Here's a copy of my neurologist's latest letter to my GP
I saw Dominic and his family at Mount Alvernia Hospital on 12th May 2011.
Dominic has been on levetiracetam 500mg bd and fluoxetine 20mg a day for the last few months but has not noticed any benefit. As a consequence and possibly also because he had an exacerbation of his balance difficulties he discontinued the treatment a week or 10 days ago without any ill effect.
One of the things that came to light during our discussion today was the fact that he had four episodes of nocturia[A FANCY WORD FOR PISSING AT NIGHT, WHO KNEW? It was the first time they've been called episodes, how dramatic!] every night, which is clearly disrupting his sleep pattern. As a consequence, he has quite a lot of fatigue during the day often manifest with him requiring periods of rest in the afternoon.
I have suggested therefore and can tackle underlying basis of nocturia (detrusor instability?) might be helpful.
I have recommend that he is referred to the Urology Department at his Local Hospital (Epsom), where a pre and post-micturition volume can be assessed and appropriate pharmacological interventions can be instituted. If there is a significant improvement in nocturia, it might allow better sleep and improve his daytime fatigue.
I have also alerted him to the possibility of a new drug for the use of fatigue which is going to be licensed for multiple sclerosis but may also have an impact with other neurological disorders (Fampridine - Ampyra). This drug has been approved in United States and is awaiting approval in Europe and I will keep them informed of this in due course.
Dominic finds that daly[sic] physiotherapy tends to impair his function for the day and I have suggested to him that five to six years down the road from his original cerebrovascular event, there is no added advantage of intensive physiotherapy. What is probably more appropriate is for him to have maintenance physiotherapy possibly through a neurophysio.
It was the view of the Multidisciplinary Team at Charing Cross Hospital that Dominic ought to have a further MRI scan of the brain with gadolinium to reassess the AVM which was clearly evident on his scan earlier in the year. I will be arranging this for the new year and review Dominic following that.
Dr O. Malik
– overall this means that I'm going to spend more effort finding the right carers again because what a difference it makes. I am still gutted about losing the last guys, but I have been helped by a friend who I met a while back who actually replied to a gumtree advert I placed a couple of years ago. We have kept in touch through facebook and She has re-written the advert[I figure copying these things to be of interest and mean less one finger typing for me!]. It is now clearer I think:
Part-Time P.A./Housekeeping Couple required
START ASAP, INTERVIEWS FROM TOMORROW
I got taught a lesson this morning (Saturday) because the last thing you can afford to do when you're in my position is expect things to just work. I spent some of yesterday afternoon trying to find emergency cover for this morning (without success), I should have just carried on looking till I found someone but alas, the combination of fatigue and virtually no concentration span, meant I didn't and I was only saved this morning when my hero friend Froniga who has been staying here, delayed her plans so she could help me do my morning routine and make me breakfast. This is so kind of her but I have massively inconvenienced her – something I desperately try not to do, and I must try never to do.
If I am to survive, I expect kindness and people should expect courtesy back. I apologise for being sh*t.
I also want to say thanks to lovely Caro (short for Caroline) for coming to see me for tea,chat and the hilarious Kevin Bridges on DVD which I challenge anyone not to laugh at. Someone who has deigned to meet me on the strength of some emails, this blog and the fact our mothers vaguely know one another. I hope she's not too horrified by me!
My tenuous link was that I saw Kevin Bridges live at the Dome on Tuesday at Channel 4s comedy gala in aid of Great Ormond Street (the 2nd year I've been). Kevins best joke (in my opinion) was oddly relevant to me, pointing out that Europe was far from harmonised 'if you consider taking a nap in the middle of the day, in Spain they call it a siesta, in England they call it depression' At the Gala were about a billion of the countries top comedians (and Chris Moyles) each with about 30 seconds each. As usual it's virtually impossible to remember most of it, because it was about 3 hours long and I helpfully forgot to take my camera but I do remember Mark Watson's observation that saying someone with 'guts' has got 'balls' is a bit sexist but when you consider the alternative that 'someones
got vag' it just doesn't sound right!
Dara O' Briian's observation that using the words 'dirty' and 'naughty' as well as phrases like 'who's your daddy?' just sound wrong when you've got a 3 year old daughter was hysterical. The comedic theme at the moment seems to be about how getting married and having kids is just hilarious, not in itself perhaps but it seems to be a material goldmine. My favourite though was probably Jack Dee's assertion that A&E waiting should be in proportion to the stupidity of the injury! I've got a few mates who in that case would still be waiting and perhaps a couple of times I broke my arm over 20 years ago I would have just had to grit my teeth. Big thanks as ever go to Olly
Finally, and I make no apology for this: I appreciate that people are busy and that I spend a lot of time in front of my computer, I would like to encourage the practice of replying to emails that need a reply (from ANYONE but particularly from me) straight away rather than sitting on them for a couple of days. I try not to send frivolous messages, I don't have the energy, I probably used to. Because my mates seem to have an above average number of smartphones/blackberries/iPhones etc there is no excuse and the excuse ' I don't use facebook' is a lame one too because you can be sent emails telling you what has been said. Leaving it longer than a day is just plain rude. My excuse is that I might have missed an email because of my wretched eyesight or I can't just bound over to my computer! There, I've said my piece. Rant Over!