2016-04-30 – Elated and impulsive

My son and his girlfriend travelled up to Norfolk from Dorset this morning.  He’s been very worried about me having the operation, and he’s now anxious to see me to make sure that I’m still the same person I was before, and also that it has had the desired effect.  He is really chuffed at the sight of me, virtually tremor free, and definitely the silly bugger that I was before having holes drilled in my skull.

My wife’s family and my mum and brother want to come and see me, so we decide to meet in The Vernon Arms.  I arrange with the landlord to serve us some cheesy chips when everyone arrives.  I manage to buy a round of drinks this time, and it’s a very jolly evening.  I’m on cloud 9, and chatting away to my wife’s brother…  My wife came over to us and asked “are you okay?”, “yes,” I replied “but I think I’ve just told your brother that I love him!”.  And so I had!  Impulsive behaviour coming to the fore again, probably because I was on a bit of a high seeing my son, my mum, my brother etc. – I think the additional stimulation from my device just tipped me over the edge.  I also drank far more beer than was (probably) advisable, although not enough to give me a hangover the next morning.

2016-04-29 – Going home

Up and at ’em!  Painkillers, breakfast, check out of the hotel, cases stored for collection later, then to the NHNN for a final appointment with Joseph before going home.

Joseph was happy with the existing settings, no side effects emerging, so he left things as they were.  We said goodbye, gave him a large chocolate cake to share round, and a card that simply said inside “This is a sample of my best handwriting” – something that Joseph had had me write many times before to assess my tremor/handwriting, and which was now improved beyond belief.

We collected our cases from the hotel, and headed off to Charing Cross to catch a train to Hither Green, where my wife’s car was waiting outside Fig Tree House for us.

We left a card and a box of chocs for John and Ruth, the owners of the B&B, and also paid a visit to my pal Gerry in his log cabin at the bottom of the garden.  Loaded the car up with our luggage, and set off homeward around 1pm.  Sat Nav said we should be home around 4.30pm, but it was after 6.30pm before we arrived.  Not sure what happened, probably just sheer weight of traffic on the Friday afternoon of a bank holiday weekend, but we were in almost stationary traffic between the Blackwall tunnel and the M11 for a couple of hours.

My garden before
My garden before

We arrived back at Southrepps in heavy drizzle to find a small crowd in my back garden.  My wife’s 2 sons, their girlfriends and her ex-husband and girlfriend had transformed the place while I had been in hospital.  It had resembled a municipal tip beforehand, with stacks of tree half filling the space (from a 30′ Leylandii that I had had cut

Garden transformed!
Garden transformed!

down a couple of years before), an old bicycle, stove pipe and other assorted rubbish that I had nowhere else to store, and no energy or inclination to sort out.  Now it was actually a garden, with flower beds, paving slabs that had emerged from beneath all of the crap, a garden table and chairs, bird table, new fencing panels to replace the ones that had expired, and gates that opened and closed!

We retired to our lounge, out of the drizzle.  Two minutes later there was a knock at the door – it was the landlord of The Vernon Arms, clutching a bottle of champagne and two glasses – a gift from some of our neighbours who had seen us arriving home!

Vernon Arms
The Vernon Arms & landlord Paul

We decided to retire to The Vernon Arms so that I could buy them all a drink as a thank you for my fantastic garden.  I managed to order the drinks, but wasn’t allowed to pay for them.  The landlord bought the round – “I look at it as an investment, Ian” he said, “you aren’t shaking any more, so you’ll be able to drink more beer in future!”.

Everyone has been so kind.

2016-04-28 – The Lion King

The usual routine… wake in some discomfort, take painkillers, get dressed and scoot down to the restaurant for another fab breakfast.

