Asking the uncomfortable questions: A Parkinson’s perspective

Whether you are a relative, a friend, a neighbor or a colleague, most of us are connected to someone with a disability or chronic illness.

And it is a shared dilemma to know how to talk with people over concerns or questions about their conditions.           

What to say, what to know, how to ask … raise pretty much the same dilemma no matter what the particular chronic or disabling condition is.

This article focuses on Parkinson’s disease, because April is Parkinson’s Awareness Month, and today, April 11, is World Parkinson’s Day. More than a million people in the U.S. have been diagnosed with Parkinson’s disease.

Last year, I wrote about what people who have Parkinson’s want people who don’t have Parkinson’s to know about the disease.

This article’s focus is the counterpoint of last year’s. What do people, especially relatives and friends, who don’t have Parkinson’s, want to know about the disease, and about how to ask questions of those people who do have Parkinson’s?

Parkinson’s presents differently in different people, so questions may not be the same for everyone. There do, however, seem to be some common concerns.

Different questions, similar concerns

Marcia Kipnis’ teenage son, Liam, asks the question common to most relatives: What will happen when? How is the disease going to progress? Unfortunately, that’s one of the questions that doesn’t have a uniform answer.

My friend Rochelle Corso wonders about symptoms and prognosis, but she is more concerned with how I feel about what I’m going through, and she mostly wants to know how she can be supportive.

Karen Young, Jim Young’s wife, has the same concerns as Rochelle, but she doesn’t always get the answers she would like to have.

“I want to know Jim’s feelings about his condition and any decline or changes he notices, but even when I ask him directly, it’s hard for him to tell me. He keeps a lot in. I wish he would share because it would be easier for me to know how to be supportive. But he has to decide. It can be frustrating for the spouse.”

Feelings are important, but practical discussions also have their place.

Practical considerations

Karen and Jim are both 61 and both work full time in demanding jobs. Karen thinks they should talk about: Do they want to change their work pace? Do they want to travel more? Do they want to spend more time with their three adult children? The conversations are hard because the future is unpredictable.

Naomi Richman, Hillorie Morrison’s daughter, was depending on her mother to tell her what she thought she should know. Now, she’s beginning to change her mind.

“At first, I went with her to doctor’s appointments. Then instead she began giving me updates. I was thinking she’s taking care of everything and doing what she is supposed to be doing,” Richman said. “I haven’t asked her about anything in particular, but I’ve started to think that it would be more comfortable talking about the Parkinson’s if it were just a regular part of conversations we had. I mean to make my conversations with her more intentional.”

Liz and Craig Wolens have no choice but to talk about everything with Craig’s mom, Heather. 

She has had some serious falls and incapacities as a result of her Parkinson’s; they bought a big house together so she could live with them.

“I go to each doctor’s appointment so I can be part of the conversation,” Craig said. “My mom has a tendency to minimize her disease. We had to have some honest conversations to make sure safety is her priority over her attempts at independence.  For example, she’d like to clear the table. But the risk for falling when she’s carrying something far outweighs any other interest.

“Another example is driving. I have her drive around with me to make sure her driving is OK. At first, she was hurt and upset, but I wanted the conversation to start, and now it’s just part of our routine.”

Friends don’t necessarily have to think about these serious conversations.

Evelyn McGowan, Judy Freitag’s friend, wants to know Judy’s limitations because she wants to be helpful. The two have been friends for a long time and have a history of showing up for each other. 

“Judy knows my questions and concerns come from a loving place, not a judgmental one. As long as I’m respectful, I can ask anything, and I’m not reluctant to ask questions. But I do expect Judy to tell me how I can help. For example, we hike together, and she told me she needs help to keep from falling forward. We both use walking sticks, but I keep what she said in mind when we’re walking together.”

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.