Freitag was diagnosed 20 years ago and, as a result of taking the carbidopa-levodopa medication for so long, she has a constant movement disorder. “I remember being distracted when it first started happening. We didn’t talk about it but now I hardly notice it. She starts moving and I keep talking,” McGowan said.

Age is a factor

Age makes a difference too. Marcia’s teenage son Liam doesn’t ask too many questions. That’s because he counts on his mother to tell him what she thinks he needs to know. 

“Now, my mom is fine. In the beginning, we talked some about what does this diagnosis mean? But now, she’s fine. And when she needs me more, I’ll be there. Now, I watch and help with little things like helping her down the steps in bad weather. But it’s most important that she does what she’s supposed to do. And she lets me know what I’m supposed to know.”

Friends might not ask questions for a different reason. Rochelle, my friend, said she’s not comfortable asking specific questions to someone she doesn’t know well because “I don’t want to seem probing or invasive.” Her conversations depend on how close she is to that person.

“I have a friend who is related to someone with Parkinson’s. I’m comfortable asking how he is doing but nothing specific. That’s different from talking with my good friend.  I want information because I want to be helpful, even with little things. For example, I think it’s a lot of fun to fold clothes. And seeing so many of them unfolded on Cissy’s guest-room bed, I’ll ask about doing the task. It’s not that she couldn’t do it, but it’s fun to sit there and not have her spend any energy except on talking while I handle the task,” Corso said.

Corso also spent four days with me when I needed someone after a foot operation, and she’s offered to take me to doctors’ appointments if I ever needed an advocate or a driver. I don’t need that assistance now, but she knows I find her offer comforting.

Debbie Blanc is a boxer and a volunteer who assists with Rock Steady Boxing for people with Parkinson’s. The people she helps every week are more than acquaintances, but not friends she sees outside the training. Her initial motivation came from a close friend who had Parkinson’s but did not participate in activities that could slow his disease’s progression.

Blanc picks up on how people feel and what they can do on a given day by watching them. She rarely asks questions.

              Safety is critical

“My first concern is safety. What I watch for or what I say to boxers depends on how they are doing that particular day. Are they stable doing the exercises? Are they struggling with balance? I see what they are doing and I adjust to what I see in front of me … not to what they tell me,” Blanc said.

It would be nice if everyone could know the answers to their concerns by watching, but that’s just not possible.

For example, explaining to young children what to watch for is not an easy task.  Heather Wolens lives with three grandchildren who are 7, 5 and 3 years old. 

“My kids have learned not to follow too closely behind their grandmother whom they love very much. You will also hear them shout: ‘Everyone is OK, no one fell down’ when they are playing in the other room and there is a loud bang,” said Liz Wolens, Heather’s daughter-in-law. “They have learned to remind their grandmother to take it slow, or not to get up from the couch if they have scattered their toys on the floor around her feet.

“What hasn’t changed is the love these four share. They have found new games to play, throwing foam airplanes outdoors in a wide open area, tickle fights laying on her bed and endless coloring contests.” 

Wolens is an advocate for open family discussions but also the need to answer questions with research and education.

“What needs to change is the research and treatment for Parkinson’s patients,” she said. “Even with some of the best medical care in the world, we continue to feel lost on the right treatment. One of the hardest parts is the constant watching for patterns that could indicate a progression of the disease.”

Like many diseases, Parkinson’s shows up in many different ways, and progression is not predictable. Getting information from and knowing what to say to people with Parkinson’s is sometimes confusing, and sometimes frustrating, but it’s always worth the effort.