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....