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

@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.

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.

@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 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.

@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

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

@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

@206452751079 me too. My good friend’s husband has Parkinson’s and I want to learn more about the disease and how to support both of them. This past year I have noticed great changes, cognitively and significant weight loss but improving with new medications. I suggested twice that my friend may benefit from a caregivers support group or that Her husband might, but she is not interested. I asked if she would mine if I looked into it for myself so I could better support them both. Mostly, I plan caregiving escapes and listen and find that her husband and my friend too, enjoy when I stop in . We live in the same condo building and have mutual friends. Our small gatherings seem to be a comfortable and enjoyable outlet for socialization for both —with my friend being able to retreat home or bed when tired. Or he can stay home and my friend can come as close by. It is difficult to leave him for long periods. I know she gets so very frustrated—even as she knows what is going on. He was told he can no longer drive and has lost so much ability to complete tasks that used to be easy peasy. Once a B52 pilot. still engaging conversationist and wonderful quick and quiet humor that I find enjoy immensely. He feels good when he can help me in anyway— so suggestions on ways to set him up for success to be useful appreciated. They are planning a 10 day European river cruise and I know their is apprehension if this will be doable— cane but I think will need a walker. I suggested a porter andUS airport had wheelchair etc. They fly 1st class and are experienced travelers. Suggestions! ??

Hello @southwest

I see that you were starting a follow up course of PT. How are you doing?

@206452751079

Good question. For me, my issue is usually before the event, i.e. the anxiety how I will walk from the car to the room or the the chair. Sitting in a chair is particularly helpful so I don't have to multitask and just can focus on talking. The less I have to worry about the better, so if you streamline the logistics, it should help. Once I am participating, things tend to go well.