infinitely more preferable then not at all so I will no doubt have to revisit this again later on (much later please). I’ll document my own short term solutions to computer access in an upcoming blog entry next month.

The most recent visit I’ve had has been from a doctor who is a consultant in palliative care for the St Michael’s Hospice. She was made aware of my situation by my GP at one of the regular meetings they have at the surgery. The purpose of this visit was really just to meet up and get to know each other, have a chat about how I am coping, and for her to talk a little about the range of services and help that the hospice can provide which can be anything from a short stay at the hospice (symptom control), a day visit (day care) or a home visit by one of the community nurses. At the moment though she felt (as I do) that I already have an adequate care network in place and there was nothing extra that she could offer but of course that won’t always be the case and one day I may need their services if things get seriously bad. It’s certainly good to know that they are there for when I need them and that they are local too. She plans to contact me at regular monthly intervals so she can monitor my progress. I do feel quite lucky really in that I have a good care network in place without me having to do much but at the same time I guess that the real test will be how effective the care system is when I truly have need of physical help. At the moment it is mostly confined to monthly chats.

I’ve pretty much recovered now from my little bike accident; the bruises have almost faded away and the grazing too. At least one part of my body’s ability to repair itself works – if only the same were true for motor neurones. Unfortunately you only get the one set.

As for my mental wellbeing, well I still feel okay really. I can still have a laugh and a joke and not feel like I’m drowning in a sea of depression, but I am becoming consciously aware of the dark, brooding storm clouds that are starting to gather on the horizon. I need one of those giant land-based windmills to blow them away :-).


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