Another appointment with Joseph at the NHNN at 10am.  We travel by underground again –  really suffering with my legs, probably due to all the exercise I have had this week.  My balance isn’t great at the moment, either.   Joseph re-programs the left hand side, setting it back to use the contacts that he originally set it to when he programmed my device the very first time.  This was the setting that had caused me to behave slightly impulsively previously.  It is unclear if it was the left hand setting, the right hand setting, or both settings which caused the problem, so he wanted to see if the side effect re-emerged if he only set one side back to that setting.  Hope that’s clear!

I really wanted my wife to see The Lion King, having seen it myself on 2 previous occasions.  I thought it was something that she would really enjoy, so we went to Covent Garden on the way back from hospital, and paid a visit to the theatre box office.  Baseball cap off, wide eyed lady behind the counter.  “Any chance of a discount?” I asked.  Two top price tickets in the stalls for an absolute bargain price was the response.

We returned to The Cotton Rooms via the supermarket, grabbing some more ready meals and bottles of Hobgoblin, and being entertained by a street performer near to Covent Garden underground along the way.

Back at the hotel we have coffees, showers, get changed and scoff our ready meals.  There is time for a sit down in the lounge, more coffee and a read of the newspaper before we have to head back to Covent Garden for the show.

I’m feeling pretty good, and no side effects as yet.


The show is absolutely brilliant, and my wife said it was her favourite out of the 3 shows we have been to this week.

We hit McDonalds again on the way back to the hotel.  I am acquiring a McFlurry habit!  It does seem to go well with the Hobgoblin 🙂

2016-04-27 – Showtime again

I wake in discomfort, but co-codamol soon sorts that out.   We head down to the restaurant for breakfast, and then we are off to the NHNN for a 10.30am appointment with Joseph.  We catch the tube this morning, rather than walking.  It takes about the same amount of time, but I’m feeling a little more tired than yesterday, and my legs are really aching – my calf muscles are really tight.

Joseph seems happy that things are back under control, and makes some minor adjustments to my settings.  That’s it!  The rest of the day is ours (unless I decide my settings are causing me a problem – Joseph is happy for me to return any time, which is good to know).

I decide that my wife needs to see another show, and so we decide to see if we can get  tickets for The Woman In Black.  My head gets extremely hot under my baseball cap, so as we enter the box office I remove it (the cap, not my head!).  The bloke behind the counter looks at my head, eyes wide, and offers me the most expensive seats in the house for the price of the cheapest.  It’d be rude not to, so we buy the tickets and head off back towards the hotel.

Into Sainsbury’s, grab a couple of ready meals to heat up back at the hotel, and a couple more beers to enjoy later when we get back from the theatre.

Back at the hotel we heat and eat our food, then go to our room to chill out for a while before showering, shaving (me, not my wife) and heading out to Covent Garden.


The show is brilliant, and we both enjoy it even more than last night, although I was expecting it to be more frightening!  It made my wife jump in her seat a couple of times, so perhaps I’m just difficult to please.  McFlurrys again on the way back to the hotel, which went down very well with the bottle of Hobgoblin beer I was allowed 🙂


2016-04-26 – A little impulsive?

I have an appointment to see Joseph back at the NHNN at 10am, so we are up, showered and having breakfast by 9am.  The Cotton Rooms is a really nice hotel, and the range of food laid out for breakfast makes choosing quite difficult.  I settle for tea, fruit juice, cereal, yoghurt and pain-au-chocolat; and then decide to have bacon, sausages, poached eggs, baked beans and hash browns.  By the time we have finished breakfast, it’s almost 9.30 and my wife is getting anxious about the time.  We dash back to our room, grab a few things, and then head off on foot to the NHNN.

We arrive at the hospital just on time, but by the time we have caught lifts and walked through a maze of corridors we are a few minutes late.  Luckily Joseph is running a few minutes late as well, so it’s not a problem.

