Here we go again. Another 100 days have passed and I have reached the next milestone! Phew! :-). It is now 300 days since I was diagnosed :D. As is the format I’ve chosen I shall recap on the previous 100 days first and finish up on some of the more recent news that didn’t fit into the flow of the last five blog entries.

Because of the nature of the disease I suspect that every 100 days will be filled with its own highs and lows, and that’s certainly true of these past few months. I’ve sort of come to terms now with being out of work and have started to focus my energies on some of the things that I never seemed to have time for. I’m also trying to prioritise things to match my dwindling abilities so that the things that require more upper or lower limb movement are completed first. Some of these are forward planning and solely for myself which I hope to reap the rewards of further down the line, whilst others are things I’ll bequeath when my time is through. I’ll write about these more in future blog entries. But the important point I’ve realised is in keeping yourself busy and to not allow your mind to dwell on negative thoughts, although I’m not entirely immune from that of course. For me the days simply fly by and it’s hard to believe that we are heading into autumn already.

Back in late June I had my second lung function test, my first being last October and a month before diagnosis. As weakening of the breathing muscles is a key factor in determining life expectancy, it is understandable that the doctors would want to keep a close eye on this and so regular monitoring is performed. In fact I have another appointment already scheduled for around November time. The test itself is basically a set of three inhale/exhales from which they take the best set of readings. The whole thing is over in a matter of minutes compared with the almost 1 hour of travel time by bus to the hospital (it used to take about 15 minutes by car). Of course the trouble with having repeat tests is the fear that the new results will not be as good as the previous set. When I asked the nurse/technician if my results looked okay she replied that they were the best set of results she’d seen all day. Of course I was the only person she’d seen all day, hehe… In truth they won’t discuss the details of the test; that is left to the Consultant Neurologist who I saw a couple of weeks later.

My four-monthly appointment with the Neurologist in early July was rather uneventful, thank goodness. He reviewed the findings of the lung function test and commented that although performance had deteriorated it was still impressive that I could shift over 4 litres of air through my lungs, particularly with all the weakness around my shoulders. He also reviewed all the blood test results I’d been having and commented that I seemed to have a high tolerance for Riluzole. We then talked about how the disease had so far been progressing in me and how it had remained predominantly in the upper limbs. What cheered me up a little was being told that the disease pattern which I was exhibiting was one which they (MND specialists) recognised (through historical observation) as progressing at a slower rate. Indeed I was told that in cases similar to my own the disease had been shown to stay in one area of the body for some time before moving on. This sort of rings true with what I’d been experiencing. My weight loss had plateaued during the spring and for most of the summer and although upper body strength continued to diminish it seemed to be contained within that area. So good news all round. Oh, one other thing. Just before leaving I took the opportunity to ask him about the Italian Lithium clinical trial that I had brought to his attention the last time we met. His answer was that he had discussed it with colleagues and that it was felt that the way in which the trial had been conducted was not good science. There was also a reluctance to proscribe something that can have undesirable side affects. I guess the answer came as little surprise as I’d discovered from reading about other people who had begun a course of treatment using both Lithium and Riluzole that there had not been any demonstrable improvement. In fact some people had come off the lithium because of side affects. It’s been rather quiet on the lithium front of late.

Having just said how tolerant I seem to be regarding Riluzole I’m now going to contradict myself. At the most recent monthly visit with my GP last month we reviewed the results of the latest 3-monthly liver function test. Two of the three tests performed on the blood sample came back okay but the Bilirubin test came back higher then expected. Elevated levels of Bilirubin are a consequence of taking Riluzole but you don’t want them to be too high. I’ve noticed lately that bruises I get from having needles stuck in me or from accidents are taking longer to heal. The skin stays yellow far longer then I can ever recall. I suspect that it may be due to the higher then normal levels of Bilirubin in my system. I’ll have to ask my GP. I am scheduled for a re-test next week. This is not the first time I’ve had elevated Bilirubin levels. It happened early in the year but a re-test came back normal so I’m hoping the same will be true this time and that it was just a blip on the radar. Fingers crossed. The blood test is scheduled to coincide with the next visit to my doctor later the same week. So when I see my doctor the first thing I’ll ask her is “how’s Billy?” “Who’s Billy?” she’ll say. “You know, that guy you went to medical school with – Billy Rhubin” :D.

