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