Many years of PD
 

The PD forum and the PD community helped me sort through and cope with the life-sentence of this incurable, progressive, debilitating disease. I was helped by kindness and compassion, and I had advice from wise and experienced fellow sufferers. My DX was in 2001, but looking back I now know that I had symptoms already in my early 40s, I just thought I was clumsy and awkward. When I began to have trouble walking and my balance became really wonky I couldn’t deny any longer that something was very wrong with me. PD makes me furious – I feel betrayed, I feel attacked unfairly from behind. This kind of slow torture should not be.
I am lucky to have very slow progression, and I am not held back by PD from doing most of the things I enjoy.
I cook, I play with our grandchildren, I love my husband, we travel abroad, we visit our children and have them all come together to stay with us, which makes us 14 in all, and I write poetry and song lyrics. The one thing I miss most is reading every book on every subject. Reading makes me fall asleep.
A couple of years ago I got really tired of having PD, of talking about PD, of thinking about PD, and I dropped out of the forums, one after the other. And I think the break was good for me. I am used to having PD, I live with it and in spite of it, and I try not to think about it, I think about all other things. I can’t beat PD, but I can fight back by not letting it consume me.
I am ready to talk about it again.
Love to all I know and to all I don’t know yet.
Birte

Hi Birte
 

I am a newbie to this website...and yours was the first post I clicked on. I need a friend too because I am at a loss with this new condition. I suffered 2 years with pains that are unbearable. I too read alot - and came across this thing called PD - I looked for a neurologist who diagnosed me (before that I was told it was my veins, my weight, etc) but now I am told it is PD. Started buying books about it and one suggested a community - thats how I ended up here....I have been put on Neurontin which seems to help - most pain is gone, but some days are worst than others. What do you mean by "progressive, debilitating disease?" - it gets worst? - I really know nothing about it and while the pills help - actually they lasted 12 hours - now I find it more like 8 hours....I still have other problems, like dizziness and unable to stand without holding on - I always feel like I will fall down.

Any help you can give me is greatly appreciated. New friend, I hope....Bubbe219

Apropos early symptoms: For years I thought there was something peculiarly wrong with my van, which seemed to hop down the road like a toad. In retrospect . . . well you can guess what it was!

Atma,
You made your van jump! The most extreme I’ve experienced is when my bed and the house seem to vibrate and my head buzzes. I don’t enjoy that.

Bubbe,
I am certainly your friend, everyone here is your friend already. You can trust in everyone’s sympathy and fellow feelings here. This is a true support group.
The most available information about PD is on the web. Google PD, and a wealth of information is right there, and you are smart to want to know. You need to know as much as possible about PD because PD is our enemy. It is important to fight back even though we will lose the fight in the end.
You have to be in tune with your body. Only you know how you feel and how well the medicine helps you. It has to be adjusted again and again because PD changes with seasons, weather, stress, life style, diet and just because it is PD and unpredictable.
And yes, PD is progressive and incurable, so you need courage and fortitude. Hope helps too, and appreciation for what you can do as opposed to sorrow for what you can not do. You have to work at keeping things working. Good luck to you.