He said something Special - David

7 Days to DBS

Well we’ve reached a Landmark you could say, 1 week left!!

I’m coming up to date concentrating on what’s happening each day, how things are going and how I’m feeling, hopefully it won’t be too boring but I can’t make any promises!

I will skip back on occasions because there are things that come back to me and there are some important people and relevant things I have to mention.

Typical something just came to me that I want to mention. It was something my twin brother David said to me a few years ago now. I was having a particularly bad day with my tenant Parky (the one in my brain)!!

David looked at me and said “If I could take it from you Rob, I would have it without hesitation”

That was without question the nicest most caring thing anyone has ever said to me and something that I’ll never forget.

Okay back to now. I want to thank everyone (Because I didn’t think there would be anyone - Honest) who has read, liked and commented on the blog to date. It means a lot to me that friends and family are supporting me through this because without you I’m not sure I could do it. May get to see it

If you haven’t already, will you start sharing the blogs. This isn’t for me or my ego I’m hoping other people with Parkinson’s may see them and if only one person finds something that helps I’m happy.

Ooh Err listen to me, I sound like I’m on TV “Share the Parky Love!” ha ha

 

So it’s 4.30am June 17^th and I’m wide awake. I desperately try to go back to sleep but there is too much on my mind so 5.15 I give up and get my stiff (Nooooo!) body onto the edge of the bed. Slip the jeans on, get the ZIP fly up (Buttons went years ago) and pull a T shirt on.

Then I do my foot shuffle to the bathroom and have my 1^st and only normal coloured wee! I wouldn’t normally mention my toilet habits but it is relevant for people with Parky’s on certain medication. Anybody taking Stelavo (levodopa) will know what I mean because your pee is BRIGHT ORANGE! and my god does it stain!

What was the pharmaceutical company thinking when they made this Parky’s medication. NOT ABOUT US! THAT’S FOR SURE what’s the common complaint of Parky’s shaking and uncontrollable movements. Okay let’s make a medication that makes the pee bright orange and stains any material.

All I’m saying is if you’re thinking of getting married somewhere hot a WHITE SUIT is not an option!

 

 

So enough toilet talk. I get downstairs (as I said, earlier than usual) I’m normally down here for 7ish. I have to be honest I’m normally feeling sort of okay at this point and take my medication

1 x 100mg Stelavo (Levadopa) – 1 x  10mg Requip (Ropinirole)

2 x Paracetamol – 2 x Ibuprofen these depend on what sort of night I have in bed, I’ll explain this later

 

I make my cup of tea and sit down with my fag. The feeling good lasts for about 10 minutes then my right hand side starts to shut down.

My arm goes tight and numb, so does my leg and my face starts to lose control. This lasts for 30/40 minutes until the tablets kick in then I come back and can have my coffee and fag then!

 

It’s my morning ritual ha ha

 

My day was pretty standard taking my medication every 2 half hours

 

BENEFITS, TEARS & DEPRESSION!!

 

8 Days to DBS

Firstly I want to Thank all my family & friends for respecting my request for no jokes about the circular bumps I may have in my forhead after surgery ………………………………..

NOT!! YOU LOAD OF PISS TAKING B******S

You offered Fridge magnets, Horns, hooks, light bulbs OR wear a wig, grow what you’ve got and have a comb over and various hat options!!

When I realised resistance to the Piss taking was feutile I came up with one myself. My new fancy dress costume for the next 20 years

 

So, I start looking into the Benefit system and what I should/could be entitled to. I don’t want to bore you with everything I had to do I would prefer to concentrate on the main benefit to people with this condition.

DLA – Disability Living Allowance

I was advised this was the main benefit I would be entitled to so begin the process. I requested the claim document from the benefits service and subsequently received the (BOOK!!) sorry form through the post. PARTS 1-32

I am not going to discuss every part/section; I will just mention a few. They want to know about you and your condition and your medication. Then it goes into parts about Walking Outdoors, moving about indoors, toilet and washing needs, mental health, communicating with people, MORE about your illness and disabilities and how they affect you.

For a first time claimant the form is frightening and I am going to give you the most important piece of advice I can:

DO NOT COMPLETE THE FORM ON YOUR OWN!!!!!!!!!!!!!

SPEAK TO A BENEFITS ADVISOR (IN MY CASE AT PARKINSONS UK) THEY KNOW WHAT IS REQUIRED AND THE CORRECT WAY TO ANSWER THE QUESTIONS

I did complete the form on my own because I wasn’t aware of the help available. I did it to the best of my ability, thoroughly and honestly and guess what, yes it was rejected!

I had to appeal against the decision and was asked to attend an Appeals Hearing. All this was taking time and was really getting me down.  It was around this time when not only had I got this to worry about the whole effect of Parkinson’s was draining me physically and mentally. I saw my Doctor and he felt I was very depressed so I was prescribed anti-depressants!

So my wife and I had to go to appeal. This was a very stressful, intimidating and upsetting experience for both of us. We sat in front of a panel of 5 people made up of benefit officials and Doctors. We had to sit there feeling as if we were in a court of law giving information and answering questions from all 5 of the panel.

After about an hour the meeting was adjourned whilst they considered their decision. We was called back in and told our appeal had been declined. We both felt devastated and broke down in tears trying to console each other.

