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

@sassytwo WOW! you're a great friend--keep it up be very patient. when you say he feels good helping you not sure if that is handyman type help. I have early stages of Parkinsons, and I told my sons don't ever stop asking me for help. so, my son in another state calls me a lot and asks my advice on home improvement stuff all the time and I love it. I'm not doing any of the work I'm simply giving him advice on drywall or plumbing etc.. even if you have a sister, brother or friend that's not nearby tell your friend--"hey my sister that lives in ____ has an issue with her sink do you know what that could be or how to fix it" and then follow up and tell him thanks that worked great. If his wife has a favorite candy or drink or whatever give her the occasional atta boy. keep being a great friend

@jesslily
lilyanne here, yes, been there, like they dismiss you like its nothing. then talk about their "stuff".

@lilyann
people's reactions are strange. I have not told many people, so I have not experienced the same reactions most of you have. but what I have noticed is MOST people do not have clue what Parkinson's is or how it affects a person. I am learning that most think it's just "some shaking" and they really do not know what to say. They still should NOT just go into their own "stuff", but I chalk it up to nervousness and/or ignorance about the disease. hang in there. Oh, and try not to respond to their "stuff" with wow that sounds bad but hey at least it's not Parkinson's

I am expecting some comments after Carly Simon disclosed her diagnosis. I read about it somewhere and then there were comments including the usual "Oh I am so sorry" etc. One person wrote that she really hoped she could get better soon! That gives you an idea of just how many people don't have a clue. Carly's press release has resulted in lots of articles including some noting the seeming increase in cases. Is it that or just more being diagnosed? Not sure. Now they are tying it to all sorts of causes. I tend not to read any of it.

@emmit
I just got back from visiting my son's family and he has a bunch of home projects that need to get done. He asked my advice for all of them he drove me to the hardware store for materials. I gave advice and he was so grateful. It made me feel great. I said thanks for asking. It was a great father son visit. and I got to do one small project putting house numbers on board for him to hang on the house--it took longer than usual but it got done. It is taking some getting used to not doing the actual work, but I thoroughly enjoyed being with him and talking to him about the projects.
So, for those of you that are friends of PD patients I can say---ask us questions we can still answer them.

I was diagnosed with PD in June and I’m 67. I initially shared my diagnosis openly since my tremors were easily noticeable. What I quickly grew inpatient with was all of the unsolicited advice on how to treat my symptoms I received. Everyone had an opinion on what I needed to do. I constantly remind myself they are only trying to be helpful and truly care about my wellbeing. If I took any of the advice seriously I would currently be juicing, drinking protein shakes, on the carnivore's diet, avoiding gluten, taking 30 different supplements, gone vegan, daily Epson salt baths, doing acupuncture, etc, etc….. If any of these well meaning individuals also had PD I might have listened. I’m currently working with my doctor on a PT and medication routine but still in a trial and error stage on what works best for me. I have good days and bad days. The bad days consist of stiffness/muscle pain/joint pain mostly in my arms/shoulders/chest and neck, sometimes in my lower back and hips. I am trying to best prepare myself for this journey with as much information as possible and find this forum extremely helpful, the unsolicited advise not so much.

@gregmt
I too was diagnosed around your age. Stay connected with your doctor and tell him/her everything. I joined this support group because I had so much fear of the future. I’m doing great at 75 years because I was physically active, I have a doctor who listens and my we have found meds that work. Your journey is day by day and will improve. Ignore those people because they are not walking in your shoes and if you need to, tell them that.

@agentlady
Thank you for your encouraging words. It helps to hear how you are successful managing your symptoms. My greatest anxiety is not knowing what my quality of life will be from here on out. I have learned that my daily exercise routine is vital in managing my mobility and pain. I’m hoping the right medications can reduce the frequency of the bad days. Again, thank you for reaching out to me with your experience and wisdom.

@gregm
You are so welcome. My biggest issue was the not knowing but when you think about it no one really knows the future. There will always be bad days but the good will out number the bad when the meds take effect. I started taekwondo about a year prior to my diagnosis. In 2023 I received my 5th degree black belt at the age of 73. Life is there for the living. You just need to want it.

After observing people's reactions to a former boss's progressing Parkinson's, I decided that I would tell as few people as possible. (Apart from family, I've told only one friend whose mom had PD.)