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29 May 2011

Post 290: The joys of spring - yeah right!

A slight change in strategy today -I'll explain – I went on about how finding my new carers had made me a happier man so I now realise how vitally important they are for my mental health. Obviously the #1 priority should always be about feeling better/normal again so I'm not about to stop all the physiotherapy or any plans my neurologist has (even if physiotherapy strikes fear into me in the same way PE would strike fear into a fat 10 year old boy who's forgotten his gym kit)
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.

Yours sincerely,


Dr O. Malik
Consultant Neurologist

– 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


Hi, I'm Dom and I'm a wheelchair using stroke survivor (I'm 34). I need help Monday to Friday, in the mornings from 8:45 am to around 10:15 - 10:30 am and in the evenings to cook me a meal.

I live in leafy Oxshott, which is 35 minutes by train into London. I'm also close to Cobham, Esher, Epsom, Leatherhead, Ashtead and I'm about 25 minutes from Kingston. I have parking space available, if you have a car, I have a mobility van that can be driven by anyone over 25 with a full UK licence. This is a 'nice to have' but is by no means compulsory.

I have an established routine and I'm quite independent, chronic fatigue is my worst symptom but my left side doesn't work at all. I use an electric wheelchair. My brain is fine and I can be quite intellectual at times, but my body doesn't always catch up and sometimes I can get a bit down and depressed so upbeat, positive and enthusiastic can-do people are a must. I have lots of technical aids to help me and I live downstairs, which is specially adapted for me. [there is a seperate ad for the weekends because [despite wishing it did] Stroke doesn't take time off.]
I have three mad (but adorable) cats, Ham, Cheese and Pickle, so you'll need to be animal friendly and to be able to do a couple of hours cleaning, to keep the house nice, as I can't do it.

In return for this, you get a huge en suite double bedroom upstairs with all utility bills paid for, with a large comfy bed, lots of storage, a huge work desk and power shower. You also get free WiFi and £100 per week. The room is worth around £100 - 110 per week, so really you get £200 - £210 per week for around 20 hours a week of work.

The sort of couple who would be happy here, are patient, warm, friendly and reliable. You'll also need some work references and if you already have a CRB, then that would be great.To date, my best housekeepers were a late 20s Mauritian Couple who both had caring experience, spoke excellent English and cooked well.

I will choose who to interview based on
1. How good your colloqial english is
2. Your understanding of what is required
3. Your plans for getting a day job if you live here
4. How good your cooking is.( have an idea for what you'd cook to keep me healthy, energetic and slim)

This role may suit post-graduate students, or a couple who are looking for a home base and want extra work in the daytime. There is a lot of cleaning and care work locally and I have a strong network of friends who will point you in the right direction, if required.

If you have any questions, or if you think that you'd be interested in living and working with me, please email me, in the first instance.

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

yfor driving and my housemate from 10 years ago Matt(who despite him being younger, I still can't believe is an MP, and much to the chagrin of my lefty mates, is a Tory one). It is time to maybe acknowledge things are getting harder because of age, but I still think the Stroke is going to get most of the flack! In other news my new van finally showed up on Thursday and it looks nice, the real bonus seems to be that it drives like a proper car which should dispel a lot of nerves and locking in my chair is solely my responsibility and takes seconds rather than the Krypton Factor challenge that the old one used to be.
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!

21 May 2011

Post 289:Being brutally realistic: Keeping expectations low= avoid disappointment