Joseph wants to know how things have been, and my wife tells him how surprised she has been at all the changes to me other than the tremor, such as my muscle control.  I’m buzzing with it – “Wow, yes, muscle control!” I say to Joseph, “Absolutely amazing!  Considering how much laxative I have in my system, I can fart and not follow through!”.  Joseph laughs, and then looks at me.  “Would you say your behaviour is a little impulsive?” he asked.  “Yes! Absolutely!” I say.  “Yes!!!!!!!!” said my wife.  I had assumed that my state of mind was due to my elation at the success of the operation, but it evidently went a little deeper than that.  I was not just on a high, I was saying things that I wouldn’t normally say to people that I hardly knew.  My behaviour was also a tad reckless.  Joseph explained to us that this kind of behaviour can be one of the side effects of DBS, as well as of the dopamine agonists, but that there was plenty of scope for adjusting my neurostimulator to avoid it.  My device programming thus far was extremely basic because he had got a decent response without having to go any further.  He changed my settings to utilise a different contact on my electrodes.  This setting was not quite so effective at controlling my tremor, but Joseph explained that he would try reverting back to the other contacts in a few days when, hopefully, the swelling in my brain would have receded a little and the side effect would also, hopefully, have receded.

My wife was very relieved.  She hadn’t wanted to bring me back down to earth when I  was so obviously thrilled at feeling so much better, but she had felt that my behaviour was completely out of character.

My wife had never been to a West End show, so I suggested we go to see one rather than going to the Blues Bar this evening.  She is excited about going, but not sure what to go to see, so I ask Joseph for a recommendation.  “Les Miserables!” he enthused.  “It’s the best show I’ve seen.  Don’t forget your tissues though – I’ve been to see it 3 times, and cried every time”.  Okay, that was a definite maybe.  He also said that he had heard that The Woman In Black was very good as well, if a little frightening.

We set off to Fig Tree House to get some more clothes from my wife’s car, which John and Ruth had very kindly allowed her to park there until I am sent home this Friday.  We also drop in to see my mate, Gerry, in his log cabin at the bottom of the garden.  We mention going to see a show.  “Les Miserables!  Fantastic!  Don’t forget your tissues!”.  That was settled then, provided we could get tickets.

We returned to The Cotton Rooms via the theatre box office, and managed to get the best seats in the house at bargain price.   Heated a couple of ready meals up in the restaurant microwave, and tried to rest up a little before going out to the theatre.

I’m feeling much calmer now, and my wife seems a lot less stressed by my behaviour, so I assume that I am now back in character!  It’s very difficult to see from my side.  I don’t see the body language.  The only thing I had noticed was a slightly manic quality to my laugh, which my wife and my pal had not noticed!  It took my wife to point out to me that the muscle control remark that I had made to Joseph was not a remark that I would normally have made to someone I hardly knew.

lesmisLes Miserables was excellent, but neither of us cried (just as well, because we did forget our tissues), I think we were all emotioned out at that point.  We returned to the hotel, grabbing chocolate caramel McFlurrys on the way.

2016-04-25 – Freedom!

Charlie is going home today, now that they have sorted out a care package for him.  My wife and I have a bottle of Jameson’s for him, which he is very pleased about. “You’ve made it almost bearable to be in here” he said, shaking my hand  I’ll take that as a compliment, Charlie!

We go to see Joseph for a bit of a DBS tune-up, and he increases the voltage slightly, reining in my tremor once more.

They want my bed as well, and propose putting my wife and I up in The Cotton Rooms and then seeing me as an outpatient for the rest of the week. Sounds good to me! My pal from Brighton is visiting today, and arrives while we are waiting for the pharmacy to dispense my drugs for discharge.  Soon we are delivered boxes of paracetamol, codeine, antacids and laxatives, and a huge bottle of liquid laxative.  We decide to walk to the Hotel – it’s about a 20 minute walk and I think I can do it if we take it easy, especially since we have my pal here to help us carry our luggage.  We arrive at The Cotton Rooms, check in and take our luggage up to our room.

Ready to leave for the Blues Bar!
Ready to leave for the Blues Bar!

