We went to the Morriston Hospital today for an appointment with a Neurology consultant and a prearranged MRI. Or so we thought.
Waste of time and effort.
No MRI. Incomplete notes and no copies of the notes and letters from Professor Kerr. 8 weeks minimum wait for the MRI and a month after that before we see any results.
Bunch of incompetent jobsworths.
Wednesday, 20 November 2013
Tuesday, 12 November 2013
Back to where we were
Ok, the Rufinamide will be off Stevie's drugs in 4 weeks and we are getting back to where we were some 18 months or more ago, but not in a good way - see the next paragraph. It seems that there may be another drug option, or maybe not. We have a Neurology appointment next week, hopefully for another MRI to see what can be seen in his bonce. The last one was some 3 years ago.
Stevie's collapses are now pretty much once or twice a day and he is consequently getting hurt again as well. Some good bruises to his back at the moment.
He is also loosing ground cognitively again I think, but others disagree! He repeats himself constantly within a minute or so about everything, starts to say something and cannot remember what he is going to say. Things he knew what to do a while ago he now cannot remember how to do.
It is heartbreaking. And there is no end in sight!
However, on the good side there is a Rugby Game with the Gladiators RFC coming up against Worcester RFC on the 7th Dec on the Swansea RFC ground at St Helens and a tour to Belfast in February. Always assuming of course my body can manage it. Stephen is fine, my body is the problem!!
We shall see what happens next!!
Stevie's collapses are now pretty much once or twice a day and he is consequently getting hurt again as well. Some good bruises to his back at the moment.
He is also loosing ground cognitively again I think, but others disagree! He repeats himself constantly within a minute or so about everything, starts to say something and cannot remember what he is going to say. Things he knew what to do a while ago he now cannot remember how to do.
It is heartbreaking. And there is no end in sight!
However, on the good side there is a Rugby Game with the Gladiators RFC coming up against Worcester RFC on the 7th Dec on the Swansea RFC ground at St Helens and a tour to Belfast in February. Always assuming of course my body can manage it. Stephen is fine, my body is the problem!!
We shall see what happens next!!
Wednesday, 6 November 2013
And another thing...............
Another day etc!!
Stephen and Jan are both at work and I am here at home.
I am full of cold and grumpy...........................
I have been diagnosed with an underactive thyroid...................
Drugs for the rest of my life................................
I know this sounds bad but I have avoided drugs apart from colds and pain relief for the last 20+ years.............................
SPIT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Stephen and Jan are both at work and I am here at home.
I am full of cold and grumpy...........................
I have been diagnosed with an underactive thyroid...................
Drugs for the rest of my life................................
I know this sounds bad but I have avoided drugs apart from colds and pain relief for the last 20+ years.............................
SPIT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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