I realise I have a lot of catching up to do

as I have rather neglected my blog for various reasons.  I will not go into all of them as they will begin to sound like a bunch of excuses but the main one I suppose is that I was unable to get into my blog because I had forgotten my username or my password or something techie:  But that has now all been resolved – obviously, with the help of the younger generation!

Another reason why, particularly as time has progressed, I have a lot more to say and I am having to think quite carefully about how I prioritise, because I have a lot of big decisions to make.  Those decisions aren’t only down to me so there is another reason for being slow in adding another post;  but really that is just an excuse.  In the last post before Christmas, I wrote that I had just had another MRI and then, I think, just after Christmas, in my review on the year, I explained that there was a delay in getting the results of the scan because there weren’t any radiologists in the hospital to interpret it.  So I can now report on that and, at the same time, practice dictating into my iPhone in order to then upload my writings on to my blog.  As I muddle my way along you will have to be patient with me as I present my thoughts one by one.  

Back to the MRI:  after much chasing and trying to be patient I received a telephone call from my GP who said “I’m pleased to see you have no new lesions“,  to which I could only reply, “That’s the last thing I wanted to hear”.  As you may remember in order to receive Ocrelizumab (the only drug on offer to PPMS patients), I need to have at least two new lesions. The fact I have deteriorated over the past few months – in fact I’ve just carried on deteriorating since my diagnosis on the 12th of December 2017 – is, it seems, of no importance.  New lesions are, apparently, what count.  Through persistence, I have managed to get another appointment with Dr Harikrishnan and I hope he may be able to help me forward my interest in stem cell treatment.

I went to a talk in the summer of 2018 given by Dr H where, it seemed to me, he was opposed to such treatment as it was unproven at that date. I am now, through another route, trying to get an appointment with a Dr Kazmi who is a consultant haematologist and specialises in stem cell transplantation for MS.

I can still walk 20 yards unaided, in fact I can walk further than that (but don’t make me wobble) which is one of the criteria by which you are judged as a suitable recipient of Ocrelizumab.  But I have now reached the point where I am prepared to admit that it would be an awful lot easier not just for me, but whoever is with me, if I wasn’t trying to do it on my own 2 feet but with the help of a wheelchair.  What I am trying to say is that I have deteriorated to the point where my leg is so weak, and before my hands are completely redundant it would be quite nice if we could just slow down the rate at which I am becoming useless.

That leads me to my next conundrum;  and I would quite like to try and explain my thinking and rationale behind the choices I have and those I actually make, or should be making, to make life more pleasurable not only for me but those who live or spend time with me.  And whilst all these things are going on, I/we are making decisions about what happens in the new bathroom which is being fitted out for my needs now, as well as when I am completely immobile or wheelchair-bound.  The Occupational Therapists I was put in touch with to help with with design were unable to see me for four months!!  Upon reading the couple of sheets of A4 I was sent, I could work it out on my own.  Deciding upon which bath, or where to put it, is quite easy, as was thinking about hoists and handles and grab rails and other practicalities. However choosing a wheelchair is a bit like trying to choose a car when you know absolutely nothing about what use it will be put to or exactly what is required of it, and it is a choice or subject I never thought I would have to be thinking about.  And is unpleasurable to say the least.  Although I realise there are some people who would say there is no pleasure in buying a car either.

I think I will continue this tomorrow.  I am tired and I will take one conundrum at a time when I try and explain my thoughts and decisions.

To remind me, due to a hopeless memory, I will next write about wheelchairs………….