I’ve sold my car! Well actually I sold it back at the beginning of July. Initially I had tried selling it a few weeks after I stopped driving but got no response. For a while I just lost interest and as the weeks rolled by the car started to become a permanent fixture of the driveway. One day when I was trying to wash it (no easy thing when even the act of lifting a sponge soaked in water is a struggle) reality kicked in and I thought ‘why am I still doing this when I’ll never be able to drive it again?’ I guess it’s sometimes hard to let go of a part of your life that has been with you for so long. And that’s what MND is all about…a constant series of losses and how we deal with them. Shortly afterwards I re-advertised the car and sold it on the day the advert expired! I felt a bit upset seeing my car pull away from the house with it’s new owner – silly really as it’s only a piece of metal, glass and plastic. But it is what it represents more then anything…closure.

Being able to keep in touch with family and friends, to participate in social events, and to not feel isolated and alone is an important part of maintaining your will to survive when sometimes all else seems to be heading in a downwards spiral. Over the summer months I’ve been fortunate to have friends call round for coffee afternoons, take me out for launch and to allow me at least the illusion of a normal life by taking me out for the day so that I can take a few pictures. I am truly grateful for all the kindness that has been shown to me so I would like to offer my special thanks to Robin, Susie, Carry and Kim. I really do appreciate having the extra pair(s) of hands around to help me when I need it the most and I thank you all for your patience. Although there is nothing to stop me from jumping on a train and visiting places by myself I would struggle a lot now. I really need a personal assistant ;-).

I miss cycling a lot. On many occasions when we’ve had lovely sunny days I’ve found myself wishing so hard that I could get back in the saddle and go cycling down the country lanes enjoying the fresh air and to just feel as free as a bird. But taking one bad fall off the bike was enough for me. I now make do with walking but feel rather restricted in how far I can go. I’ve not attempted any more 12 mile treks but can still manage the 6 mile strolls without too much effort.

It was my birthday late last month and an opportunity for some family to get together for an enjoyable meal out :-). I’ve included a photo from my birthday and will upload some more at a later stage. My thanks go to those who sent cards and well-wishes. For those who didn’t – see me after class :D.

Opening a birthday card

Those storm clouds gathering on the horizon that I mentioned a hundred days ago are now hovering over my head. After months of being able to stabilise my weight I have recently started to loose weight again – not huge amounts but gradually. And this time it appears to be coming off my upper legs. In the days when I would do a lot of cycling and walking my upper leg muscles would be quite firm but now they are starting to become softer and their profile is showing signs of change. My legs do not feel quite so strong anymore although as I’ve already remarked I am still quite able to go for long walks and can lift myself up from a crouching position using just my legs. Nevertheless I believe that the muscles have started to atrophy and all I can hope is that it is a very slow progression. I’ve tried so hard to maintain my independence with weakened upper limbs but am a little worried how I’ll manage when I start to loose functionality in my legs. Scary stuff.

Before I sign off I’ll leave with a ray of hope and what promises to be an interesting new development in the fight against MND. I think I may have mentioned before that I have a Google alert in place to notify me of any news stories breaking around the globe. A day never seems to pass without at least one story somewhere in the world coming to my attention. Most of the time it is just local online newspapers covering stories of charity events in aid of the disease, obituaries, or so and so knew someone who had the disease or is living with it. Now and again though it is something far more interesting to those of us battling the disease, and at the end of July one such news story broke and for the next few days I was bombarded with Google notifications as the announcement ricocheted around the world and the various news and scientific journals published their articles. Now I don’t usually comment on such stories here because the focus of this blog is just to record my own personal experiences of living with a life-limiting and little understood disease. There are plenty of other sites out there far better suited for scientific discussion and I’m hardly qualified anyway. There are already far too many amateur doctors on the internet. But I did just want to raise awareness of the announcement to all my family and friends because even the MND Association reported it as a huge advance.

For the fist time America scientists were able to take ordinary skin cells from people living with MND and transform them into motor neurone nerve cells. This will pave the way for developing new drugs that can be tested on human motor neurone nerve cells in the laboratory. Up until now animal models were I believe the only way to initially test new drug designs. Of course it will still be years away before anyone starts to see real benefits but nevertheless it sounds like a large piece of the jigsaw puzzle has just been flipped over. To a person like me being able to reprogram skin cells seems like the stuff of science fiction. We truly live in an age of wonders. For anyone interested I’ve included a link to the news story and the MND Association’s response at the bottom of this blog entry.


Links to research breakthrough




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