From PAN

"Parkinson's disease is the 14th leading cause of death in the United States, according to the Centers for Disease Control and Prevention's annual analysis of mortality data. The CDC also released data this week showing there was a 4.6% increase in deaths attributable to Parkinson's disease in 2010 (the most recent year for which they have data)."

See CDC report pg.7 Causes of Death

From the day I was diagnosed the message has been that people do not die of PD, they die with PD. Anyone care to share some thoughts about this latest info? I'm thrilled homicides are down, but that doesn't address our issue and still leaves us in the dark.

SherylJ

"I have Parkinson's."
"Oh, I am sorry to hear that. But at least you are in good health."

- told it is not fatal
- told it does not hurt
- told there will be a cure within 5 year
- told it is a chemical shortage in the brain - these pills fix the shortage. It has nothing to do with you and your life, it is just a chemical imbalance
- told that people have it for 15 years, 20 years, so you have lots and lots of time
_ some of this relates to not alarming the person, such as, "Oh you have PD? My best friend had that - diagnosis in January, died in June. So fast, he was gone, and he turned into a vegetable and then screamed for days because of hallucinations. It's the worst thing you can imagine.."
..Uhhh, thanks for the head's up.

Five years later the disease kicks in for real, and you did not strengthen yourself to deal with it, because it seemed to be no big deal, it can't kill you. And then it starts to kill you. It is a very nasty beast.
"Well, his hands shake and sometimes his lip quivers, but the rest of his body is not affected."

YES! that's what really gets to me. I pull myself together trying to join the family or friends at events, and it takes all my energy to just hold it together before I can hurry home and rest. I am definitely declining, but if you were to ask some friends and family members and the various MD's I've been to they say things like, "you look so good" I'm a fairly private person, & want to hold on to some dignity. If I tell them how bad I feel, it doesn't seem to register, because I "look so good" I explain that my life will likely be shorter than if I didn't have this disease, & they say I'm being negative. start suggesting antidepressants etc. There have been nights, crawling to the bathroom, trying not to pee all over myself, when I have prayed to die. Those who have not experienced this just don't get it, and in reality, won't, no matter what we do. I alternate between anger and then acceptance. it is what it is, i know it and hate it!

This is exactly how it affects me emotionally. I still go to work every day, deal with it the best I can all the while knowing inside what it's doing to me. I am in no way the same as I was even a couple years ago. I too have told people the reality, and they say the same thing. Don't be negative. My answer is I'm not negative, I'm a realist.

Deep down inside I feel my soul being eaten away. Bit, by bit, my inner self is being pulled apart. I don't play the piano much. Not that I don't want to, I just can't. I don't have the ability that I had only 2 years ago, so when I do play, it hurts. Not physically, but emotionally. My technique is crumbling away in my hands and fingers. I can't move as fast accurately even on medication.

At work I'm slow getting around now. It takes me longer to setup machines, sometimes to think, and even respond. In my job I have to respond quickly to a situation, and this dreaded condition is now robbing my soul of this too. So what do I do? I just deal with it. There's nothing much else I can do. Suck it up and march on. I'm usually pretty good at that. I put on the smile and keep on going. This lasts until I go to my neuro and she introduces another medication to me. This is like the evil beast has come out of hiding, grabbed at me and pulled me back down into it's lair, not letting me out except for a sneak peak at what it was like before he showed up.

John

I live alone by choice. I show myself to others only when I am at my best. Consequently, I spend a lot of time alone!!

a lot of time alone is a very marked characteristic of Parkinson's.
I asked Hank Williams, how lonely does it get?
Hank Williams has not answered me yet
but I hear him coughing
all night long.

And then there are times when I want to yell at everybody to just F. Off, leave me alone, so I can put the music on loud and writhe on the floor in pain and then get obsessed with whatever, and talk loudly to myself, without having to pretend to be somebody else.
I am sorry I drooled on your carpet. I will take some etiquette courses so it won't happen again.