Don’t think I’ve really got much to discuss today but that hasn't stopped me waffle on before. Sam, my lovely Yoga instructor, who’s picture I could never put up too many times is reasonably satisfied that I am taking criticism better but I’m still a ’miserable bugger’, fair enough I suppose but part of her solution is for me to adhere to the old cliché ‘if you haven’t got something nice to say, don’t say it at all'. This is a nice idea but as you'll see later on it's not that I wouldn’t have nothing to say but I’d better not boast about it. ‘what’s that you say? I just have. Oh f*ck.
I guess if I'm to desperately grope for a theme, whoops, I've split an infintive, not a mortal sin I suppose just something that only the biggest grammar Nazis or Trekkies will care about so I'll boldy go to teasingly endeavour to say something interesting/funny but let's not get our hopes up. I barely survive these days and I have access to this computer and the interweb. Living life for me is metaphorically like living in 56K dial-up land, I remember writing what seemed like ages ago how much I was looking forward to getting my new van which would improve everyone's life. Well it's still not here even though I jumped the gun a bit, by getting excited back at the end of February, after the coachwork conversion people said that vital parts they'd ordered from Japan had been delayed by the tsunami. Maybe this terrible tragedy did delay things but my finely tuned Bulls*t detector has deafened me. That hardly matters, still no sign of my new van, they're estimating till the end of next week – it's simple really – there are some things in life that you can do nothing about, there's a classic example coming up, so, there's no point worrying about them although I'm hardly practising what I preach this second, but as an example, when driving, has getting angry with someone in another car ever done anything other than cause amusement or consternation for the passenger of your car, I don't think this is a bad observation ergo 'road rage' being utterly pointless. Speaking of which, any point or theme seems to once again have gone AWOL. The point I think I was in danger of starting to make, in fact that I'm reiterating is that without my computer or the interweb I'd be utterly lost, I am at pains to even understand how we did anything before it existed – obviously this is more acute for me because I hate talking on the phone because of my damaged voice and fatigue. The internet has allowed me to write all of this so I can introduce the real me to strangers and let my existing friends know about what's going on.
I have found carers through Gumtree, old and new friends through Facebook, in fact a new friend who had been badly let down by her job and had nowhere to sleep but her car sent me an SOS and pitched up on my doorstep – as she once took the trouble to take me out to lunch and battle her way round the snow-closed M25 to take me to a concert. Kindness will always beget kindness in my book, and she has been so brilliant,filling in for my housekeepers and utting up with me. I won't have someone sleeping in their car if I can help. She also told me the funniest story, on going to see a warehouse share in High Barnet the other day she was somewhat surprised to find one of the 'girls' living there was a 6'8” pre-op transexual, she was ever so slightly taken aback by he/she/its comment 'they've done a great job on you, who's your surgeon? The perils of being a 6'2” girl eh? Well being complimented on your Op by a transexual may sound like a horrific insult (albeit unintentional, somewhere up there with offering a fat girl your seat on public transport because you think she's pregnant) but given how immaculate transexuals keep themselves I think it's rather a compliment, I'm probably rapidly digging a hole here!
