DBS #5

….as requested, by popular demand

(and again courtesey of Dr P Marazzi)

Not often you get to see even part of your brain.  I am absolutely fascinated by the whole process and having these photo’s makes me ask even more question.

I do regret, though, not having had a team photo taken, but then I guess we were all a little pre-occupied……maybe I should see if we could restage it??

DBS #4

Been at the Atkinson Morley again today for another reprogramming.  When I got home (finally) I found I had received another e-mail from Dr Marazzi containing more photo’s of the Op that I had requested.

I was going to attach them to this blog, but on further reviewing, I decided against it, for the moment….as…..as you might expect they are a little more graphic and not for the squeamish.

But…perchance you happen to bump into me I will happily show them to you with alacrity.

More soon…..

DBS #2 – Doctors

Naturally I woul like to thank all those who helped me through this particularly challenging time.

So I thought I’d mention a few names:

Dr E Pereira – who carried out the operation, so very expertly.  I understand he was head-hunted by the Atkinson Morley from the John Radcliffe in Oxford as the former wants to become the UK centre for this sort of thing.

Dr D Paviour – my Consultant Neurologist at the AM.  Who put me up for this after my first visit and who’s help is ongoing

Dr S Stapleton – One of the senior neurosurgeons in the UK.  A thoroughly decent and nice chap.  Who by co-incidence I knew from previous occasions as my last house, in Ockham, I bought from him.  He was operating in another Theatre the same day and came in several times to check up on me

Dr P Marazzi – My old GP when I lived in ~ Ockham.  Who to say he is a very keen photographer  would be a somewhat massive understatement.  When he knew I was having this procedure was very keen to photograph it (on his day off – something of a busmans holiday).  It was nice and resassurring to have a ‘friendly’ face there.  Photo’s later

Dr G Warner – my ‘usual’ consultant, who first diagnosed my Parkinson’s all those years ago and then sent me along to the AM to see how else they could help

All of them lovely men

Of course there are many, many others.  But more of them later

DBS #1

This is, probably, a series of posts regarding Deep Brain Stimulation (DBS).  An operation I have recently undergone and which has rather pre-occupied me for the past 6 months or so.

I measure of its success is that I have now found the time and energy to restarts this blog!!!!!!

Last night I spent (rather belatedly) a couple of hours investigating and readng up abot DBS.  I particularly wanted to find out when it was first performed and other pertinent facts.  In found good old Wikipedia gives a pretty good general insight.

First performed in 1987, it was licensed as a treatment for some Parkinsons patients & symptoms by the FDA in the USA in 1993 (and further improvements were approved in 2003).

Since then, worldwide, it is estimated around 20,000 people, have had the treatment.  It was developed out of clinical study into the treatment for drug abuse and then developed to treat a number of neuropathic illnesses and is very much ongoing.

Due to the cost and necessary expertise in performing this operation, it is only carried out in a few places in the UK and is very much dependedent on age, health, PD symptoms and numerous other facts.

So I am lucky

..and the long term prognosis is good!

Not for love nor money

Tuesday night (Junior) session was quite sad at the end.

I’m to lose one of ‘my’ new students, who has shown quite a lot of promise in these past few months.  He was a bit of a live wire when he first came to me many, many months ago.   But has since settled down and is a delight to teach.   He is so cheerful! and his father is a lovely, caring (nay…doting) father,  who thinks the world of his son and is so positive and encouraging.

Sadly he informed me that they can no longer continue coming to classes as they are both having to relocate back to Thailand!!

I only found out last night that his wife has been denied immigration rights to the UK and cannot join him here!!  Despite being married for over 12 years and having had two children together (1 boy 1 girl), he is being forced to return rather than live apart.  The family has been apart for over 6 months now, whilst he has bought  house and secured a job (his last job in Thailand, I understand came to end of the contract some time ago and he had always intended in returning to the UK).

Whilst he has been here with his son (who has dual nationality) his daughter (also with dual nationality)  has stayed with his mother out there.