As we were leaving the room one of the female Doctors stopped me and whispered in my ear 2 things. She said you are too honest and you need to get professional advice to complete form with you. It didn’t register at the time but this is when I found the benefits support team at Parkinson’s UK.

I rang Parkinson’s UK and spoke to a wonderful man John Bucknall. I explained everything to him and he wasn’t surprised my appeal had failed. He came up from London a week or so later to our house. He sat with me for hours and completed the form knowing exactly was required!

I sent the form off the following day and subsequently had a reply…………………and it was accepted. Thanks again John

 

 

 

 

 

 

 

MEETING THE SURGEON!!

13  DAYS TO DBS

Sorry I missed some days, Personal life to deal with !!

As well as that, I have to interrupt the history and jump immediately to the present day Tuesday June 12^th.

I am meeting the main man, the bloke I am putting all my trust in to drill my skull, implant 2 probes into my brain and wire it all up to a battery box in my chest. Not exactly Steve Austin the $6 million dollar man but it will do me!

The surgeons name is Mr Chelvarajah and immediately puts me and Maxine at ease by opening up with, “I felt it only right that we should meet before I go to work on you”

He wanted to assess me by seeing my functionality and asking questions about my 10 year history with this condition. It was really difficult recounting the physical changes and medication changes over that period but we got there.

He then went on to describe the day of the operation so I will relay this as accurately as I can. As they say on the News, some readers may find this disturbing – you probably won’t!

I should arrive at the QE at 7am on Tuesday 24^th June

I will be prepared for surgery which will start at 9am and should finish at approx. 4pm  

Before the surgery starts I have to have a support cage bolted to my head and go in for a MRI scan whilst the cage is still attached. The scan showing my head, brain and cage will be used throughout the surgery to direct the positioning of probes to the target area.

 

The surgery starts by making 2 incisions on either side of my head slightly further back from my forehead. Then, 2 holes approx. 20mm in diameter are bored through my skull.

Guide attachments are then secured to these holes and are used to direct probes.

2 electrodes are inserted that carry an electric current through the tip, 2 small destructive lesions are made.

The 2 permanent probes are then inserted through these lesions and directed to the target area. The holes in the skull are then closed using bungs and stitched over.

 

The next part of the surgery involves cutting the skin on side of head and down beneath the ear. The skin is lifted off the skull and the wires inserted. These wires connect to the probes and are run down behind the ear and neck to the chest.

The final part is inserting the battery box in the chest wall where a breast pocket would be, connecting the wires and stitching up.

All the stitches are inside and no clips are used. The head is bandaged for 3-4 days to reduce swelling.

 

All being well I can go home on Thursday 26^th and nothing else is done for a month when I go back to get switched on!!

 

 

 

 

Oh yes I must mention Risks – Can’t ignore them and the outcome I believe is worth the risks

 

2-3% Risks of Haemorrhage or Fitting whilst in surgery. Both potentially fatal

 

5% Risk of infection

 

10% Risk of Spillage – This is where the electricity being fed to the affected part of the brain is to much. The spillage could affect other areas possibly speech, sight or memory

 

SO WE DON’T WANT ANY OF THESE THANK YOU

 

I can accept the risks, go through the 7 hours of surgery and all what’s related to the recovery but

the one thing that really bothers me more than anything is what the surgeon said about the bungs under my scalp closing the holes in my skull.

They apparently will be approx. 3mm above my skull so it is going to look like I have coins under the skin !!!!!

 

No jokes please this really isn’t funny today!!

 

 

IN DENIAL

18  DAYS TO DBS

Well, now I know what I have its time to deal with it……………………..isn’t it?

No it wasn’t not in my case. I was offered initial medication but I refused it saying can we talk again in 6 months. This was accepted by my Doctor and consultant, I think they knew I was in denial and prescription drugs to be taken every day would be acceptance and I wasn’t ready for this!

I was working for myself at this point in my career/life. I started my little business about 1 year ago installing bathrooms and kitchens and basic construction. It was something I had always loved, working with my hands.

How ironic, I am in a happy place enjoying this new career working with my hands and I am given a condition that sooner rather than later proves impossible for me to do this work I enjoy so much!!

I had made this change in my life after working in senior management jobs for about 15 years. Although I had enjoyed my career there was always stress and I did wonder if this had anything to do with my condition? I still don’t know!

Anyhow, moving on I continued to work but it was becoming more difficult to carry out simple tasks at certain times. There was lots of examples where I struggled but one that was becoming impossible was turning a screwdriver!

I only managed until about August 2005, 6 months after being diagnosed and I had to accept I needed the medication to try and control my symptoms.

My life on medication EVERY day had begun

I managed to work for another 2 years or so but eventually it got to the point where I became totally frustrated with myself and frankly to slow to give the customer a completed job in a reasonable time.

So what now? If I can’t work what do I do? I had never been out of work for more than a month since I was 16! You want to believe you’re a decent person, worked all your life, paid your dues surely it was going to be a straight forward process?

Little did I know at this time but I was about to embark on the hardest 12 months of my life fighting the system for basic entitlement.

If it hadn’t been for Parkinson’s UK and a man called John Bucknall (Benefits Advisor) I think I would have given up!!

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.