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