After some recovery time, we decide to go to the Blues Bar for a while, and head off for the underground.  My pal is quite keen to get something to eat, but I’m a man with a mission – to get a decent seat in the Blues Bar, where I won’t get my head knocked, before it gets packed – so my wife and my pal trail along behind me.  My wife is really quite concerned about me and wants me to slow down a bit, but I’m insistent that I’m fine, just dodging around the dawdling tourists!  We stay in the bar for several hours, listening to the live music and drinking pints of cola (no ice!).  We get a little something to eat in there – a couple of packets of crisps each.  I’m still really “fired up” and a bit loud but that’s only natural, isn’t it?  My pal heads off  back to Brighton, and my wife and I catch the tube back to the hotel, stopping at McDonald’s on the way to get chicken burgers and ice creams to take to our room.

2016-04-24 – Out on the town again

I sleep well, and wake around 6am feeling incredibly good.  Blood pressure.  Pulse.  Light.  Questions.  Painkillers.  Laxatives.  Big smiles all round.  Everyone remarking on my lack of tremor.

Hospital breakfast of toast, butter, jam, tea.  Wife arrives with bacon butties for me and Charlie.

The registrar pops in to see me, wanting to know how it went last night, and saying “Yes” to my suggestion of the same again this afternoon/evening – “as long as your wife is going with you”.  I’m looking forward to it already!

I’m still feeling pretty good.  Even though my tremor is starting to creep back a little, I’m fairly “fired up” (as one of my friends put it) with the success of the operation.  I’ll see Joseph tomorrow, have a tweak here and there and all will be well.

The Blues Bar
The Blues Bar

Off to the Blues Bar again, 2 hours of amazing live blues, 3 pints of cola (no ice).  I notice my voice getting slightly slurred as I’m getting tired.  Not unintelligible, but definitely less clear. We head back to the hospital, arriving just as dinner is being served.


2016-04-23 – Off the leash

I try to persuade my wife that we could go to the  Blues Bar this evening.  After all, Joseph had suggested that we go out for a meal, and that wasn’t so different, was it?   I got plenty of negative feedback, so I said I’d ask the nurse, and if she said “No” then we wouldn’t.  Agreement on that one!

As luck would have it, the registrar called around to see me with one of the senior nurses that lunchtime.  I asked if it was permissible for me to go to the Blues Bar for a couple of hours of live music.  The nurse shook her head, and said “No” at exactly the same time as the registrar nodded emphatically and said “I don’t see why not”.  Nurse and registrar looked at each other, and then the registrar said “he’s my patient, and I say yes”.  He looked at my wife and I – “just don’t get drunk!”.

So my wife went shopping for a baseball cap while I try to snooze for a while during the visitor exclusion hour from 1pm to 2pm.  When she returned, I get myself dressed in my jeans and T-shirt, shoes and socks and with my smart new navy baseball cap covering my dressings, we took a leisurely stroll to the nearest underground station.

Flashing my dressings on the tube
Flashing my dressings on the tube

We arrived at the Blues Bar 20 minutes later, found a good table in the corner, and ordered drinks.  I would have had a pint of bitter, but my wife wasn’t happy about that so I had a pint of cola instead.  I’m sure if the registrar meant me not to have an alcoholic drink he would have said “soft drinks only” rather than “don’t get drunk”, but in truth I really didn’t mind.  I was high on DBS, so elated at being tremor free.  We drank our soft drinks and listened to the live music which was excellent, as usual.  My wife and I reluctantly left after our allotted 2 hours and returned to the NHNN, where dinner had just been served!

2016-04-22 – Initial adjustments

Slept well until 6am.  Blood pressure.  Pulse.  Light.  Painkillers.  Laxatives – because codeine will do that to you…

Breakfast – toast, butter, jam, tea.

