Do you feep like this,i hope it help


#1
My pain - my pains are not your pains.it is not caused by inflammation.Taje your arthritis medication will not help me.I can not work my pain out or shake it off,it is constant.its not even a pain that stays in one place.Today it is my arm,legs ,toes,but tomorrow it mat be in my chest and head.My condition is caused my improper signal in my brain,possibly from pd or due to sleep disorder.it is not well undrstood but it is real

My fatigue - I am not merely tired.I am in a severe state of exhaustion.I may want to help out with the chores and run arooud with the kids but i cant.It isnt because i dont want to.I am most likely pay the prive for stressing my muscles beyond their capability on a good day.

My forgetfulness - I may not remember your name but i do remember you.I may not remember what you asked me to do even though you just told me seconds ago.My problem as nothing to do with my age but may be related to sleep deprivation.I do nothave a selective memory.I am doing my best,

My clumsiness - If i step on your toes or run into you in a crowd im not purposely targetting you.I dont have the muscle control for that.If you are behind me while shopping please be patient im going as fast as i can.these days im taking it one step at a time.

My sensitivities - I cant smell or taste anything or hear much.the ringing and pain in my ears is very tiring so dont make me go out in a crowd all i can hear is bees buzzing. yes i know i sweat even after three showers a day so dont be compelled to tell me.i dont tolerate cold i shake uncontrollaby.My internal thermostat is broken.

My depression Is constant i dont have god days yet.Most days i would rather stay in bed or in the house or die.Severe unrelenting pain can caused depression.Your sincere concern and understanding can pull me back from the brink.Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well.everyday make my symptoms worse and can incapacitate me completely.I maybe able to do a few jobs but i need time to recover.

My good days - If you see me smiling and functioning normally,dont assume i am well.i suffer from chronic pain and fatigue with no cure.medication doesnt stop the pd it only controls it and give you more symptoms.

My speech - is slowly getting lower and fast im trying to talk more clearly but to me it sounds ok.people with pd slip into the background because they are not understood and are sometimes avoided.

Im 54,one year into pd all the above effects me and as done without knowing that i had pd.Ive worried about the past ive worried about the future but im still enjoying today.to my family and friends i am here inside smiling and the same person as before although i cant show it as much on my face i do love you all.

robert

ps please excuse typing the words are moving about.feel free to show to your carers,friends etc it might help

#2
What an absolutely succinct (and in it's way, lovely) summary, resume, etc., of life with PD ~ it tells it all, not from "head knowledge" but from absolute "me" experience ~ (which, in degrees, is different for all of us ~ but the "core emotions" are similar)..

Not all the things happen to all of us.. and those that do maybe to lesser, or greater, degree...but it is the absolute understanding you've captured..how often I've thought 'how can I put this into words?' for somebody.. maybe because they've asked, and for their understanding ~ not to illicit sympathy for me..

So thank you for sharing.. as always, you never know who you may 'touch'.. who just needs to know they're not alone.. so, maybe, keep the thoughts coming!

bursardavid

#3
Thanks for that bursadavid
Things have got worse since I wrote that.
My life is breaking down because. I'm getting blamed for the parkinsons.
It's my fault we cannot keep the foster child long term
It's my fault I drop to sleep
It's my fault I can't stand noises
It's my fault I can't express myself
It's my fault I can't drive
It's my fault I can't multi task
It's my fault I choke at dinner
It's my fault I can't walk far
It's my fault that I can't control my tremor
It's my fault I'm depressed and feel down all the time.
No I need a little sunshine in my dady,with no hassled from friends and family like he's putting it on,nothing wrong with him
He looks alright

You see me a shadow of the I was the me is still there you just have to look a little deeper.
Then you will find I also dont
Like any of the above it's not nice for me but also I need you to help with the familyt not to pull it apart ,we need to fight this
Parkinson's together or it will win
,don't try to get the kids against me, dont bang and shout don't split our,home up,and leave
Lets stick together and fight this horrible disease together .because tomorrow. Is a gift enjoy it.you never Know