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 ....................

PIMP MY RIDE

PIMP MY RIDE

Hello to all and a very happy Easter. Whatever you will be doing, enjoy the time with family and friends. Let that bunny loose!! 

For some time now it has been evident that I am at that stage in my disease journey that I will benefit from a wheelchair, and I received my first chair some months prior, however it came to mind that perhaps a 'push' wheelchair was in fact the wrong mode of transport. This became apparent after a few trips out, and becoming even more reliable on my wife. Being pushed is one thing, but I think you lose that sense of partnership. My vision was to have my wife walking side by side..that way I can see her and know that she cant pull faces at me ..hehehe!

So with the fantastic support from Mary-Jane Hunter, Support worker for PDUK a grant was sought and like the magician Mary-Jane is again she came up trumps....PDUK have provided a grant via the local group and am I so so grateful. So off we go to visit three providers for aides and adaptions and we settled with Independent Living based in Newquay, Tim who is the proprietor found me the right chair and exactly what I wanted. You often go in to these things with lots of fear and trepidation, always worrying what people think etc. But Tim from the first second made every part of the selection, testing etc so easy and not once did I feel uneasy..Big thanks to Tim! 

Tim is local and is experienced in assisting people with the disease, he also offers a 10% discount and most importantly you feel you have made a friend. (http://www.independentlivingsw.co.uk/newquay-shop/4576065641)

So last week I picked up this superb chair, no thrills, easy to use, dismantle and very comfy. Yesterday was my first outing to our local shop aided in case of disaster by Jess and Niall. Wow I actually got out freedom....it was scary at first and boy was I whooped when I got back!!! I struggle concentrating for any length of time and frankly get rather exhausted whenever I do concentrate or merely do some basic chores. So now I know my limitations...but remember going 10 yards is better than going 5!! But I am truly grateful, excited and happy that I have this chair, it will make a huge difference in so many ways.....no what did I do with those dice and the go faster stripes....mmm!

THE HALL OF GREEN AND THE BIG BIRTHDAY SHOCK- 

so another birthday gone, made 49 so not bad I guess, and certainly better than last years big day. Spending any day in hospital although essential ain't really the best way to send your special day. Of course this time last year I was in Southmeade, and although i Had a nice day being home would of been preferred. So I spare a thought to anyone who spend time in hospital on their special days.
On Monday evening whilst munching on my dinner I answered the door, to my absolute shock standing there was Jess and Niall. A pre-planned surprise for my birthday. I must admit i was yes believe this...speechless and a little emotional. But the euphoria of their arrival soon turned to despair..especially when you can't find a glass or mug to use...(joking Jess/Niall)... And Niall happy 25th birthday I hope your day is fun and you get lots of prezzies!!! So I had a great day, some fab presents and for once I had a fantastic day where I could function.

Last week my wife armed with paint brush and a pot of paint decided to paint the hall stairs and landing. Ensuring I was kept away and chained to my PC (not an issue), the paint began to flow. What a nice job she did, a transformation to be proud of. Although I thought that I should of been doing the DIY in truth the mess would of been awful. Ali astonishes me she is an amazing woman who never moans, I am one lucky lucky boy!! Ok time to man uphere!!

Take care all

So If It’s Not Parkinson’s, What Else Could It Be?

http://www.healthmojo.org/2016/02/07/so-if-its-not-parkinsons-what-else-could-it-be/

ME ------- A-R-S

H A A S...should be Ass......

I was asked recently what exactly was wrong with me...In fact we had to complete a huge form titled HEALTH ASSESSMENT ADVISORY SERVICE...What an awful form thankfully Ali completed it and we had lots of data to produce..... Have you had this questionnaire? if so what was your opinion? did you find it easy to complete? let me know because I can't be the only person to struggle with it....I do intend on speaking to the Local MP and hope it can be discussed. Remember how keen our government are on reducing much need benefits for the disabled and their carers. Soon PIP will be here wish you luck on that score...Don't get me started... I digress

I thought a brief explanation may help..believe me to list all of the daily symptoms would need two blogs lol...

So this is my little chest nut...........Parkinsonism, the Akinetic-Rigid Syndromes (ARS)and idiopathic Parkinson's Disease. A neurodegenerative disorder which leads to progressive deterioration of motor function due to loss of dopamine-producing brain cells. The substantia nigra, is mainly affected. Dopamine is the main neurotransmitter made by the brain cells in the substantia nigra. The major features of akinetic-rigid syndromes are bradykinesia (small, slow movements), rigidity and tremor, Approximately 80% of akinetic-rigid syndromes are due to Parkinson's disease. Motor fluctuations appear after 2-3 years of levodopa treatment, and affect at least 50% of patients after five years. Surgery can relieve refractory tremor and dyskinesias, but does not alter disease progression or need for drug therapy.