Decide to distract Charlie, so tell him that he was making a lot of noise in the night, and I had recorded it for him to hear.  “Really?” he asked, as I handed the earphones to him.  I then played the Derek and Clive (Peter Cook and Dudley Moore) sketch, Nurse.  If you don’t know this one, you can find  it here – Nurse!.  He almost wet the bed laughing at that, and for the rest of our time on that ward, whenever a “certain sound” emanated from his direction, I would pop my head up and call “Nurse!”, and Charlie would chuckle away.

My wife arrives at 10am with bacon and egg muffins for me and Charlie.  Delicious!

We go to Joseph’s office, and he checks my tremor and makes some small adjustments to my neurostimulator.  The brain will be swollen where the electrodes have been inserted, and as this recedes, so the effects of stimulation change.  The tremors that have crept back since yesterday are calmed, and Joseph tells me that I can leave the hospital for a while, take a stroll, even go out to dinner.  It’s Friday today, so no more adjustments until Monday.  If I think that I need further adjustment before the weekend, I just have to wander round to Joseph’s office before 5pm.

Joseph cleaned the wounds on my head and chest, and then plastered me in sterile dressings.  I felt like a proper twit, but I think it made me more aware of the danger of infection, so that could only be a good thing.  The last thing I wanted at this point was to get an infection and then have to have all of the hardware removed.

An old friend of mine comes to visit, and we go to the cafe for a coffee and then into Queen Square to sit in the Spring sunshine.  It feels good to be drinking with a steady hand, sitting and chatting without thrusting my hands in my pockets or sitting on them to keep them still.  Got a few strange looks because of my headful of dressings, mind you.

Wound dressings
Wound dressings

Martha Orbach came to see us this afternoon bearing gifts!  A beautiful hand made card and a bottle of red wine 🙂  She was able to tell us about the operation from an observer’s point of view.  Even in retrospect it was reassuring.



2016-04-21 – Turn it on

Wide awake at 5.30am, still feeling emotionally fragile.  A little while later Diana, one of my favourite smiley nurses, came around to do the blood pressure, pulse, light, questions routine.  She gave me the full benefit of her dazzling smile, and said “Ian, what’s the matter?”. My face crumpled and I just broke down in tears.  The operation never worried me at all, not for a second.  This was different.  The thought of my hardware being switched on and it having no effect on my tremor was almost more than I could bear.

By the time my wife arrived, I had eaten breakfast, pulled myself together a bit, and was sitting with Joseph, the DBS specialist nurse, another nurse who was observing, and Martha Orbach who was also observing.  Originally Joseph had said that he would perform the switch on and initial programming on the ward, but then asked me if I was up to walking to his office because it would be more private.  So, we traipsed around the building for a little while and ended up in Joseph’s office, which accommodated the five of us with no room to spare.

DBS Programmers
DBS Programmers

Joseph put the device programmer transmitter over my neurostimulator implant and switched it on.  He went through each contact (there are four contacts on each electrode) changing parameters (voltage, frequency, pulse width, polarity), and observing me closely, determining which contacts were effective, and the parameters that had the desired effect.

My wife, sitting to my left, watching me intently.  Joseph sitting in front of me with his device programmer.  The observing nurse sitting to his left watching Joseph, watching me.  Martha, watching everyone, I think.

Joseph determined that there were three contacts that were responsive, and set about configuring the ones that he thought were best.  He clicked away on the programmer, occasionally asking me if I felt any tingling, how was my speech, watching my hands, making me do finger taps and hand flashes to monitor my movement.  There would be a tingling in my chin, and then it would go.  My voice would be slow and slurred, and then it would be fine.  My hands would shake as if possessed. and then be almost still.  Finally he stopped, and made me do the usual chin and nose touching exercises, and then to put my hands in my lap and relax.

Hands perfectly still.  Voice close to normal.

I looked at my wife, and she promptly burst into tears.  And then so did I.

Joseph, the other nurse and Martha all hurriedly vacated the room to give us time to compose ourselves, bless them!