So, at least I've been able to be of some use but I was especially chuffed by the visit of Dan and his mum on Wednesday, Dan used to be a fairly decent DJ years ago when he was one half of the Cheshire Catz, probably still is and as there's a slight cross- dressing theme to today's post it is pure coicidence that his DJing partner in crime was called Jon but now goes by the DJ name Poppy Cox, thought you'd find that interesting. Dan has kept up with my post-stroke progress by reading this and got back in touch with me the other day to share the life changing experience meditation has given him. Before my stroke my mind would have been closed to this but I trust Dan. He may have Done some Crazy stuff in his time but he knows better than to make this up. False Hope is one currency I'd like to remain short of.
Just to reinforce the point that I should always keep my expectations low the perfect carers who have been living with me for the last few weeks have found a better deal so have quite understandably had to take that. After all one of their main aims must be to make money but in the few weeks they were here they gave me a glimpse of what genuine semi independent assisted living might look like. They have also said that they're just down the road if I ever need help but I will miss having them about in the morning and evenings, their attention to detail and keeping the house immaculate plus their wonderful cooking, their can-do attitude and scrupulous honesty. I am gutted but completely understand their need to take this other job. The style in which I am writing this should be proof enough that they had improved things around here (for once) They are even helping me find replacements.
Some decent news for me at least was getting to see Simon on Wednesday evening, I suspect that his patience with me might be growing a little thin because I'm probably less of a laugh than I used to be. He's a good mate but he's only human. Christ, a girl who I had been in a relationship for 7 years and professed to love me left me in early 2008, well, probably mentally well before that as she soon got married to someone else, Even though I think i'm pretty much over that my mental health is still not fully rehabilitated. Oh dear, I've digressed and gone all self indulgent again!
As Simon and I were always best at laughing we were off to see Comedian and top bloke Stephen K Amos at the Hammersmith Apollo last night but that plan was thwarted by the garage who were supposed to be doing a minor repair. Repeatedly ignoring our requests to return it yesterday or today because we needed it urgently. What's wrong with this country? They seem to not give a solitary sh*t about keeping the customer happy!I could scream, c****s - imagine not being able at the 11th hour to see one of your favourite comedians (and you bought tickets months ago) because a moron couldn't be arsed to get someone to deliver the van the 5 mins back to my house despite repeated calls, c****. Amos quite rightly came in for some flack about his BBC2 TV show because he played the 'race card' too hard and some of the Stereotyping might have been appropriate in the 1970s but not now, ie a black man driving a car, the car must be stolen. Pish. Noone thinks that – well, let's hope not. I suppose there is Ironic racism, that's one dangerous flame he has been burnt by failing to get the tail anywhere near the donkey, I'll eat my words if he gets a 2nd series, at least straight away Anyway stand-up is what he does best but there's little point me trying to pretend I'm not furious. C****!

