5 October 2012
I woke up this morning feeling fine. I had absorbed the additional hours sleep with no trouble at all. Alice popped in and around 5.00 a.m. to tell me that she had now taken over and having sorted out my various limbs, left me to my own devices, with the lifeline alarm system operating with the “Trifaids”.
With this new regime Dr Michael Davies was anxious that I should take at least two hours in the morning and the same in the afternoon on the respirator. I had certainly noticed yesterday a strengthening of my voice and less laboured breathing when the respirator was removed.
The good Dr Michael leaves today, en route for Melbourne with the offer of a quick visit before Christmas, if necessary. I now have to learn to pace myself and little better than before and make use of the nippy to stabilise my breathing. As to the prospect of an early demise due to respiratory failure, the good Dr Michael said,’ we are all die and I may go before you’. Unlikely, but true!
I must learn to take things a little easier as my blood pressure has been exceedingly high. Apart from that I can only promise to be a ‘good boy’ and see if I can hang onto life a little longer particularly aiming for my targets of Christmas and then our golden Wedding stop you would
With the good Dr Michael sitting with me and my daily visits from my key worker from Ross nursing – Craig and colleagues – we got through the day relatively without incidents. ‘my lovely’ was out (cat hunting’) , and Ross Nursing was suffering with a chronic form of staff’s short bursts as they are not allowed to visit patients if they themselves are feeling off colour or have a cold,
I find that if I do not try to speak to often then I should be able to keep the mask working, if not then we all know now what the consequences are likely to be. In the meantime as I sit concocting my blog, the good Dr Michael wings his way to Australia via Singapore. Will I ever see him again. In his characteristic generosity he has offered to pop back, probably in late November, a typically generous gesture from an old friend I am sure that the local GPs and even the hospital consultants, find Michael’s short notes of my daily condition, extremely useful.
One of my greatest fears, ignoring the possibility that I would not be able to speak sufficiently clearly that I would be able to continue this blog to the end. First of all I can say that I am able to dictate, with my Dragon programme,. We are still waiting to try and see if it is possible to dictate with just the nose respirator. I believe this is something I will have to try to get to grips with, I will keep my readers aware. The good Dr Michael has informed me that I hang onto life tenuously. Any of us could go at any time, the attitude from my point of view is to take things quietly. Apart from anything else, the very short spaces of high blood pressure, do not help the cause. It means a little more physical movement where I am able the new routine will take some getting to know but I am sure that once my team at got the hang of it it will go as smoothly as before. I can see that I will have to conserve what little energy I have and distribute that between dictating to the blog; speaking to my friends and dealing with 20-30 daily emails
I would just like to say what a provilege it is to have read Mark Cato’s diary recording his experiences since the onset of motor neurone. My husband, Martyn, has recently been diagnosed with motor neurone and I will read Mark’s blogs again as a source of information and inspiration to help us both. I do, however, not only wish to thank Mark for his marvellous writing skill and tenacity ( I trust his spirit will receive this message! )but also his wife Alice and family whose love,kindness and support will no doubt have made the continuity of diary input possible.
Thank you again. God bless