I never stop learning from this forum. After reading through all the posts on this thread, I am amazed all over again, as if I had never participated here before. Lin's original exploration of maintaining optimism with a condition that, logically, you know will prevail in the end was as familiar to me as if I had written it myself. Somehow or other, we pwp have to develop a two-sided manner of dealing with our ailment. We must be honest and practical in recognising our symptoms, treating them as best we can, and realising that they will worsen in the future. Simultaneously, we must try to live in the moment and make the best use of our time with skills and abilities we may lose; such living only in the present allows us to sustain optimism. And we can add to our positive thinking by surrounding ourselves with comedy and humour.
But it's a juggling act. We have to keep those balls in the air! When one drops, we have a down day or two until we get our sense of rhythm and balance back again.
Thank you, Lin, and all those who responded to her post!
When is it positive and when is it negative? I feel the need to prepare for what is to come. I have sorted out my things and made notes of my wishes, got rid of lots to charity shops. It was while I worked in one of these that I realised how stressful it was for the family . They would bring in boxes of things which should have gone to the dump because it was too painful to throw it away. So for me setting things in good order is Positive.
i think thats part of pd anyway keeping things in order & dealing with stuff straight away so nothing gets on top of you ! my wife always saying i do it!
yes i agree with Gus we need tp prepare ourselves for what will come its like i have said before being dx with PD is a bereavement process pre pd and post pd, maybe not for all but definitely a lot of us.
I try to do everything I want and make the most of what I can do, but I have to be honest and say that the constant 'think positive' and 'live the life you want' messages sometimes make me feel worse when I have bad days (and I can't live the life I want because I really wouldn't choose to have this in my life and it has totally scuppered many of my plans). I'm working on acknowledging all of this, making the best of the life that I have and controlling what I can - but there's so much that I can't control that it's sometimes overwhelming. Not sure where I was going with this really, it just all struck a chord. J
Jackson, everything you say makes sense to me. That's why I describe my attitude toward PD as two-sided. I am generally optimistic, but this IS a progressive disease about which we need to be realistic and practical. It makes changes for us that we'd rather not have.
So easy to say, so hard to do. PD has robbed me of my life. I hate it. It has left me a shadow of my former self, depending on my wife and other people to support and care for me.
No work, no music, no energy, no fun, no mobility, no spark and no hope
How can you be happy when you feel your life has been taken away from you?
I'm really sorry to hear that you are feeling so hopeless at the moment. Please do give our Helpline team a call, alongside emotional support they can put you in touch with a trained volunteer who has had personal experience of Parkinson's and help you find support in your local area. The number is 0808 800 0303 and the Helpline is open Monday-Friday: 9am-7pm, Saturday: 10am-2pm
how long have you had pd mine was very aggressive i was only 36 had to give work up at 41 had dbs to try and keep me at work but every time i tried to work the tremors would come back i was a plumber & heating engineer ,i also got very depressed as every one i knew was at work ,but i gave myself a kick up the ass put more pressure on my nero ,& pd nurses to find the right balance of meds ,got my dbs nero & pd movement nurse to find the best settings ,got my self up started to walk my dog again ! went to my fitness centre started swimming ,sauna ,steam & met a whole new bunch of friends they even phone me up if i haven't been for a couple days ! i used to be 17 .5 stone beer monster now 13 .5 feel good but still have pd but with a smile & hope . still crap on pc tho lol
As only just diagnosed in the last few days I have noticed that the one thing that folk say is to 'keep positive'. Things are only at the beginning for me but I hope I can be as positive as some on here and keep my sense of humour, I don't want to change, I want to stay as me! If that makes sense. At the moment it all feels a bit unreal and a feeling of entering the Unknown. Sometimes I still think, have they got it wrong even If iknow they probably haven't.
Last appointment i had with the PD nurse she asked me if i had found my limits?? As i still keep trying too push myself to be the Person i once was, i was once always very active outside of work & in work, in the last days of being at work one of the ladies i worked with said 'id lost my sparkle', In some ways i have but then there are days when nothing PD is noticeable 'is it all just a dream??' like a dallas plot?. and then there other's when i have reached that Limit.
