Quote:
Originally Posted by birte
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
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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