24 Jul 2008

Post 58: A Private doctors opinion

In many ways I wish this could be an account of a positive epiphany that inspired other stroke survivors and uplifted all who read it – sadly it's not. It's the gritty tale of a grim uphill struggle with occasional flashes of hope, happiness or humour. Hope, when things tangibly seem to get better, Getting out of hospital for example. Happiness, very rarely I'm afraid, but when I've been shown unatural kindness or when I've felt love from friends or family. I was happy when Tash was here but I felt love (and therefore happiness) for the latest little addition to the Pardey zoo, a kitten called pickle (god I sound soft) that I got on Saturday. I (thus far) have been very lucky, she uses her sandbox, loves being handled and doesn't appear too phased by the wheelchair. I know this feeling is only transient because she's only a kitten, there simply is no substitute for the right girl, I may go on about this but it's the worst thing about this, the inability to get out there. It's definitely the thing I miss most which is probably why I go on about it, sorry. Certainly since my stroke I've developed a sort of 'Stockholm Syndrome' where you really start to care about the people that care for you, now with me it's pure coincidence that the people I've developed an affinity for happen to be the prettier girls, what a surprise! I haven't written a post like this for a while but was inspired by a visit from a particularly beautiful (sadly happily engaged) friend of mine yesterday. It's very Joan Rivers of me to talk like this. Changing the subject, I would like to bring up a line of the genius poem written by a very talented (clearly) friend of mine (poem reproduced in post 11) about how intangible progress stinks, all I can do is think – hence the reason for all this rubbish..Tangible progress would be walking, using my left hand normally, Feeling something in my left hand, feeling less shattered, moving on in my joke of a lovelife. The other day I went to see yet another doctor about my fatigue and as usual I was expecting them to be able to do sweet FA, I wasn't disappointed but he did write my GP a very informative letter which I thought was worth reproducing because it summarises things rather well:
'Thank you very much for asking me to this most unfortunate young man who had a cerebral haemorrhage due to a ruptured AVM and resulting among other things in a left hemiparesis. This was in 2005.

He is now living on his own, but with a good deal of support. The house has been adapted for his purposes and he has a carer to help him get up in the morning. I understand that he has two South Africans ladies living with him with subsidised rent on condition they provide some help in the evening and cook an evening meal. This situation seems to work out fairly well as it does enable him to maintain some independence.

His symptom as you say is that of severe fatigue. He tells me he is tired all the time and everything is an effort. He does not sleep during the day, but does sleep reasonably well at night, although he finds it difficult to get comfortable. He does not take a sleeping tablet.

He has very little movement down the left side and has poor vision and some dysarthria, no doubt due to the cerebella involvement. He gets clonus of his left calf from time to time which is why he is taking Dantrolene. He is unable to stand because of poor balance, but is able to get himself in and out of bed. He has diplopia from time to time.

He is able to swallow most of the time, but does occasionally choke. Inevitably he has gained weight. The fatigue is a continuing problem and it does seem to be interfering with his rehabilitation as he is too tired to have his physiotherapy. He feels pretty rotten as well.

Before his stroke he was an active young man playing a good deal of sport. He had a promising career having done his degree at Oxford and he was working at the time in the head office of John Lewis. He used to smoke and drink a good deal, but he did stop smoking before his stroke.

His blood pressure was satisfactory at 110/70. He does have fairly gross nystagmus. He has of course tried a number of drugs in the past without any great success.

I am just running through one or two further blood tests, but anticipate they will be normal and have told Dominic that. I believe that one of the problems is that he has a very good mind which he is not using at present and he must inevitably get a bit bored and frustrated. Although he uses his computer a good deal and writes a daily blog that is not quite the same thing as getting stuck into some serious study or ongoing project. He told me he was too tired to be doing anything very much and that his eyesight and speech interfered with serious study, but I do think this is an area which needs to be explored further, perhaps with advice from the relevant department at The Royal Hospital for Neuro-disability. He needs to have a well structured day. He already gets up at the same time each day, but I think that he will need one or two formal rest periods during the day when he actually goes and lies on his bed. He needs to come off his computer before he gets tired and vary his activities during the day to avoid boredom.

I rather doubt the medication will help. Dominic is not especially keen on taking further drugs as he has already had quite a number. I note that when he was on Citalopram it helped him a bit and I wonder whether it might be worth a one month trial of Escitalopram as this seems to have more certain bio-availability. If there is no benefit after one month then there would be no point in persevering.

More controversially would be the use of Methyl Phenidate (Ritalin) or Modafmil. Dominic is pretty well aware of drugs which might be used in his condition and was certainly not keen on taking Ritalin, because he said it could push up his blood pressure and might cause a further stroke. In fact I think that would be a minimal risk especially as he could monitor his own blood pressure at home, but I told Dominic that really he would be the one to make the final decision about using one of these drugs and that if they had not worked in a month there would be no point in persevering with them.

I will let you know the results of the further investigations in due course. I am only sorry there appears not to be more I can do to help him.'

This seems to be the story of my life right now.

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