DBS Surgery is NOT a cure!

4 DAYS TO DBS Surgery

Well the QE Hospital admin staff certainly is surpassing all expectations. They should be awarded the UK Title as

“THE MOST DISORGANISED USELESS DON’T KNOW THEIR ARSE FROM THEIR ELBOW DEPARTMENT IN THE COUNTRY”

I have lost count of the number of phone calls now from various people at the QE. Everyone telling me a different day or time I should go in. We are now told to go in on Monday 23^rd at 2pm? I’m not holding my breath just yet, there is while to go!

OH and still nothing in writing for the biggest hospital appointment of my life!!!

 

I want to talk about DBS surgery and explain what it is actually going to do for me. This is important because I have spoken to people about it who think it is a cure – IT IS’NT but everything will be explained.

Parkinson’s Disease is a debilitating, degenerative condition and currently there is no cure. There are many types of medication that can control, stabilise and help the condition. Unfortunately because the condition is constantly degenerating the medication generally only has a certain working time span (I was told about 10-15 years)

A very important point to make here is never forget the amount of people, organisations, charities and time being spent on developments and research to find a cure. And if not a cure at this stage exciting new medication, surgeries and treatments.

 

WHEN I WAS DIAGNOSED I WAS VERY NIEVE AND DIDN’T CONSIDER ANYTHING THAT WAS GOING ON OUTSIDE OF MY WORLD. I THOUGHT MY LIFE WOULD BE OVER IN 10-15 YEARS!!

LOOK NOW I’M GETTING SURGERY THAT WILL MAKE A BIG DIFFERENCE, HOPEFULLY GIVE ME A BETTER QUALITY OF LIFE WITH MORE STABILITY AND LESS PAIN

 

Deep Brain Stimulation Surgery (DBS) I am not going to attempt to describe the technical detail of DBS, should you wish to you can get very detailed explanations on Parkinson’s UK or Parkinson’s Disease Foundation web pages.

 

The surgery in my case and I see it is a replacement for the medication I am taking. My medication has increased over the years as its effectiveness has worn off. 2 years ago I was taking a stalevo tablet about every 5 hours, I am now taking them every 2.5 hours and sometimes less.

The problem with this is my day is peaks and troughs, no stability in the control of my issues through the medication. If you recall I discussed my ON/OFF Times earlier.

 

If I take a tablet every 2.5 hours and I am awake for 16-18 hours a day that breaks down to 7 x 2.5hours.

If I get 1.5 hours in each x 7 that means I have 10.5 hours of ON time in my 18 hour day

 

As I said the problem is it can be all over the place. The surgery we hope not only replaces the medication (maybe not completely) but stabilises your condition. We are also hoping the OFF time will reduce by circa 50%.

This could mean from my 18 hour day I could get 14 ON hours which would be wonderful. The shortfall would be managed with some medication.

 

Hopefully that has explained why the DBS surgery is a good option for me and worth any risks that are associated with it.

 

BIT OF FUNDRAISING

5 DAYS TO DBS Surgery

Well, I said yesterday, I was hoping to receive the letter confirming the operation details for next Tuesday. It didn’t arrive but I managed to speak to my new Parkinson’s Nurse Jamila this morning. She explained there are a few issues with administration currently.

The good news is she said it’s definitely going ahead and everything is booked. She is going to call me on Friday with times etc.

I came off the phone happy everything is set, and then I felt blind panic, REALITY HIT ME, ITS HAPPENING, WE ARE ON! I don’t know if I should laugh or cry SO I’m doing both!!

Funny isn’t it, you want something so much and when you get it you begin to doubt it ???

I said I might just go back at times, well this is one of them. I want to mention a fundraising event we did in May this year.

When I heard I was accepted for surgery I decided I wanted to organise a fundraising event for Parkinson’s UK.

The reason for this was firstly because I had been accepted and it was 10 years since my Parky’s journey started. (If you’ve been paying attention 2004 in Majorca)

Parkinson’s UK had helped me a lot over the years, firstly with my benefit applications and for general advise or just to talk to.

