10 years since diagnosis: taking responsibility


#1

So, I’ve been on this form on and off for the last 10 years but here I am again signing on - I know now that I have to take responsibility for managing my Parkinson’s because it’s got to the point now where if I don’t, I am going to be severely hampered in my life. Mentally I’m OK physically it’s getting worse and yes I know there are so many things I could do to make myself better. And the rest of my body still seem to protest… At the moment I’m dealing with an infection in my jaw, arthritis in my foot, just had an operation on my hand &I divorce caused by my darling husband not understanding what it is like to have a degenerative disease and how much it makes you want to grab your life and then there are my two very demanding but fantastic boys.

Life is never easy for any of those I know and most of the time I can be quite positive and some people say that I inspired them. God I’m so so so tired and I just want something to happen to make me feel better. And so I decided to join Here again because I figure that if I can talk to you guys we can help each other and hopefully that will drag me out of this pain. Because Self-pity isn’t going to get me anywhere is it?

I am 48 now, I was 36 when I was diagnosed. I have two children, one ex-husband, two cats and one amazing new boyfriend . My challenge is to grab this disease with both mitts & managing into submission


#2

Hi pollymath,
In the ten years on and off the forum I should imagine you have come across a great range of people all with something in common - the dreaded PD.
The one thing that has struck me more than anything else is the fortitude, strength determination, stoicism, and humour, people with this bloody awful disease have.
As an eighty year old (next month) I am forever impressed by young people with PD and how they flex their muscles and get on with life, yet knowing what a bastard Mr Parkinson is.
Like you, mentally I’m fine but physically and physiologically things are exhausting.
Some are due to my age, most due to PD.
I’ve been married for 55 years. It was difficult for my wife to take on board the diagnosis of PD, seven years ago, but she has been marvellous.
You say you can be quite positive and I get that feeling from your posting. By the same token I can’t imagine you indulging in much self-pity.
I have two daughters in their fifties and three granddaughters in their twenties. My granddaughters are gems and fuss over me and give me so much love. I don’t see them very often, two are at Uni and all three quite a long way from us.
I sometimes stay off the Forum for several months but invariably return for updated info. Also I like to contribute to Creative Corner, or just read the postings on it, which is great fun.
So, as you say, grab the sod with both mitts, where it hurts and manage him into submission.
As you know with the Forum replies can be intermittent when I first joined three years ago I didn’t get a reply so I asked the question “is there anybody out there?”
Good luck,
Jules77.

F


#3

An impressive reintroduction!
If you haven’t already tried it, I’d recommend health unlocked, a real kick Parkinson’s ass kind of forum…lots of ideas etc/cutting edge stuff and very easy to navigate! !!
Best, Seamus