GOOGLE – CONFUSION – REALITY

 19 DAYS TO DBS

So that’s it then I have officially got Parkinson’s so I join the other 120,000 unfortunate people in the UK with this F****N horrible disease.

So after the bombshell of being told you have a condition you don’t know anything about, what do you do?

Well in this modern age you do what everybody does YOU HIT GOOGLE for all the answers!!

You read everything you can and after you’ve exhausted every medical web site, every Parkinson’s page and every other web site you can find, at last your educated, happy and fully understand your new condition……………..Don’t you?

NO! YOU’RE MORE CONFUSED THAN WHEN YOU’RE STARTED, I BET YOU’VE ALL DONE IT

It took a couple of weeks to decipher all the information and get the answers and basic understanding of the condition that had chosen to invade my body.

I hope you don’t mind but I feel it’s important to list the very basics

Parkinson’s is a progressive degenerative neurological condition – It continues to get worse, caused by a deficiency of a chemical in the brain called Dopamine.

Medication is the main treatment, drugs restore the dopamine levels lost in the brain and basically mimics its actions. A relevant note to make at this point is that Parkinson’s medication is only effective for a period ( I was told between 10 – 15 years )

Without dopamine your body and its movements slow down and it takes longer to do things. This can make everyday activities, such as eating, getting dressed, using a phone or turning a key sometimes impossible!

The 3 main symptoms of Parkinson’s are tremor, muscle stiffness and slowness of movements. But not everyone will experience all of these.

Tremor is the most obvious to people. When I say tremor this can be anything from fingers twitching to arms and body shakes about uncontrollably.

My symptoms (other than at the start with my twitchy thumb) have always been the muscle stiffness and slowness of movements and I will talk more about this later.

15 MINUTES TO CHANGE MY LIFE FOREVER!!

TRAPPED MUSCLE/NERVE IN MY SHOULDER ( I THOUGHT!! )– NOVEMBER 2004

I went to see Doctor who gave me a basic examination. He suggested he was going to refer me to see a Neurology consultant at the hospital. Even then nothing registered with me, actually call me thick, but I thought neurology was muscle problems!! I convinced myself I had trapped a muscle and or nerve in my shoulder. This explained to me why my arm wouldn’t swing and my twitchy thumb.

I didn’t know at the time of referral but my Doctor had suspected Parkinson’s!

FEBRUARY 1^st 2005 – THE DAY I WAS TOLD I HAD PARKINSON’S

24 DAYS BEFORE MY 42^nd BIRTHDAY

QUESTIONS TO PONDER:

1)      How long does it take to diagnose someone with Parkinson’s’?

2)      What is Parkinson’s?

Here I was sitting in front of a Neurology consultant.

This is how it went.

A few simple tests  - play the piano with your fingers, touch your nose, check reflexes and walk 5 steps – 8 MINUTES

Consultant explanation of Parkinson’s –I would describe it as a fag packet drawing of a brain showing Dopamine deficiency at back – 3 MINUTES

Has anyone else in my family had PD? No I said – Well it’s not Hereditary

Have you suffered any serious head trauma? Yes I said – It’s not that

What causes it then I ask? We don’t know  

Sorry I nearly forgot, he asked me if I smoke? I said yes. He said it’s a proven fact nicotine helps with the condition. I thought there’s a result! – 4 MINUTES 

ANSWER TO QUESTION 1 – 15 MINUTES

NO X RAY, NO MRI SCAN, NO CT SCAN, NO DAT SCAN, NOTHING!!!

This was what I knew about Parkinson’s on  this day:

Only old people 70 plus get Parkinson’s

They shake, fingers & hands mainly

Stutter Speech

Muhammad Ali & Michael J Fox had it

That’s it, my complete knowledge of my new condition!

MY ANSWER TO QUESTION 2 (WHEN I WAS DIAGNOSED)

I felt underwhelmed with the diagnosis, but didn’t know any better. I may have had all the scans years later which confirmed it was Parkinson’s but although I felt underwhelmed by the consultant I can’t argue HE WAS RIGHT WITH THE DIAGNOSIS!!