My wife and I were just bawling, and then we looked at each other and a second later we were both laughing hysterically.   And then bawling again.  And then laughing hysterically.  I think that neither of us had allowed ourselves to believe that it would have such a good effect, and when it did we didn’t know how to handle it.

Back on the ward, and for the rest of the day, we were fighting our emotions.  One moment we were in tears, the next moment we were laughing.  We simply couldn’t believe how amazing the results were.

2016-04-20 – The day after the day before

Dawn.  Still awake.  Still having my lying down workout.  Blood pressure.  Pulse.  Light.  Questions.  Painkillers.

Battle scars!

Empty drip taken away and not replaced because I’m being a good boy and drinking plenty.  Catheter removed (yowzah!) and I’m told I can get out of bed and to walk if I feel steady enough.  I get out of bed and sit in the chair next to it.  After a little while I stand and tentatively walk to the bathroom.  No problem.  The trip back to my chair is much more confident.

My wife arrives and is pleased to see me up and about.

Various members of the DBS team call around to see me during the course of the morning.

  • My neurosurgeon, wanting to know how I was feeling, how was my tremor, had I experienced any “implant effect” (changes to symptoms as a result of swelling in the brain caused by the implantation of the electrodes)?  Feeling fine, tremor much the same, no implant effect.
  • Joseph, one of the specialist nurses, who made an appointment for me to have my neurostimulator switched on the next morning.  My wife and I could hardly believe it.  After all we had gone through together, we were almost there.  The end of one road, and the beginning of another – or just the end of the road?  Tomorrow morning we would find out.

This afternoon, Claude was chatting on his mobile to someone.   I was vaguely aware of his voice in the background, and noticed his change in tone from conversational to distress.   It turned out that he had been on the phone to his nephew, who was visiting his (Claude’s) wife, who was also in hospital but due to be discharged any day.  Whilst he was talking to his nephew, his wife died.  That poor old man sat in his chair at the end of the ward, obviously in terrible distress, and nobody went to him…  My wife returned from having her lunch and I told her what had happened, so she went to him, held his hands, told him how sorry we were to hear his news, and offered him any help he might require.  I got myself out of bed and joined my wife at Claude’s bedside.  Chatting away to him and trying to distract him from his grief, we discovered that he had been a stonemason by trade, but also a semi-professional motorcycle racer in the 50’s and 60’s (known as Charlie Mates, not Claude Mates, because “Claude’s a bit posh for that sort of thing”).  So I Googled him and found a website with loads of information about him classic50racingclub.co.uk/charlie-mates, and also photographs of him racing these classic motorcycles classic50racingclub.co.uk/chas-mates-gallery.   He told us funny stories about his life, and forgot about his troubles for a little while.  I made sure that all the nurses knew who he was, and they provided more distraction, for which we were all grateful!  Banter and general abuse continued between us.

I’m pretty tired by now; it’s been over 30 hours since I woke up from my operation and I still haven’t slept a wink.  I’m feeling very emotional.  Not sure if it’s a consequence of the operation, or the general anaesthetic, or thinking about Charlie’s plight, or the fact that I’m scared beyond belief about my device being switched on tomorrow.  What if it doesn’t work?

I try to sleep, eyes filled with tears, running down my cheeks, telling myself (unsuccessfully) to get a grip.

I sleep.  And wake.  And sleep.  And wake….

2016-04-19 – Under the knife

Awake at 6am.  Blood pressure.  Pulse.  Light in the eyes.  Questions.

No breakfast.

Showered and changed.  Nice clean gown to wear, open at the back.  Another one to wear over the top so that the nurses are spared the view of my hairy arse.  Compression stockings put on by one of the nurses.

It’s 8.30am.  Porters arrive to take me to the operating theatre, and I’m wheeled into a room full of busy people, my wife by my side.