15 May 2011

Post 288: It's not sadly about fun, it's about finding different things to do

I’ve been at pains to try and explain this. I can’t just have fun these days feeling like this. To use the often seen internet dating tautology, I am fun- loving but surely everyone is? Regular ‘Botherers’ will have noticed I’ve been knocking out two (posts) a week recently but it’ll be one a week for the forseable future because I need to try and rest and meditate more. This week I have unhelpfully taken to watching ‘The Soprano’s’ on my computer. It’s actually pretty depressing stuff but it is so beautifully acted and so real, sometimes too real and gritty, like the highly recommended ‘The Wire’ which I couldn’t keep watching. In fact they’re probably the same series, just replacing ‘gritty undercover US cop’ stereotypes with ‘gritty US mafia’ stereotypes.
Stereotyping exists because we can’t be arsed to try and contemplate the limitless types of people in this world (be they cops or gangsters or whatever), Stereotypes have their critics, me among them but they’re often on the money, I criticise them if they hinder people because a stereotypical characteristic causes prejudice that get’s in the way of reason but often stereotyping can be funny, for instance not all Germans can be humourless Speedo wearing sun-lounger hoggers, that’s just the men obviously, german women either are allergic to razors ( images I found fo this raped my eyeballs) or look like Claudia Schiffer,(any excuse) clearly they don’t but it’s funny to think they are. It’s just idiots that take this too seriously that are the problem, I’m not done generalising yet, anyone who takes anything too seriously is a problem although clearly all scousers are ‘thieving bastards’ and all French people are ‘Cheese eating surrender monkeys’ who smell faintly of garlic. This is plainly ridiculous but they’re funny to ‘faux believe’.
Anyway, back to the Sopranos – Tony Soprano ( the main character and lead gangster type is depressed and has had a few panic attack collapses so his neighbour (an Italian Dr) refers him to a shrink to talk about what’s stressing him out. The shrink is Lorraine ‘cwoffee’ Bracco who I’m sure has been genetically engineered to be THE Italian American actress. Now obviously Tony can’t incriminate himself so he talks to her in a series of high-falluting euphemisms which refer to his nefarious activities, but Ms Bracco is under no illusions about Tony’s ‘stereotype’ activities which are given away even more by his cover story that he is a ‘waste management consultant’ – he doesn’t even have to give her a nod or a wink or say ‘bada-bing’.(coincidentally the name of the strip joint that doubles as his office)(I'm not making this up!)
What really interested me and struck a chord was his attitude to talking about things and taking Prozac to help with his mood. I, before this happened, used to be the kind of guy that could internalise problems, although I’ve always had a partner in crime with an absorbent shoulder, you know who you are! Fundamentally, like Tony Soprano, I’ve always thought this was no-ones job except my own, which is fine if you can go to the pub, have plenty to drink and laugh things off, or take solace in the tender embrace of your significant other or sweat your guts out in the gym, but now I either can’t do these or I don’t get the release from them because of how I physically feel, so in a way I can draw a tenuous parallel with how I feel and how Tony Soprano feels – of course it doesn’t help that he is always worried that someone’s going to kill him which I don’t think is one of my worries although I’m sure Oxshott is a hotspot for organised crime unlike where I used to live (in Brixton) – which was a hotspot for disorganised crime.
Anyway, there my parallels (if there were any) with Tony Soprano end, I think my point is that as much as we probably think we have to internalise problems – we shouldn’t. That’s what family, friends, therapists or anyone you can talk too are for and is why I will do anything for them.
As I’m getting a bit emotional, I was reflecting on the gig I went to at the Dome last night by playing a tune that almost reduced me to a mess last night ‘comfortably numb’ by Pink Floyd.
Months ago, a good friend of mine suggested that they would take me to see ‘The Wall’ live by Roger Waters at the Dome. I understandably don’t get to see much of Sharon and Ian now they’ve got two kids, any spare time they have is quite rightly spent with each other but naughty Sharon’s diary management fell apart this weekend – I don’t envy her trying to organise her kids and keeping Ian tethered, Betts can be as loose a cannon as the best of them, hehe, so I was slightly gutted but not too surprised when Ian called me up to start the call with ‘I’m really sorry mate etc etc..’ It was their loss as this gig easily becomes ‘a top 5’. It’s a shame that Pink Floyd fell out but it’s good that Roger Waters can still perform ‘The Wall’. In my eyes Pink Floyd are the kings of the ‘soaring guitar’ sound –that has been imitated the world over. I can hear Guns and Roses attempted mimicry at every turn but Waters wrote the Wall in1981 as a rock opera which signifies to me at least that this work must have been influenced (as so much is) by fundamental dissatisfaction with the world – the way capitalism, war and geopolitics seems to fill the world with death, unhappiness and suffering, that and the band were on a lot of drugs so the contrast between the happiness and bliss of their world was sharply at odds with the real ‘grim’ world. It was sh*t back in 1981 too. Anyway, that’s more than enough of my nonsense. Big thanks to Olly and his sister Camilla for stepping in and taking me last night, it was definitely their thing. I’m on safe ground saying we all found it spellbinding and the Dome show was amazing.
Also, big thanks to my friends Jon and Megan for coming to see me – I’ll never forget their spectacular wedding . Although like the tw*t I am I was expecting them next weekend so my ace housekeepers on my instruction borrowed my van to get to their other job, so we had no way of going to the pub for the usual. The day was saved when they agreed to hop in the car and nip to the brilliant Cobham Chippy then come back and eat it here. Not healthy but what a treat! And believe it or not Megan is 9 months pregnant!