I know it’s a cliché but I wanted to give something back.

The last time I raised money for them was 8 years ago when George (my son) and I did a 13,000 feet Tandem skydive when we raised over £1000. If I can find the DVD I’ll try and get it on Blog!

I decided to organise the event at my local pub The Yenton. I got a mate, Paul Kelly involved, and we sorted the room with Mick the gaffer. We put on a DJ and Karaoke and sold entry tickets.

On the day we had a raffle, an Auction and a few other money raising ideas. The pictures tell the story!

This was how we advertised it and we sold the 120 tickets within a week!

THE YENTON

CHARITY EVENT DISCO/KAREOKE TO RAISE MONEY FOR PARKINSON’S UK

SUNDAY 20^th APRIL 3PM

Tickets £5

Rob Dyer has had Parkinson,s for 10 years, diagnosed at just 41.

It is a debilitaing, degenerative and frustrating condition that can effect anyone at any age!

Rob is having Deep Brain Stimulation Surgery this coming June at the QE Hospital, Birmingham. He wants to give something back to the charity that has helped him.

ANY SUPPORT YOU CAN GIVE WILL HELP PARKINSON,S UK IN FINDING A CURE

                                                                       Contact Rob or Paul Kelly for Tickets                                                      

 

PICTURES OF THE DAY

 

These are the Dancing Girls! (The Glampussies) L to R Bernie, Yvonne, Maxine, ME, Caroline & Becky. I took the opportunity of a photo before they began strutting their stuff!

 Me with my eldest daughter Becky and son George

My 2 lovely girls Becky & Penny

 Having a good time!

Beccy & Paul who really helped me to organise the day - Thanks you 2

Elozabeth (my 3rd Daughter) me & Maxine - Oh and Paul getting in on photo!!

AND THIS IS WHAT WE RAISED £2,036.97

 

THANK YOU TO EVERYONE

 

MY BLOG HELPS JEANNETTE

6 Days to DBS – I feel a couple of Blogs today you lucky people!

 

Well, this time next week it will all be over, my operation that is!

 

Today has started as it did yesterday, awake at 4.30am again!! At this rate I won’t need a general anaesthetic next Tuesday, I’ll be that knackered I think I’ll sleep through the 7 hour operation!

 

I am desperately waiting and hoping for the letter from the QE Hospital confirming everything. I know this is one reason for my sleep deprivation. There is always a chance with the Neurological Brain surgery team something could happen, as in priorities and my date gets moved. I really hope not I couldn’t go through this again!

 

Anyway tablets taken at 5am, cups of tea and coffee and fags done and 25 minutes of off time passed. I’m operating as normal again.

I mentioned yesterday about taking Paracetamol & Ibuprofen and I said I would explain why I take these some mornings. Normally I sleep quite well and deep but Parky does play a nasty role during the night on occasions.

I am lucky because I sleep through it but we occasionally have a serious fight where he attacks my limbs and muscles pounding me. To defend this I twist, turn, tense up and only realise how much he has hurt me when I attempt to get out of bed and this is when I need the pain killers.

People with Parky’s will also recognise a night with a continental quilt that feels like it weighs a ton!

 

7.15am Starting to struggle, arm has gone limp and face has gone! Waited until7.30 took tablet. Bad off time 45 minutes before able to move arm comfortably!

 

I went on FB and looked to see how yesterday’s blog had been received. There were lots of likes, shares and comments and a particularly poignant comment that I have to share.

Jeannette is a lovely lady I used to work with. I knew she was following my blog but when I saw this, I was overwhelmed that my blog had impacted on her like this!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10am Here we go again. Typing away hand just stopped,  tongue and bottom lip dropped!! So frustrating, time for a drink and a cig. Not that bad 20 minutes off time.

 

You may be wondering what I mean by OFF time. For people with Parky’s and the medical staff, doctors, nurses etc. OFF time is when the condition is effecting you in whatever way you suffer, stiffness, numbness, shaking, dyskenesia, freezing etc.

Your ON time is when medication has kicked in and your feeling okay

 

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!!