I realise there may be quite legitimate and sound reasons behind this decision but all the same it seems really sad that they are being denied the chance to live here together as a family!

There is something wrong with the (human) World…..

 

FIZZLE

Bit disappointed today.  What had promised to be a big day turned out to be more of a damp squib!!

3 weeks ago I underwent DBS surgery at the Atkinson Morley in  London.  Before I was discharged my battery ‘implant’ was turned on at a very, very low level.  Today I was due to go in for the ‘major unveiling’; or as I told everyone (and is listed in my diary), the great ‘turn on’.

It was not.

I suffered again this morning by trying to stay, as requested, off my medication as much a possible, prior to this appointment, so that we (the Doctors and I) could see the improvement that this surgery would achieve. Sadly the results were not as impressive as I had longed for.

One of my younger brothers’  drove me in (as a last-minute replacement…driver-wise) and I expected to be in for a good few hours (as I had been informed).  So it was no surprise to find that I was feeling pretty rough by the time I was dropped off and attended my appointment.  After the usual pleasantries the Doctor reprogrammed me and changed my medication regime.  Whilst still at a very low setting he did ramp it up a bit, and had me walking up and down the corridor, again and again and was happy with my progress.

But I was disappointed.  I though the improvement would be much more marked.

But then again, I realised that this would be done gradually and that it was my expectations that were getting the better of me.

So, I go back in two weeks for another (longer) reprogramming session (and, maybe, even get to take a ‘remote’ home with me) but also to settle down into the reduced pill intake.

I remember now that I have to be slowly weaned off the medication.  It cannot be done quickly and the process of reducing the meds whilst increasing the output will now take about 6 months.

So today was more of a Fizzle rather than a glorious turning on!!!

We shall see what tomorrow brings when I try the new regime from scratch!!

 

 

BACK

Its been a while (a couple of years in fact), but Parkinsons has not been kind and typing Blogs and the like has been a fun but time consuming chore.

However

much has happened since then…

I have, at the momemt, separated from my wife and moved into a flat.  Sold my previous property (my wife and daughter) now having found something elsewhere to live.  David Cameron, I understand, is no longer Prime Minister but has resigned? Therese May is now PM?  The UK voted to leave the EU??!!!  Donald Trump has been elected President ……and most of all I have undergone a brain surgery technique to help deal with my condition.

The latter was a 5 – 6 hour operation the success of which I will elucidate further at another time BUT the fact that I have even shown an interest in this Blog could be construed as a positive step and a move in the right  direction.  We shall see.  But just to finish this post and make quite a few green with envy I have added these couple of pictures…that helped me get through a particularly difficult time….

PERFECT

….and to follow the last post, and in conjunction with it.

I recently attened a Level 2 Coaching in Taekwondo Course run by the NGB, British Taekwondo.

It was a good course, with excellent tutors and pleasant Taekwondo associates (fellow Instructors).  There was much debate and discussion and one the Tutors (a very nice guy who’ve I’ve met on many occassions) made a very up-beat statement.

He said (especially when having to talk to non-Taekwondo people – funders/councils/local officials)

“I do the best sport there is!”

(and I won’t get drawn, for now, into the discussion about ‘sport’ and ‘martial art’)

He went on:

“everything you do in any other ‘sport’, you do in Taekwondo!”

“You can’t name an activity that isn’t served by training in Taekwondo!”

“I do the best sport in the world”

Flexibility, Strength, Focus, Meditation, Concentration, Aerobic exercise, Reactions, Balance, Poise, Anearobic exercise, Courage, Memory, Agility, Adaptability, Motivation, Competition, Relaxation, Breathing technique, Massage/Manipulation/Acu-pressure, Health, Posture, Right/Left brain dominance, Ampidextrocity, Logic, Problem solving, Cardiovascular exercise, Respiratory exercise, Hormonal control, Empathy, Sympathy, Linguistics, Philosophy, Ethics, Morals, Self-Control, Etiquette, Endurance, Perserverance, Modesty, Humility, Indomitability, Spirituality, ….to name but a few…

…Oh! and you can learn to kick-ass too!