CHANGE THAT CHANNEL........and now is it worth the hassle...

Last week I attended Southmeade Brain and Neuro Science ward to undergo some tweaking and assessments. I absolutely hate the assessments as I am off my meds. To try and explain what it is like to be totally 'off' is a difficult thing to do, and of course I do not expect anyone to fully appreciate or understand the impact the disease has on me in its truest form.

I encourage you to watch the film AWAKENINGS staring Robin Williams and Robert De Nero. (The story of a doctor's extraordinary work in the Sixties with a group of catatonic patients he finds languishing in a Bronx hospital. Speculating that their rigidity may be akin to an extreme form of Parkinsonism, he seeks permission from his skeptical superiors to treat them with L-dopa, a drug that was used to treat Parkinson's disease at the time and continues to be used). Well in a nutshell that is me in the raw catatonic, rigid 'a warm blooded corpse' now known as Akinetic Ridgid Syndrome (see previous blogs)....Oh I digress....

OK, following last weeks DBS and PD assessment my DBS channels where changed from 'BiPolar to Monopolar. (see Deep Brain Stimulation Programming: Principles and Practice
By Erwin B. Montgomery, Jr., MD).

Anyways I have found the transition very difficult and despite having a very good day yesterday by the evening I was in a right old mess physically, and today is not much better either. You see the DBS only helps with the 'motor functions' movement and suppresses the rigid symptoms and in theory allows for a longer 'on' period.
To be honest with you I am getting a bit peeved and fed up of being 'tweaked', be it trying new meds or a different drug regime or whatever else I am asked to do. I am not knocking the professionals but when you think about it the only person who truly knows the effects of the illness is the person who suffers with it. To see my wife Ali upset when I am having a 'motor or cognitive or both off period' is rather distressing so its not just me that has to suffer. The DBS is working, my physical appearance is better but .... there is always a but!! To be Continued......

www.penpen.org.uk

Frank said AHHH!!

Hello all,once again thanks to every reader and for the comments and likes....

You recall my last visit to the brain center, and the shenanigans that followed the big switch over...well as you know the change of channels really did have a dismal affect, and to be honest with you by the 7th day I was seriously thinking they remove the DBS!! After all what is the point in having gone through hours of major invasive surgery (not forgetting I had to have a further operation), to be tweaked and no benefit. . No point at all I say...! Anyway there is good news..yes really!! I reverted back to my original settings and after a week i am back to how I was prior to 2nd February. Which is not what I call in good fettle, in fact most of the time I feel damn rotten.

Anyway I am not going to moan or feel hard done by, so I have a crappy disease it could be worse I could look like that picture every day!!! So what else can I tell you.. (yes OK I promise not to go on and on and on.....) Well, I had an assessment for a mobility scooter, but not a good idea for me. Then we tried a 'personal traveler' a rather posh name for a disabled power chair. Although very expensive and way way out of my budget the chair was equally as heavy and cumbersome. To dismantle and lift it would of caused my wife endless issues not to mention a potentially damaged back..A hoist I hear you shout...well in essence I agree, however, it would fill the boot space and again extremely expensive. All in all the total cost would be in the region of £5k...Gulp, gasp!! wow there I go again as I faint!! OK, not a good plan so far!!

Then we tried..now you will like this (not a lot) a wheel chair (yes you read it correct) a wheel chair, an every day push wheel chair that has the luxury of a power pack! So I try it and I felt safe, secure and really liked the product...then came the all important question..'so how much will this cost' , thinking of a 'sensible' figure. Hold tight I shall say this once and only once --approx £3k...for a wheel chair with a large Duracell and a few wires!!! Hell it did'nt even have a turbo or go faster stripes! To say I was shocked..yes I was shocked!! Oh no I feel a rant coming on..Err wake up Mr Government and suppliers of aides for disabled. Are the manufacturers and other bodies think disabled people have endless amounts of gold, maybe we all have Rockefeller in our closets..You understand me I am sure!. As always a shock like that got to me pretty mad and I began to think wider in regard to the cost of equipment that is needed in order to improve our quality of life.. I guess until you become disabled and require aides and adaptations you are oblivious how much this stuff actually is to the consumer. Sure there are grants available, but pause for a second and just think of: 1. how to apply and the complications associated and 2.where to look? believe me it is a nightmare. I am in a fortunate position in that I have great support and help from PDuk's Mary - Jane Hunter, Emily from Aged UK Cornwall and family and friends. Imagine being alone...mind blowing!! So the endless search for grants begins...(oliver Twist springs to mind). The guilt trip will soon follow with embarrassment, but you know I say this..or my wife did..Never feel guilty, bad or embarrassed about receiving aides and adaptions, or applying for financial help,. I did but not so much now, but I know I can't afford the luxury of making a better and easier life for me and my family...and how many like me's are there across the country!!!! Until next time that all folks....