7 May 2011

Post 287: Lets just calm down

A tricky subject today, but nonetheless one I feel I need to talk about. Obviously you get criticised in life, by people in positions of respect; To me you innately gauge respect based on lots of different things; education; experience; age; gravitas; presentation etc etc. You also get criticised by your friends and those closest to you but the big question is: At what point does the criticism become an attack? And when does the critic/attacker cease to become a friend because my standpoint (for rightly or wrongly) is to assume everyone is a friend until they do something that makes you think otherwise. Maybe this is too trusting an attitude but I don’t have the energy to automatically mistrust everyone. There are people in this world like that, all with a story perched on the tip of their tongue about how it’s so paid off to have this attitude. Crikey, if I’d been like this I’d have got nowhere in life and since my stroke would have had to have booked a one-way ticket to the Dignitas clinic!
On a sort of related subject, it has always struck me as odd the way that humans behave. For example I could never quite work out why when you split up with someone you were madly in love with, why never seeing each other intentionally ever again was even on the list of options, it's bizarre that someone you were so close to and so comfortable with becomes like Kryptonite.
My last girlfriend could never understand how I could stay friends with my former girlfriends – half jokingly, half facetiously, I would say 'because then I'd have no female friends. That's right, I was a tart – god knows how!
I have also never been great at taking criticism. I think I can hear the words 'no sh*t, sherlock' forming in a few minds! In the pre-stroke days I felt I could at least listen and argue back, now I feel too tired to even put up a fight, at least straight away – in this medium (ie online), at least I feel I have some chance although naysayers have accused me of manipulating this, well I say f*ck 'em, it takes a lot to summon up the time, inclination and energy to even write anything. The latest row was seemingly won by the other person saying 'I was just being honest’, 'I simply didn't say what you wanted to hear', which got me thinking, if that is true, how has anyone got anywhere in life or got any honest friends? Friends to me are those who make you feel good when you see them, they make you laugh, they interest you, you trust them and they also advise you – now it is in my opinion the way which someone advises you is what identifies them as a friend, enemy or a bore to ignore. This is somewhere emotional intelligence rears its head again. I have been put along the whole Spectrum from emotionally intelligent (by a few of the senior bods at my last job to emotionally retarded (cruelly by a girl I was in love with) because I used to say emotion tends to invalidate most arguments (something my Mum and the Daily Mail could learn from), but emotional intelligence means that you have the powerto help people feel better and emotionally retarded means that you make them feel worse. A lot of this seems to be stylistic, ie it's as much to do with how you say it as well as what you say and having this stroke has screwed up how I say everything and might have put a teensy weensy bit more of a cynical/nihilistic/sarcastic slant on what I say although I was well chuffed when a friend I've met since my stroke called me a 'true gentleman, who understands emotions better than Shakespeare’ (post 210 from May last year ) Amber, I love you and your cheques in the post!
But seriously, lots of people tell me things I don’t want to hear all the time, because they don’t know me or aren’t directing them at me, that’s fine but it really hurts when someone who you thought was your friend is quite unpleasant, but excuses it by saying ‘I’m just being honest or that ‘ it was something you didn’t want to hear’, is it me or is that just being nasty, It's immaterial because it's more likely to get blood out of a stone than for them to apologise. Heaven Forbid they find out what lonliness is about. Maybe I can’t roll with the punches like I used to but I am feeling particularly vulnerable now so my job this week has been to try and take criticism better suggested to me by my lovely yoga instructor Sam. She is such a calming/relaxing influence and her looking like Billie Piper doesn’t hurt. She is worth her weight in Unobtanium and is quick to tell me if my mood seems better or worse each week or tell me if my balance is better or worse. The stuff about my mood is reinforced by my ‘worth her weight in Gold’ counsellor Cathy whose opinion I now respect enough to ask her to this hastily arranged medication discussion with Dr Malik next Thursday. On the homefront my new housekeepers/carers are brilliant. I feel that I am edging towards the kind of life that I envisaged ‘assisted living’ to be. It’s not my first choice of where I expected to be at age 34, but it’s better than being dead. That doesn’t mean ‘I’m glad to be alive’ yet!
One thing that put a smile on my face was being mentioned in another stroke survivors Blog. This guy, Louis, is a bit older than me, a former photographer and lecturer, describes me as a ‘bon vivant and good guy’ but most importantly cites me and this blog as his inspiration for his writing – an unbelievably nice thing to say. He writes so well and his observations about how he felt when he was in hospital are spot on.
I’ve got this appointment about my medication on Thursday which if I’m honest I’m nervous about.

Big thanks this week go to Jo for driving miles to take me out to Lunch on Monday – although I have little doubt she would have made a great housekeeper, I couldn’t have asked her to give up her life and job in Basildon plus my recent experience has taught me to keep the housekeeping arrangement formal plus I think this is a job for more than one person. Secondly, I want to thank Dan ‘cat’ for taking the leap of faith and pressing send on a mail he has sent me on the life-changing experience he is having with meditation, it is the fillip I needed to get back into it. I briefly had a go last year but I was no bloody good at it. Dan took a chance sharing his story with me because I’m a cynical empirical b*stard but these days I will listen (albeit critically) to ANYTHING that might help, although nothing will make me believe in god (especially a benevolent, omnipotent one).
My final thanks are thanks in advance to my great mate and slimmer Nick Walmsley who for no good reason is coming to shoot the sh*t wth me this evening. I can think of no good reason why he’d rather see yours truly rather than spend the evening with his gorgeous wife and kids. It’s official, I have been single too long!

