[KarenClink]

I am new to this site and looking to talk to someone who understands what it is like to have Parkinson's. I'm 45 and have been diagnosed for about 5 years. I just want someone to understand how frustrating it is to not be able to make your body function. ugh!

[girija]

Originally Posted by KarenClink

I am new to this site and looking to talk to someone who understands what it is like to have Parkinson's. I'm 45 and have been diagnosed for about 5 years. I just want someone to understand how frustrating it is to not be able to make your body function. ugh!

Hi Karen,
Welcome! This is a great place to find people who understand your frustrations well and try to help you in many ways. Feel free to share your experiences.

Girija

[lindylanka]

Welcome Karen,
As girija says, there are lots of people here who understand what it is like to have PD with all it's frustrations! And who will answer any questions you have.
Look forward to hearing more from you,
Lindy

[reverett123]

It's a little different here. We're not content to simply struggle with PD. We want to beat it. It makes for a healthy atmosphere. Good mix of ages and experience, too. My first symptoms showed at age 39, for example. Don't overlook the archives. The search box contains gold.

[Bob Dawson]

Originally Posted by KarenClink

I..... I just want someone to understand......

That's a strange thing about Parkinson's. It seems that the symptoms are so varied, and so deeply connected with the self, that lots of people have no idea what we are going through and what is happening to us. And even people close to us can misjudge us in devastating ways.
But also Parkinson's attracts a lot of very kind people; the truly generous ones who don't really understand our disease, but they understand our pain and that it is physical, emotional, spiritual in nature and that it is a nasty Beast but I am still me: that person over there shaking and unable to put on his coat - that's me. I am me with a ludicrous disease, but I am still me, and sometimes I have to remind people of that.
With Parkinson's, we get to see the best and the worst of human conduct. It is not a journey I wanted to take, and it is not a journey I would want anyone else to take, but I have no choice, we are in our canoes headed into the rapids, and we know that somewhere ahead there is a huge waterfall, and we get to see a lot of amazing things as we get caught in the current. It's a life experience, profound and wide and heavy and huge, and as said above, I would not wish it on anyone, but I have met a lot of special people and been through just about everything since I got pulled in by the current. I am not saying it is fun, but it is not nothing. It is real life, very crunchy, very powerful, and it is a great vantage point from which to observe the universe, and from which to take a gentle look at the human race, and all the people, all the guests on earth, one by one, and how they live their lives; and the extent to which some miss the whole point; and the surprising number of givers of care, right out there in the middle of it, day after day; and the best thing we did in one neuro waiting room was we got a big screen and put on Charlie Chaplin movies for the PWP in the waiting room, and then we started a thing about how we are all actors, just PRETENDING to have Parkinson's, just like MJFox. So we do amuse ourselves as much as we can. Parkinson's changes the way you see things. That's quite the side effect.

[Aunt Bean]

Amen Reverett 123.....we have to beat it..... I just read an article on Parkinson's Patient's Support Groups Inc (never heard of them) written by a doctor who has PD and is taking Stalevo and fava bean dehydrated powder and living a normal life. We have to find out more!! Anybody who can find a way for me to contact him or her..please leave me a personal message. I don't have time at the library to read much & miss things.
God Bless you & lead you in your search....all of us, and especially the newly diagnosed!

[Aunt Bean]

know what you mean about being pulled into the rapids..I kayak and have been there....not knowing if I would live thru the next few seconds of the river.....but we must paddle faster!!!! Keep our heads and listen for the banjo music. I have a friend that has a cute t-shirt "I hear banjoes..paddle faster!!"" I love it God Bless Keep focussed

[johanne1420]

Me too. I joined a while ago but have only been lurking til now. Sounds like we're close in age and time dx. Am really sick of tremors and anxiety right now. It's a beast - but there are good days! The best thing - we're not alone!

[KarenClink]

Awesome, good to meet you. I have been looking for a place where there are people who truly understand. My family is so sweet and tries to understand what I'm going through but it's not the same as someone who is there with you. I'll look forward to chatting with you sometime.

Karen

[KarenClink]

Originally Posted by Bob Dawson

That's a strange thing about Parkinson's. It seems that the symptoms are so varied, and so deeply connected with the self, that lots of people have no idea what we are going through and what is happening to us. And even people close to us can misjudge us in devastating ways.
But also Parkinson's attracts a lot of very kind people; the truly generous ones who don't really understand our disease, but they understand our pain and that it is physical, emotional, spiritual in nature and that it is a nasty Beast but I am still me: that person over there shaking and unable to put on his coat - that's me. I am me with a ludicrous disease, but I am still me, and sometimes I have to remind people of that.
With Parkinson's, we get to see the best and the worst of human conduct. It is not a journey I wanted to take, and it is not a journey I would want anyone else to take, but I have no choice, we are in our canoes headed into the rapids, and we know that somewhere ahead there is a huge waterfall, and we get to see a lot of amazing things as we get caught in the current. It's a life experience, profound and wide and heavy and huge, and as said above, I would not wish it on anyone, but I have met a lot of special people and been through just about everything since I got pulled in by the current. I am not saying it is fun, but it is not nothing. It is real life, very crunchy, very powerful, and it is a great vantage point from which to observe the universe, and from which to take a gentle look at the human race, and all the people, all the guests on earth, one by one, and how they live their lives; and the extent to which some miss the whole point; and the surprising number of givers of care, right out there in the middle of it, day after day; and the best thing we did in one neuro waiting room was we got a big screen and put on Charlie Chaplin movies for the PWP in the waiting room, and then we started a thing about how we are all actors, just PRETENDING to have Parkinson's, just like MJFox. So we do amuse ourselves as much as we can. Parkinson's changes the way you see things. That's quite the side effect.

That is such a great description. Thank you for your insight.