Brutal truth


#1

There is a thread “from a concerned wife” that started by a carer and I didn’t want to hijack it as I am a PWP so have no experience or right to even guess how it feels from your perspective. I thought I’d use the opportunity to introduce myself by giving my thoughts which are both the best and worst way to look at it depending on how you look at it.
Before I start I do not wish to offend anyone I am just attempting to talk honestly and bare my soul.
I bury my head in the sand but in a constructive way. Day to day I refuse to give in and I fight and it’s kept me strong and it’s kept me sane. Parkinson’s robs you of your dignity slowly but surely. You feel guilty for being “ill” of being a burden on those you love. You find yourself wishing you had a “real medical problem”. If you had cancer you could fight and maybe win but you will never beat this.
On a day by day basis you will get up and fight the same fight every day and some days you might even win but inevitably you won’t and that can get you down and then you feel guilty for thinking the above because there are people who have cancer and it could be fatal and how do I dare say the above when my condition is not life threatening.
I’m coming up to 9 years into a diagnosis and 99% of the time I grit my teeth and I have a fantastic life but I vividly remember the time just before diagnosis and for some time after where the pain and burden of the knowledge consumes you and makes you think about it every second of everyday waking moment. That “phase” is very hard to get through and it’s horrible for all concerned
I hope that I have not depressed anyone and I emphasise that I have a fantastic enjoyable and full life. Wonderful and supportive partner and family and a herd of 20 alpacas. Animals don’t care what’s wrong they just need you to feed and care no excuses and that means I have to get on with it!!


#2

i absolutely totally undeniably agree with this post . every day every single day i struggle to look normal. i try not to moan about the pain and the trying to stay upright when i slide to my left subconsciously.people tell me theyd never know i had pd but thats because im gritting my teeth and struggling to look normal… i look so normal that my family forget that i have this and they sometimes expect more from me than they should and i almost always comply because i want to be normal. some people say ahh my uncle had pd for many years as if its fine but im thinking you obviously didnt appreciate that he has had a major struggle for many years. am i normal ill never know but ill keep on trying and my sense of humour xx


#3

Hello Ladies people around us know we have something. The ones around us only get bothered by our disease when we show we are frustrated. The game changer is when our cognitions fails us. We need a cane or walker. When we have the face of apathy. When we are so slow we become an anchor.
I am there. It is at that time when you learn who really are true friends

The true friends seek you out the same as they always have. They know you have limits and they ask no more than you are capable of.

The truth is the longer one has parkinson’s the harder it is to find the motivation to experience life.

The saving grace is those true friends. Tom PWP


#4

After posting this I kept an eye out and no one added anything and I thought it must just be me. I signed out and only came back today.
Thank you for replying and thanks for not putting the anticipated “cheer up” message. It’s nice to know I’m not alone


#5

You probs feel alone at times but you have acknowledged the good things and people in your life so i would guess you dont need or want anyone to say cheer up.good on you.i too have a good life even though im in the process of fighting my way through the most stressful of situations. Bereavement marriage breakup moving from my marital home and a shedload ofother worries.the way i see it is this…i know what will happen to me in the future but its not here yet so im living my life while i can.if my friends are out enjoying life then so am i.the thought of stuck in the house is depressing and I don’t aim to be depressed.thank you for your reply it made me feel useful.xxx