Reactions when you tell people you have Parkinson's Disease?

I was recently diagnosed with Parkinson's. No one I know has had it or knows someone with it. They don't know what to say except they are sorry. They haven't a clue about symptoms or how one deals with a disease that has no cure. I have just about every symptom and am learning how to deal with it. I really have no desire to socialize until I get it all under control. I am an 81 yr old female who has otherwise been very healthy all my life. Any comments?

Not telling people you have PD is a personal decision you are definitely entitled to;however, you are not going to have that support of friends and family you need during your PD journey. No two PD patients experience PD the same way. Support is so important. Please realize you are the same person you always were before the diagnosis. Your body is changing but that doesn’t change who you are. My life is filled with adapting but I still can do what others do I just do it differently.

@kar907 Pardon me, but if no one talks about PD, how do you know "no one [you] know has it?" As long as We All stay mum, They will all stay dumb. Just a thought.

People can be cruel. I’ve experienced it too when my tremors are bad. I’ve learned to overlook it because I consider them ignorant. I’ve learned people honestly don’t know how to deal with the unknown and tend to avoid me. I was taking taekwondo at the time. To help the kids understand the tremors I just told them it was like when their bodies got cold and they shook a lot. I called it my shake rattle and roll times. People began to respect my dealing with PD because I made light of it in public. Please understand. PD is not easy to deal with. There will be curves given to you by the Parkinson’s but you will learn to adapt to those curves. I do things differently to get from A to B than most people, but I get to B…my way. It’s okay to get frustrated and angry and go through the “why me”. It’s how you handle that frustration, anger and “why me”is what makes you a winner over Parkinson’s.

@gregmt
you should only do the acupuncture immediately after the Epson salt bath followed by completely organic juice this allows the Epson to fully activate. Hopefully you can tell I'm kidding. I too find this forum helpful. I'm 53 and in early stages and experience the same things you listed and I'm trying different things for relief. Also, building up my mental toughness and this forum prepares me for that.

@kar907
I'm sorry to hear about your struggles. Have you looked for support groups in your area? Sometimes it is helpful to talk to others who are also dealing with PD.

@emmit
Thanks Emmit - keeping a sense of humor keeps us from taking ourselves too seriously and sliding into depression and self -pity parties. The one thing I have found that helps the most is pushing through the stiffness and pain with stretching and extensions to remain mobile. It’s not any fun at first but sure helps in getting me through the day.

@kar907
I too have been recently diagnosed with PD and do not/have not ever known anyone with PD. So this disease is a foreign challenge to me as well. I have found connecting with PD support groups has given me the support and a resource of information that I was searching for. It is comforting to find others who can relate and understand what we are experiencing. Share your fears and ask your questions here and you will receive support and answers in return. Stay determined and strong and you will master this disease.

Has anyone experienced weight loss. I have lost about 30 lbs. I believe it could be because I have no appetite and sometimes just cannot eat and feel nauseated. My doctor wants to have my thyroid checked to make sure it's not over or under active. Anyone have similar experience?

@kar907
I also have lost weight, maybe over 20 pounds. Most of the time eating has not been a problem but might have cut back a little. Considering my work energy has also reduced I think under "normal" times if anything my weight might have crept up some.