Hello, I'm new to all this on several counts. I've never dabbled in any social media before and was diagnosed with Parkinson's last year. Looking back it's pretty clear I've had it for a while, especially the symptoms not generally known to be related to the disease. I only found out about those after looking up Parkinson's uk In a way it way almost a relief to have an answer to all those things and the general feeling of "Not feeling quite well but not actually ill". I don't feel I have to "plough on regardless" so much now.
All the information on this website, and reading about others with the disease has been really helpful, made me feel less "alone". Family have been great but hearing from others in the same boat helps enormously.
In telling others of my diagnosis I have encountered a range of reactions, some not very reassuring.
The first being an friend of many years. She said "Oh my Dad had it. The nurses and doctors were wonderful - when he couldn't swallow any more he had....." Seeing my horrified expression her partner dragged her away. This was when I was just getting used to the diagnosis and had not learned much.
The second a customer who noticed my tremor asked outright if I had PD. I confessed I did have it. She said "Oh my friend has it. It got so bad she couldn't walk down the road on her own. Then she had medication and got her life back. She's off to Icland on her own next week. Don't you worry, you'll be fine." With that she patted me on the hand and left. I could have hugged her.
More recently Someone said of Reg's got that, you know Reg on the corner? Went into a lovely BUPA home last week.....I had felt fine up to that point but cut short the dogs walk and went home to brood.
This sounds like I spend all my time broadcasting the news of my diagnosis, I haven't told many but just wanted to say that peoples reaction makes such a difference to how you feel doesn't it.