I SORT OF FELT EVEN IF HE KNEW A FEW TESTS AND EXAMINATIONS WOULD HAVE PREPARED ME A BIT BETTER FOR THIS BOMBSHELL

So I walk out the room, 41 years old with Parkinson’s. Haven’t got a clue what it means, my ex wife Kaye worked at the hospital, I went to the department she worked in told her and we both broke down in floods of tears!! Don’t know why as I said we didn’t know what it was! I think it’s that word isn’t it, DISEASE !!

That’s why the society are now called Parkinson’s UK not Parkinson’s Disease Society.

 

ARMY CADET – GET A MARCH ON!

In my first blog I mentioned some important numbers and people who are very important to me.

There are 3 more people who I have to mention before I go any further because they mean the world to me.

My Wonderful Mother

 

My 2 Brothers, Steve on the right and Dave my Twin on the left  - Yes my twin, I know we have often been referred to as Arnold Schwarzenegger and Danny DeVito!!

 

How it all started

Having a family holiday in Cala Bona, Majorca summer 2004. I was enjoying a walk along the sea front with my wife at the time, Kaye.

41 years old, young to me, but if your under 30 reading this, Old!! Lol

My right arm wasn’t swinging it was hanging by my side? I tried to correct it, like I was taught when marching in the army cadets. When your left leg goes forward so does your right arm, then your right leg, your left arm, how difficult can than that be?

I tried, it wouldn’t work! Why? I didn’t know but I can tell you how it felt. Try walking/marching but when your left leg goes forward move your left arm and the same with the right. Feels weird/wrong doesn’t it, well that’s how it felt.

I put it out of my mind, ignored it until after the holiday. I continued trying to ignore it for a few months but knew I had to go and see the Doctor. By now I also had a twitchy thumb on my right hand.

FRUSTRATION DISEASE – OTHERWISE KNOWN AS PARKINSON’S DISEASE - DBS SURGERY MY JOURNEY

Before I start this Blog I want to mention these important numbers in my life today, 51 / 10 / 24 / 3 / 1 /0.2

51        -           My Age - Young I know!

10        -           Years I have had Parkinson’s

24        -           The date of DBS Surgery 24^th June 2014

3          -           My 3 Beautiful children, Rebecca, George & Penny

1          -           The very special woman in my life, my fiancé Maxine

 0.2      -           Ralph, our Border Terrier 0.2 because he's only little lol

21 DAYS BEFORE THEY GET IN MY HEAD!

Have you ever thought someone is getting in your head? Well this is the real thing for me

On the 24^th June they go in! When I say go in that’s to perform the operation. DEEP BRAIN STIMULATION SURGERY. I think the words DEEP & BRAIN are the ones that sound bad……………………No that’s not true!……………………….They make me shit myself. Am I scared? I'd like to say no but I’d be lying. I know all the risks and I know they are low but they are there in DBS and the general surgery.

I know I am the one having surgery but the fact is I will be under general anaesthetic and not have a clue what's going on or any worries.
The people who need support are my family and friends not me so make sure you all look after each other on the day!

You have to look at your whole life and most importantly your quality of life and for me that's right now. I am 51 and if I have to live with this horrible, frustrating and annoying condition I want to accept anything that will give benefits now. If DBS gives me 5-10 better years, I’m taking it now Thanks.

Let me put the DBS surgery in layman’s terms

1)      General Anaesthetic – Knock you out

2)      Stabilise the head in preparation for surgery – Bolt a Meccano set/frame to your skull. I hope the kit is a bit more modern than this!

3)      Make 2 openings in the head for electronic probes – Drill 2 holes in skull

4)      Precisely insert probes to brain – Put 2 wires in (DEEP)!!!!

5)      Connect probes to wires and insert wires under skin from head, behind ear, down neck to stimulator box placed under skin in chest area – Wire me Up

THAT’S IT JOB DONE, TAKES BETWEEN 5-10 HOURS, SIMPLE

Obviously I'm making light of the surgery but it helps me to prepare for this. If any of the surgeons read this I hope you are taking it serious...............oh and please make sure you have a new meccano set!

In my next blog, I want to talk a bit about my history with Parkinson's, how I found out, how I was told, living with it and then I will concentrate on my DBS Journey.