Its time to admit

I have a rare and progressive neurological disease called Akinetic Rigid Syndrome summarised as "parkinsonism". The major features are bradykinesia , rigidity, slurred and poor speech, organ failure, tremor, dystonia and dyskinesia. 

I have had many brain operations and lots of medications to take. I also have deep brain stimulator that produces between 4 and 12 amps, this is planted deep in the brain the basel nigra. 

To get through a game session is so hard, in order to play I have to increase my stimulator amperage and take my ‘rescue’ meds.

Most sessions I drop my controller up to ten times, or pull out the cable. I am easily confused and struggle with instructions. I have double and blurred vision, the right eye is barely usable, between 15 and 25% vision, bladder and bowel incontinence etc… these symptoms do not tell the full story, there are plenty more and plenty more to come.  

BIRTHDAY THANKS

WHEN ENOUGH IS ENOUGH

WHEN ENOUGH IS ENOUGH - This is my blog, my opportunity to express my self, and in doing so I hope other people may benefit or gain some strength, or at the very least it opens the channel for discussion.

My experiences of how life is with this disease, Parkinsonism (Akinetic Rigid Syndrome or ARS) is just that, no gloss and no bull s....t. I am never afraid to say how things actually are, after all if I can not be honest with myself...well you know the rest!!.,

I have noticed over the last few months more changes, some days are worse than others, for example:- Speach issues and choking - No this time nothing what so ever to do with Ali's cuisine!!!, Dystonia - Now the latest has been excessive chest pain and a real struggle for breath, Diskiniesa - Like the blog title states..shaker maker!! I move around more than Pickford's', odd because I suffer both coming on and going off meds!!, incontinence - Yep, the odd accident, and that mad dash to the lav..I say dash!! more like smash bang oopsy daisey's!!, Stumbles and falls - there ain't many body parts left that have not been banged broken or bruised!!, and a few rather inappropriate issues that shall remain private!!

I do know the meds are taking longer to kick in and then they do not seem to last, so yer in its self a worry. Sure the DBS is helping, but be mindful that the DBS is an aid to assist the meds reach their destination, . I know things are rapidly changing and i am finding it harder to deal with!!. Look, it's not doom and gloom,it just gets to me!! I really don't give two hoots what comes next, but I do really care how things affect Ali, my girls, family and friends.

Anyway, a few days ago I had a scan on my testicles for any odd signs, results not confirmed but looks all good, besides it ain't often I get told that I am good looking, which seemed a strange thing to say with my pants down!! I then find out I have to have a Radial Head replacement of the arm...nout like getting your monies worth from the NHS, (we are truly blessed to have such wonderful medical care). Anyway, my best wishes to you and thanks for reading..

Last year June 2015: DAY LEWIS PHARMACY CHARITY DAY

http://pages.cdn.pagesuite.com/b/a/badc35d4-1c54-409e-95c2-a946f557ce0b/page.pdf

wow been a while... Hi to all, best wishes and hope the days have been good . Summer is it here? answers on a windy postcard....

the nice stuff first...My eldest Jess finally bought a house with her wonderful partner Niall. Exciting times as they begin their journey....good luck to them both. And can some one please tell them that Banco de mum & dad is closed until further notice .....

Had a lovely visit from Bryn and Jan, Bryn (34 years PD) is a real inspiration as he never lets it get to him...brave fella

A friend whom I had not seen for a couple of years came to see me, shocked elated and at the same time sad. He has been through some serious issues having a large tumour removed from his brain. However his attitude and the will never to give up has seen him improve beyond expectations. Inspired..yes!!

Some times you never know what to say, sometimes you just get a bit 'what is the point' type of attitude. Especially when you know this disease is taking you apart bit by bit...!!!

The last few months/weeks have seen some new additions to the illness...again this is not me moaning but telling people the real stuff that happens!!

Things are changing and life is becoming more difficult, more falls, tripping over, balance is terrible. Making mistakes and the every day to day daily stuff is becoming harder. Dropping things,I now choke/cough on fluids, food, saliva etc especially if I am not concentrating... i would say 3-4 times a day!! I promise it is not my wife's cooking either. Concentration levels seem less and i find it difficult to carry out some tasks now. Even as I write this now I am nodding off....so I will break off here and resume in a while.....ahh back.. so where was I oh talking about the boring stuff..
 just seems the good days are getting fewer..... Me I couldn't give too-hoots as the one or two things I like are being eroded away. Hey Ho!! I guess you except the fact that the illness will progress. To be really honest i often wonder whether to switch off the DBS and co.me off all meds..At least I know what the day will be like!!! But that is not fair on my wife and family and friends. But in all seriousness I hate the word CAN'T but to do some basic tasks have become harder both mentally and physically. I am not a quitter, but sometimes you just get pissed with all the crap that this disease throws at you.

Anyway enough of that bull sh**t  ...

GUTEN TAG, BONJOUR, KONNICHIWA, SALAAM, NAMASTE HOLA

I got thinking about the difficulties I have experienced when searching for important contacts. So I have put a list together which I hope will be of help.

THE POWER OF FRIENDS....REALLY IS THE WARM DUVET OF LIFE......

Hello to all and thanks for reading. It has been a few weeks since my last post I thought I would update you on bits and bobs but also share my thoughts.
So, a few weeks have passed since receiving my power chair...and just typical nearly ever day it has rained!! When not raing the sun shines, all you want is to get out...Damn just how cold is it...so really my excursions have been limited. Anyway I have had a raz around and found the experience great. So I am eternally grateful to Mary-Jane, Emily and PDUK. I have been a lot worse with symptoms than usual and in fact I think the progressive bar has moved again. To the extent that my meds just cant keep up as they did, for example they take longer to work and for sure a damn lot shorter time span between taking my Sinimet, I am back to every two and a half hourly intervals with extra madapar dispersal thrown in; wearing 'off' is frequent and especially after or during any activity. eh bien ce sera sera!!!!

Last Thursday I was seen at home by the speech therapist Sandra to discuss my latest problem of choking, swallowing, speech slurring etc. In truth Karen was fantastic and had a huge knowledge of PD. There is little that can be done medically as again symptomatic of the illness... oh JOY!!!..Anyway it transpired that my wife recognized her and it was discovered that she is the sister of my wife's childhood best friend..and not only that her brother Steve whom I met over 25 years ago when we played football... Then suddenly all the memories come flooding back! and you realise time does not stand still and people come and go!!!!...As life swiftly moves on and the years seem to become weeks..You know it when you say a stupid thing like 'oh it was a few months ago' only to be informed that it was a few years ago!!! scary but we all do it.

We seem to wrap ourselves up in our private life duvet..well after all it feels warm and cozy!..But as usual the penny one day drops and suddenly you realise that your mates are few and far between!!! So my thought of the week is about all my friends, because the power of friends can never be understated. Friends boost you and give you something very special. We tend to take a friendship for granted, making it secondary to other life demands.

Friendship is voluntary, regardless if individuals move in and out of our lives, however, we should not think of friendship itself as something easily cast aside or think the friend will visit or call me...because they too may be wrapped up in the warm comfort of their duvet of life.....Contact your friends and say Hello, it's me! I am so pleased that I have...a great boost to ones morale and a feeling of belonging!!!

Take it easy and be the best you can be ....................