HAD TO BE DONE!

ONE MORE!

Maxine, Beccy, George, Penny, Mom, David, Ciara, Innes, Stephen, Stephanie, Nicole and all my family and friends ( TO MANY TO LIST)

I LOVE YOU XXXXXX

SEE YOU AFTER

MAGGIE - MY NURSE

1 DAY TO DBS

This will be my last blog until sometime after the operation because I won’t have access to my lap top. I could probably do it on my phone but I’m not that clever!

I didn’t have a good night knowing I was going in to hospital today and when I did sleep Parky was wanting a scrap, I tried to walk away but he was having none of it.

He did me a favour though because when I woke at 6.30am aching and in pain I knew my decision to go ahead with this operation was the right one.

 

There is a group of very special people I haven’t mentioned up to now. They are the Parkinson’s Nurses. We have all heard of Macmillan Nurses who do a brilliant job caring for people with cancer but Parkinson’s nurses don’t get any publicity so I want to talk about them.

 

I apologise because I can’t remember the date when I first met my nurse but I will never forget how lovely, caring, compassionate, knowledgeable and sensitive she was towards me, my wife Kaye and my condition.

Her name was Maggie Johnson, who I have now known for a number of years. The day we met she visited our home which was a lot more relaxed than going to a hospital or clinic. I think she spent a couple of hours with us talking about the condition, how we both felt, how the children was about it and all the other related issues medication, treatments and the future.

What I found really special was the focus on how my wife and children was in dealing and accepting the condition. People forget that your immediate family is affected almost as much as you and it is vitally important they are involved and informed. Maggie did this so well, I’ll never forget how at ease I felt when she said “It’s not all about you Rob”

 

This was the start of a fantastic relationship with a true professional who knows her job, is always there for us and someone I feel I can talk to about everything. Even when I had gone through my marriage break up and she met Maxine for the first time she was never judgemental and has become very good friends with Max.

As I said Maggie (and I’m sure all the Parkinson’s nurses) are very professional and caring but I got a very special one!

My life with Parkinson’s would have been very different and difficult without this lovely lady and like all the nurses in this world, they are “Angels” who do a wonderful job with little recognition.

 

SEE YOU AFTER

 

Don’t forget Tuesday evening NOBBY !!!

Written Confirmation at last!!!

2 DAYS TO DBS

 

Sorry, missed a day yesterday, I spent some quality time with my loved ones in Stratford.

 

Had a good night (piss up if I’m honest ha ha) up The Yenton with some good friends. It was a shame some people couldn’t be there but I know there were reasons you couldn’t make it.

 

Anyway 2 days to go and YIPPEE, guess what? I got a letter from the QE Hospital yesterday confirming me to go in Monday 23^rd at 2pm. At last I have written confirmation, I can relax and stop stressing.

 

Oh, hang on, wait a minute, a second letter, you wait all this time and like Buses, 2 come at once! I know what this will be, an apology for all the confusion, Feeling Satisfied J

 

So I open it …………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………..that’s enough anticipation dots, I’m trying to give a little suspense to the blog, ok so I’m no Alfred Hitchcock!!

 

You Ready?

 

Well it wasn’t an apology, how silly of me to think this, it was another confirmation letter, and yes you guessed it, to go in Tuesday 24^th at 7am

 

GOD, GIVE ME STRENGTH!!!

 

It’s sorted, I go in Monday 23^rd June at 2pm and Operation gets underway Tuesday morning. I will be indisposed for approx. 8 hours.

 

I read a story earlier about a guy who went through DBS and so he and his wife knew he had come through without any memory loss, they agreed a word/phrase that he would say to her after the operation.

I loved this idea and want to do similar so I have agreed a word with someone for after the op

 

 

 

 

I would also like to do the same with you. So after my op, sometime on Tuesday evening I am going to post a name on Facebook. Then you’ll know the grey matter is intact, well as intact as it is now?

Don’t laugh at the name, this was a very special individual to me and the kids, it was our cat

 

NOBBY

 

Yes I know your laughing, but that was his name and that’s the name I want to use so look out for it on Tuesday. If it doesn’t appear, well I will definitely have forgotten the cat lmao but hopefully not to much more, fingers crossed.

 

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