It becomes frustrating to have to explain my symptoms to the uninformed, almost every time someone doesn't know what it is. Especially, when they ask a question and then become distracted by something and don't pay attention to the answer. Sometimes I feel like I could just mutter gibberish and the person will say. "Oh, I'm sorry to hear that" as they walk away. I realize that these people are ignorant, uninterested, rude, or just afraid of catching something, We need a (maybe weekly)… read more
I get up in the mornings .and apply my makeup up .in get dressed. as if I have somewhere important too be . I don't look like a victim. and I don't want my family or friends to think of me that way. I am very outspoken on the subject of parkinsons. and I have a good sense of humor. I don't have a drink of wine any more when I go out because I don't know what it will look like ...my sin said don't worry about it mum .just carry a bottle of wine with you and people will think you are drunk.gotta laugh
I agree my husband has had PK for 12 + years and just in the last 3 years had finally told his family and friends now he doesn't get embarrassed about his temors.
Wonderful responses! Like Bonnie, I just come right out and say things like this: "Yes, please do help me get down these steps. I have d--- Parkinson's and this is sorta tricky." Just this morning I said that to a nice fellow. He then asked me what I do to deal with PD, which opened up a short conversation. I share info on my Facebook page often. I'm an open book.
@A MyParkinsonsTeam Member - You give such great rants! You should develop a course in "Creating and Delivering Productive Rants". I know I would be first in line to attend.
Your question gave me cause for a LOT of thought - and raised more questions in my mind. Plus identifying an opportunity. i haven't completed my thoughts yet and i don't want to do something half baked, but when i get them organized in a day or so from now, I will share them and hopefully contribute something useful. Meanwhile, thanks for coming up with this question.
the great philosopher Winnie the Pooh said "yesterday is gone, tomorrow is a mystery but today is a gift"...PD is just that, a disease...I have been going to a yoga class for about 6 odd months and the instructor spilled the beans on the "PD guy" in class...slowly but surely I have had most of the class come up to me to say their dad had PD, or a relative has PD, how do you feel today etc etc etc....
I guess the point of the story is that while many people do not know about or understand PD, many people do - you and I need to try and lead by example as best we can and understand that today really is a gift - for some strange reason(s) we both have PD, and in the greater scheme of things, it sucks! But we could be much worst than having this insidious disease...although I wish the good God above had just given me dandruff...or a sore ankle...
Which brings about the PD Joke of the Day...TWO PD folks stumble into a bar...and then they stumble back out again!
I hope this makes some sense and you have a great day - keep on fighting the good fight John