1 May 2011

Post 286: Striving for change




I have come to a fairly simplistic conclusion about why I do everything I do, for fear of sounding like Obama or Cameron, it's CHANGE. At the moment, most of my waking existence is about trying to find a way to feel different – feeling tired and depressed is utter sh*te so I do everything I can to change that. My housekeeping/caring/day2day living situation has recently changed and I feel like a different person. I have gone to great lengths to change the structure of how things are with my living situation. Before, there was always a very informal arrangement and I would always take people on on that basis. It was fine if we always got on and stayed out of each others way but that didn't/couldn't always happen. The best people I ever had looking after the house and to a lesser extent me were Ilona and Mariusz. They both had jobs, were out during the day, they were quiet, reliable and trustworthy. I hadn't realised how lucky I had been. Sticking to informality and frankly luck, my next carer was a random acquaintance with no job and no home who taught me pretty fast that this needs to be formalised because no 'employer' in history would put up with what I had to put up with, neither of us were happy. Now, I have a formal contract drawn up by a care consultant and the couple who are living here know that they are my employees first, closely followed by being friends – what a change! Nothing is too much trouble, they have worked as carers before, their references couldn't have been more complimentary, they Spring cleaned the place as a matter of course and yesterday, spent the evening recommending me supplements to increase my vitality, this is a huge help because I am always ears for any ideas that may change the way I feel. On top of this my counsellor, Cathy has suggested two things. Firstly, that I get Dr Malik (the consultant neurologist who I got in touch with last October ) to review my medication as per this letter he wrote to my GP.
Thank you for referring Dominic whom I saw along with his parents at Mount Alvernia Hospital on 26th October 2010.

I remember Dominic well from around 15 years ago when he was playing golf for Oxford and I was for Cambridge![A Bizarre Coincidence]

Unfortunately, I was also on call at Christmas in 2005 at Charing Cross Hospital when Dominic presented with an acute large right intracranial bleed which subsequently was found to be due to an underlying arterio-venous malformation. He had a very stormy course initially, but subsequently has recovered though with significant deficits. Fortunately, his cognitive function remains normal, but he had numerous complications in relation to upper brain stem dysfunction including hemi-dystonia syndrome, cerebellar problems and ocular bobbing which is causing oscillopsia.

Dominic had gamma knife surgery about three to four years ago, but unfortunately has not had subsequent follow up angiogram. I will therefore be contacting Kings College Hospital (Dr Neil Deasey Consultant Neuroradiologist) to get all his previous imaging sent over for me to be able to arrange a further follow up angiogram at Charing Cross Hospital sometime in the near future.

Dominic's main symptoms are that of profound fatigue which has not responded to modafinil or ritalin. In fact the latter seemed to exacerbate paradoxical dysfunction of his brain stem!

He has also been seen by Dr Angus Nisbet (Consultant Neurologist Brighton) who had suggested a series of drugs to try for his fatigue including amantadine and 3-4 diaminopyridine.

We therefore had a discussion around potential therapeutic avenues to pursue and one of the drugs that was not mentioned previously was that of levetiracetam (Keppra). This particular drug is an anti-convulsant and more recently has been found to be a membrane stabiliser which may also help with oscillopsia and may also help some symptoms in relation to spasticity and fatigue particularly in the context of demyelinating disease[MS]. Dominic is keen to try this particular drug for which I have no objections since it is pretty safe and has no real significant side effect profile.

Can I suggest starting him on 250 mg at night initially, which after a week can be increased to 250 mg bd and after subsequent fortnight to 500 mg bd. I would then give it two to three weeks on that particular dose than increase the dose again to 750 mg bd to see how he gets on in terms of fatigue and his oscilloptic symptoms.

Other alternative drugs to try once he is weaned of the levetiracetam, if it is unsuccessful, would be to use amantadine initially 100 mg bd which after a month can be increased to 200 mg bd. Should this not be effective after six to eight weeks. I have suggested for Dominic to come back and be reviewed again at Mount Alvernia Hospital where we will consider whether a newly emerging therapy (Fampridine Fampira) which has just been licenced in United States may be helpful. This particular drug which is a derivative of 3-4 diaminopyridine has been used in patient's of demyelinating disease and found to be very effective in increase in walking speed as well as fatigue symptoms. This would be my third drug to try, but only after the two outlined above.

Dominic is also somewhat troubled by the dystonia and retrocollis, but I do not think that is causing him significant functional impairment at this stage.

I will keep you informed in due course.

Yours sincerely,

Dr O. Malik
Consultant Neurologist

All very interesting and all geared towards getting things to change. The 2nd thing was to review my physiotherapy program with a neurophysiotherapist just to try and set some short to medium term goals as Ian and I are pretty clear on the long-term but we've always struggled with our expectations for the next month or even the next couple of weeks.
Boring and functional and no comedy this post maybe but that can be life in a nutshell even for able bodied people. I hope it shows people that I'm trying to do something with my life. Things may be hard, and despite the doubters, this isn't over.

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