Pete has been amazing in his mood over the last few days, he has started helping again with the evening meal, getting plates etc. out, laying the table and taking what he can carry through to the sitting room and generally doing what he can to help. Then last night he washed and dried the dishes on his own whilst I wrote a couple of letters, and today he came out with us shopping at Lidl. This doesn't sound like much to anyone else but as he has done none of these things for several weeks it is a big step forward towards us getting back to normal (normal as in post-stroke that is). Today we also had a psychology session and Candy gave us a website to look at which shows how they raised the 'Verity' statue by Damien Hirst, in ilfracombe. Pete is very interested in this and got quite emotional watching the short video - as he knows about sculpting and casting this is his 'thing'! Candy is very pleased with the progress made and is now going to come in 2 weeks' time instead of weekly. I think it is important that she continues for a while as Pete needs to be able to talk about his feelings and emotions to someone. He has made all this progress on his own without the aid of antidepressants so I feel very proud of him.
Now for the rant - I will make it short! Yesterday Pete had an appointment at the Haemotology Clinic, and for the second time, we had to leave before seeing the doctor. This was solely due to the excessively long waiting times at this clinic. When we arrived the waiting time was 30 minutes which was acceptable although Pete started getting agitated after a while. Then, when we had been waiting 35 minutes and absolutely no-one had been called in to see the doctor, they upped the waiting time to 60 minutes AT LEAST! There were 3 people before us so we knew it was going to be longer than an hour and Pete started getting even more agitated, so, knowing he was heading towards a rage, I took the decision to leave. I have been told before they always run late as the doctors have meetings about patients whilst the clinic is running - ok, but schedule them into the appointment system please. They treat their patients with total dis-respect. Anyway, a strongly worded letter of complaint has been dispatched to them!!
Now, Adrian sent us the book 'The Mind's Eye' by Oliver Sacks who is a neurologist in America. One of the chapters is about a lady who had a severe right side stroke like Pete, and it tells of her recovery over a period of years. The main thing we can take from it is that we should never lose hope that there may be some improvement in the level of aphasia. However, again we come to the fact that Pete seems more aphasic than anyone else we have read about. This lady, and it seems everyone else, is usually left with at least a few words although they will probably be used in the wrong context at first or may not be recognisable for a while - Pete has no words at all other than 'yes'. Also they made a book of key words for this lady which became her 'bible' when communicating - she was able to use it very well with no problems. We have started a book like this for Pete but I have to tell him to use it, he has only once or twice picked it up on his own. He can't seem to connect to use it to help communicate and also it can't be too involved as then he just gets confused with it. At the moment it is quite short and basic, but we hope to build on it over time. Then again, we come across the level of therapy - she had lots and was able to pay for more. We can't find anyone who specialises in this - even if we could afford it! So that's no good, and again she has loads of people around her all the time which obviously helps - as it is usually just myself and Pete here 24/7, with the best will in the world, I cannot give that level of attention. What I would really wish for is for some research group somewhere to pick Pete's name out of a hat and see if they could help, eg stem cell research, or any other trial going on. But, alas, that probably will never happen - the only time his name was randomly picked was for a tax inspection when self-assessment began several years ago!!!!
My sister is coming tomorrow and is staying overnight so that will be a bit of light relief which I am really looking forward to.
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