Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
We all have good days and bad ones..When acquancies or strangers say that you don't look like you have pd. Clearly not knowing anything people try to dispense advice. I try to educate about some of the misunderstood symptoms or gifts pd has to offer:. loss of sense of smell, facial masking, lowering voice volumn, swallowing issues, pain, ,memory issue, balance issues, drooling, constipation, incontenance
I never feel guilty about having a good day.
I never feel guilty about having a good day.
His head was down and he was napping but also drooling.
Should I be concerned that this is happening in public? It is kind of embarrassing but I know he can't help it.
I tried to give him a Kleenex to catch it.
What should I do or just leave him alone?
Crawl into their skin and look at what is going on. They are glad to see you, but clueless what to say. So, give them a script. How else are they gong to learn? "Thanks... and I really do feel good today. Can I suggest something? Just say I look great and leave it there without the reference to PD. And if I happen not to look so great, tell me the truth... but without any speculation as to why. I really do like connecting with you." Or words to that effect.
When I think back at the thousand crude things I have unintentionally said to good people over my 73 years, I cringe. It is the people who took the time... who cared enough to open my awareness... that I remember most fondly.
I PREFER TO KEEP IT ALL POSITIVE -
SOME DAYS ARE GOOD, SOME DAYS ARE BETTER.
REALLY THOUGH, I THINK EVERY DAY THAT I CAN MOVE, AND THINK, IS A GOOD DAY.
THE ONLY PEOPLE WHO UNDERSTAND WHAT LIVING WITH PARKINSON'S CONDITION IS LIKE ARE MY PEERS. THEN AGAIN I DON'T EXPECT SO CALLED NORMAL PEOPLE TO UNDERSTAND, THERE ARE TIMES WHEN I WOUNDER IF MY TREATING SPECIALIST FULLY UNDERSTANDS.
EVEN IF NORMAL PEOPLE DID UNDERSTAND WHAT GOOD WOULD DO TO US. WE HAVE TO FIGHT AND DEAL WITH THIS CONDITION OURSELVES.
I TAKE FULL RESPONSIBILITY IN THE WAY I MANAGE PARKINSON'S. I EXPECT NOTHING FROM ANYONE AND MUCH FROM MYSELF.
HAVING EXPERIENCED MOST OF THE SYMPTOMS TOGETHER WITH THE SIDE EFFECTS, I HAVE MOANED, GROANED AND LAMENTED, AND IT DOESN'T WORK, NEITHER DOES FEELING SORRY FOR MYSELF, THAT DOESN'T WORK EITHER. IT'S ABOUT ATTITUDE, WHICH LEADS ME BACK WHERE I STARTED.
BE POSITIVE.
AND MAINTAIN A WINNING POSITION.
ALIVEO/STEWART
I think my husband is the only person besides u guys with pd that understands what I got through and even he doesn't realize how dangerous my missteps, jumping arms and legs, rigidity can be.. He blows me off when I talk about selling and getting a ranch.. We have 3 floors. Handling stairs are my scariest part of the day. He says he is going to get me one of those little elevators for the stairs but we have two sets of stairs. Oh well, that is a whole other story.
The slobbering.. I am in 2 12-step recovery programs and we speak in front of people, read out loud a lot and I always have trouble when that happens. I still do it though. I'm not going to let PD allow me to not be of service in my meetings. I sometimes spit on people when I talk. I just say "Hey, excuse me I have pd and it causes me to spit because my saliva is not processed correctly." Please Lynnie just hand him a Kleenex. I would definitely love a Kleenex if I slobbered and was caught without one. Who cares about slobbering after all I am not running for president.