Ludvic Zrinzo
Ludvic Zrinzo

I see Ludvic Zrinzo, my neurosurgeon, who tells me that they will be performing both operations today because the anaesthetist felt that it was an unnecessary risk for me to have two general anaesthetics.  So,  that has taken the decision out of my  hands.  I’m glad about that, and so is my wife.

I see Professor Marwan Hariz, the head of the DBS team at the NHNN, and he introduces himself, and another neurosurgeon from South Africa who is going to be observing today.

I see Martha Orbach.  Smile.  Wave.

I see Jin, preparing the box that will be screwed onto my head to facilitate the accurate placement of the electrodes within my brain.

Stereotactic Frame
Stereotactic Frame

I see the anaesthetist.

Everyone is busy, everyone performing their assigned tasks.  My wife kisses me goodbye, and I tell her I’ll see her later.  Canulas are inserted, there’s a mask on my face.  Relax.  Breathe.  Count backwards.  Oblivion.

A minute passes and I’m awake again, but the clock in front of me tells me its almost 2.30pm.

My memory is blurred.  I know there were people there, talking to me, making sure I was okay, but that’s all.  I recall seeing my wife coming towards me, and entertaining the thought of a practical joke… I looked blankly at her, and was just about to say “Who are you?” when I saw the look on her face and decided against it.  I think she would have fainted.  I smiled  at her and she smiled back.  All is well.

I’m returned to the ward.  Claude waves to me.  Nurses bustling.  Blood pressure.  Pulse.  Light in the eyes.  Questions.

I feel fine.  No pain.  No sensation indicating the invasion of my body, the alien implants..

Time passes in a blur.  Dinner arrives and I scoff the lot.  Can’t really remember what I ordered, but I know it wasn’t wasted.

I’m offered pain relief, and hesitate.  I’m not in pain, but aware that I may be before too long.  I don’t want morphine, but might want paracetamol later.  I agree with the nurse that I won’t take anything at the moment, but can call her at any time should I change my mind.

Battle scars!

A couple of hours pass, and I change my mind.  Paracetamol and codeine are administered.

Visiting time over, the ward now quiet, lights are dimmed.  I’m wide awake.  No chance of sleep right now.  I sit up in bed, reading the Metro online,  checking my emails, posting on Facebook, stretching my legs, circling my ankles, having myself a lying down workout, mindful of the danger of thrombosis (no blood thinning medications for brain surgery) and determined to minimise my risk.

2016-04-18 – Settling in

Wake. Blood pressure. Pulse. Light in my eyes. Questions.

Breakfast: weetabix swimming in milk, toast with butter and jam, and a cup of tea.

Glad I have a bed at the end of the ward by the window. Not because of the view of the hospital roof and the plumbing for the air conditioning, but because I was able to open the window and have a nice cool draught of fresh air.  Hospitals always seem so stiflingly hot, and this is no exception.

Assessing my fellow inmates…  There are six beds in my room.  Next to me there is a young Maltese lad who appears to had a tumour removed. His bed is surrounded by family from first thing in the morning until well after visiting time at night.  Lots and lots of very loud jabbering in Maltese, and curtains pulled around shutting the rest of the world out. Next to the Maltesers is an Indian gentleman – very quiet, no idea what his operation was.  Opposite him was a bearded white bloke with half his head shaved and a nice big surgical dressing where his hair used to be.  He seemed cheerful enough, but didn’t really seem to know what was going on, and was watched over 24 hours a day by a nurse stationed at his bedside.  Next to him (and opposite the Maltesers) was another Indian gentleman who was having MRI scans to try to determine why he was unable to regulate his body temperature. Finally, next to the second Indian gentleman, and opposite me, was an old boy of 86 who had had an operation on the top of his spine.  The whiteboard by his bed said his name was Claude.  Claude was a cantankerous old bugger, pulling faces and mouthing remarks to the retreating backs of nurses and catering staff that didn’t have a ready smile on their faces.  He made me laugh though, and pretty soon we were exchanging irreverent banter and rude gestures across the ward.

