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

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!


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