As of the present and the previous question, I’ve expressed to all my friends not to say those cringe worthy words, like inevitable, decline, predictable, certainty. So they respect that very well.

Well, I wish they wouldn’t paint such a fatalistic future for me. It could, this could or could not happen actually. And it depresses me to hear about it, but mostly this doesn’t happen.

Most people associate Parkinson’s with tremors, but I don’t have it. I have more of the rigidity, so people wonder why I don’t shake like Michael J. Fox. So I tell them. So it’s just hard to keep explaining that over and over again.

I don’t like the sympathy when people say, “I’m sorry, how you feeling?” I know that that’s concern and I understand that and I appreciate that. But I do my best not to put Parkinson’s in the front of my brain. I try to leave it in the back so that I deal with it as it comes along. I’ve never really cringed at anybody over talking to me about my Parkinson’s, because, mostly, it’s concern. I’m fortunate that my tremors are mild. Most of the stuff that’s happening to me is the balance and memory and stuff like that. Like I said, I only get the tremors when I get really upset, and it’s just one arm really. These are the ones that I’m aware of.

What makes me cringe is when people say, “Why don’t you just take more medicine?” Cause I’ve looked at all that and I look at the side effects and there are other things like the deep brain stimulation. “Why don’t you just go ahead and do that?” I’m just not ready to go forward with that. There are some risks with that too. Also when people think that I’m less capable and I know I am in some ways but there are still other things that I can do and overall, my age, even though I have this condition, I’m still in otherwise really good shape. It upsets me when people, for instance, we went on a hike with friends and somebody in the group said, “Oh, you might not be able to do this.” I was able to do just as well as everybody else, maybe even better. That’s just, people shouldn’t expect less of me, I guess. When they do, it makes me cringe.

My thoughts about what some other people say. I wish they wouldn’t say that she wouldn’t get better and they support her and tell her that she is going to get better and support her and telling her she looks good even if she’s having a bad day or whatnot. Sometimes people don’t think before they say things that can hurt people’s feelings. We need to be supportive and always stay positive with them.

Sometimes people will say, “It’s the disease that’s taking over.” Sometimes people will say that I’m making excuses for her. I feel that people look down on her in a sense, thinking that she can’t take control or doesn’t understand, when in fact she does. I wish people would be more optimistic around her and applaud her when she does well and when we do these different therapies. And I also wish people wouldn’t just say, “Oh, I’m so sorry that she has this disease,” because I don’t want a disease to define a person. So that is the biggest thing, I wish people would just not say, “Oh, I’m sorry you have this disease.” I wish they would just be more understanding.

Everyone tends to think that Parkinson’s is just shaking. They don’t understand the aspects that it takes with mental health and smaller things. Even just being able to hold something, even if they’re not shaking, their motor skills are definitely affected. And a lot of people tend to, when you say that you have Parkinson’s or when I say that she has Parkinson’s, they just tend to be like, “Well, she doesn’t shake. It can’t be that bad.” But that’s not the whole thing. And I wish that people understood that better.

What makes me cringe most is when people say, “You look so good.” I don’t care how I look. It’s how I feel. And people don’t realize that how I feel is what’s more important than how I look.

Let’s see, how people talk about it. Well, perceptions are they are bothersome. Most of the people think it’s just a tremor. Even in my own family, they gauge how I’m doing by how prominent my tremor is. Well, that can change in one hour increments, so that’s just not an accurate reading. So yeah, just the perception that it’s just a tremor, that is bothersome. What do I wish people wouldn’t say? “You look fine.” I wish people wouldn’t say that because when I’m medicated, and I’m at the peak of the effectiveness of my medication, yes, I do look fine. And look at me two hours to three hours to four hours later, especially if I haven’t taken my next pill on time, and I’m going to be a completely different person, you know? And that’s if you’re with groups that you don’t know well for say like business conferences, for example, you’re with a group for half a day, the way you look when you show up first thing in the morning is not going to be the way you look after lunch, and so that’s bothersome. Yeah, so two things, I wish people wouldn’t say is, “Oh, that just means you have a tremor” and “Oh, you look fine.” Those are my two things.

I really don’t have any cringe points. People do not say anything that makes me uncomfortable.

I don’t like when people say, “Go to the natural doctor, he will help cure you.” And I do not like when people say, “Take vitamins or essential oils, that will help you,” because I’ve tried all that and it doesn’t work. And I wish people would stop saying, “But you don’t have Parkinson’s, it’s something else.”

Nothing has made me cringe. People have been very supportive and appropriate. I can’t think of anything that people have said that I wish they wouldn’t say. That people seem to be very understanding and supportive and pretty well, although they don’t know a lot about the condition. Sometimes they have not said things that were really hard to hear or that were inappropriate.

I wish people wouldn’t say to me, “everything happens for a reason”. I wish people wouldn’t say to me that “it’s okay” and “everything’s okay”, because it’s not. And people don’t specifically address my loved one’s condition, just more about how we should accept it.

“Why are you parking in that handicap space when you don’t look ill?” Another perception is because he is still young, looking at him first glance, he doesn’t look like he has an illness until you speak to him. What I wish people wouldn’t say is “He’s so young, how could he have something so debilitating?”