Wife arrives with plenty of goodies to supplement the hospital food, which is actually not bad at all.  I ordered an all day breakfast for lunch, and fish pie for dinner.  Both meals good enough to eat.  Bonus!


  • The registrar, checking to see that I had actually turned up, I think, and telling me that I was first on the list the next morning.
  • The anaesthetist, going through the procedure with me, telling me where they would be sticking their tubes, catheters, canulas.  Warning me that he would probably knock at least one crown or bridge off, and expressing concern over my acid reflux and possible complications.
  • The neurosurgeon, Ludvic Zrinzo, telling me that his afternoon slot was now vacant, and that I could have both stages of the operation done one after another.  He asked me if I would be prepared to take part in a little research following the first stage of the procedure (implantation of the two electrodes into the  sub thalamic nucleus of the brain) and before the second stage (implantation of the neurostimulator and connection to the electrodes) which would mean not performing the second part of the operation immediately, but a day or two later.  I agreed to this with the proviso that the anaesthetist was happy for me to have two separate operations, given his concern over my acid reflux.  “No problem, I’ll speak to him, see you in the morning”.
  • Another DBS team member, asking if I would allow an artist to watch my operation tomorrow, with a view to producing an animated film about Parkinson’s Disease and Deep Brain Stimulation. Come one, come all!  What the heck, of course I don’t mind!  So I was introduced to  Martha Orbach, and my wife and I chatted to her for a while and I managed to make her laugh by telling her that the operation was a complete no-brainer as far as I was concerned.  We discussed the symptoms of the disease, and she learnt quite a lot about how skilful we are at concealing them from others – even my wife found out one or two things that I had managed to conceal from her.  It transpired that she had never seen the operation before, so I emailed her a couple of YouTube videos to watch tonight:  one showing my neurosurgeon, Ludvic Zrinzo, performing the “awake” operation – http://youtu.be/1_njABHP1sU (I have watched this one so many times, I feel that I know him personally.  Having now met him, I can confirm that he is exactly as he appears to be in this video – a kind and caring man), and another showing the amazing effects of successful DBS – http://youtu.be/uBh2LxTW0s0.
Me in sexy PJ’s and hospital issue non-slip socks

Visitors gone.  Lights out.  Eyelids heavy.  Sleep.

2016-04-17 – Admitted to the NHNN

Today’s the day…

We have to wait until we are called by the hospital to confirm that there is a bed available for me, so we sit around anxiously until the phone rings just after 11am, and I am told to report to the Bernard Sunley ward and asked for my ETA.  My wife and I are travelling down by car to Fig Tree House – the B&B in Hither Green that I used to stay in some years before when I was working in London.  She will be staying there while I am in hospital, travelling into central London by train each day.  John and Ruth, the owners of Fig Tree House, very kindly allowed her to stay there even though they were having some structural alterations and were officially closed for three months.  We arrived just before 4pm, and I helped my wife get her case into her room, had a cup of tea and a chat with John and Ruth, and visited my old pal, Gerry, in his log cabin at the bottom of the garden.  Then, we grabbed the two small “cabin baggage” sized cases containing my hospital supplies (pyjamas, dressing gown, change of clothes, wash bag, iPad and charger, biscuits, fruit juice, sweets and snacks, etc.) and caught the train to Charing Cross.

National Hospital for Neurology & Neurosurgery

Arriving at the hospital, I was quickly shown to my allocated bed and tagged with my name and date of birth.  Blood pressure.  Pulse.  Shine a light in each eye.  Then there was the first round of the (soon to be familiar) questions: Do you know where you are?  What’s your date of birth?  What’s todays date?

I showered, changed into my pyjamas, and got into bed.

DBS diagram
Deep Brain Stimulation for Parkinson’s Disease

I’m not worried about the operation.  Not even slightly concerned.  My only worry is that I survive the operation, and it doesn’t work!  So much rides on the success of the operation that I cannot even contemplate its failure.