Communication and Connection: What You Say Matters to Those With Parkinson’s

Jo Gambosi avatar

by Jo Gambosi |

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What do you say to someone who is diagnosed with Parkinson’s disease (PD)? What words help and what words hinder?

My sister Bev was diagnosed with stage 3 PD, and her caregivers, including me, have challenges in knowing what to say to her and how to say it in the right way. Because of her cognitive issues, which I wrote about in a recent column, we wanted to make sure that we speak to Bev in a manner she can easily understand, and one that is respectful.

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Bev told me, “Sometimes I think people think I have no brain cells or I can’t think for myself anymore just because of my Parkinson’s. It’s the way they say things to me.”

I asked Bev how we could talk with her or ask questions in ways that help. I also thought about words we could use that communicate support and understanding instead of frustration and misunderstanding — words that hurt.

“First of all, people talk too fast and sometimes too loudly,” Bev said, although she does wear hearing aids. Thought processing is sometimes slower for her, so it helps to speak more slowly and repeat things to her.

I was on a mission to find helpful communication tips, so I did some research and found a great list by the Davis Phinney Foundation for Parkinson’s of both helpful and nonhelpful ways to communicate with someone diagnosed with PD. It helped me see how I measured up.

Some of the article’s tips include the following:

1. Don’t ask the person, “How are you feeling?” Instead tell them you’re glad to see them and you’re excited to share some things with them.

I have changed my communication with Bev, which is over the phone or on FaceTime, to ask, “What’s happening for you today?” Or, “What’s on your agenda for today?” She then tells me her planned activities, which also helps her to remember and focus on those tasks. I also share what’s going on for me that day.

In this shared communication, substituting “What’s on your agenda for today?” is more respectful and engaging than asking about how she’s feeling and focusing on her PD. Sharing what is going on in my life also makes the conversation seem more normal.

2. Don’t say, “Let me know if there is anything I can do for you,” or something similar.

Although the good intention is there, I found it is better to be specific. Recently, when Bev told me she had an overcharge on a Medicare bill, I asked, “What if we did a conference call with Medicare regarding the bill? Would that be helpful?”

I’ve heard some of her well-intentioned friends say, “God never gives us more than we can handle.” But what Bev would really like to hear is, “What is it that I can do to support you, especially on your difficult days?”

3. Don’t use empty phrases like “You’re tough. You’ve survived a lot already.”

I think sometimes that makes people with PD feel that they have to live up to an expectation.

4. Instead of saying to the person, “Don’t you remember?” or, “Remember that I told you,” which are words that hinder communication, use supportive or empathic words.

When Bev tells me, “You know me, I just don’t remember things,” I say, “I know, sometimes it’s hard to remember. That must be frustrating for you.” I also joke with her that she has neural blending, a term I invented for mixing up thoughts. This communicates that I care about her feelings. I also find that it is better to repeat questions or explanations to her. I will say to Bev, “Did that make sense to you the way I explained it?”

In the book “Words That Hurt, Words That Heal,” Rabbi Joseph Telushkin writes that, “As powerful as the words to hurt is their ability to heal and inspire.”

The words we use, and how we say them to someone with PD, can enhance or become a roadblock in relationships. Although it can be frustrating for caregivers to deal with changes in thinking or slowness of speech, I must remember that Bev didn’t choose to have these ongoing challenges associated with PD.

I want my words to Bev to be kind, respectful, compassionate, positive, and hopeful. I keep working on improving my communication skills with her. Most of all, I want to convey to her that she is not alone.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

ANA MARIA TAMAYO avatar

ANA MARIA TAMAYO

Dear Margarida, Thank you very much for your thoughful article. I just translate with google app and share it with my support grout community here in Lima, Perú. Greetings to BEV.

Reply
John Hughes avatar

John Hughes

Excellent article. I have people ask me "How are you doing" My first answer is "Am Doing" I then try to change the subject to something positive. Most people do not understand that taking med's for PD does not make the problem go away or get better.

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Richard Gitschlag avatar

Richard Gitschlag

These ideas are also useful for use towards even non-PD people. But being a Parkie myself, I wish more would take these to heart..

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rosemary avatar

rosemary

Than you Jo, this is very helpful. The comments I dislike are those which give the impression I am being watched. One neighbour, when I told her I have Parkinsons, said “Yes, we’ve been watching the way you walk and thought you had Parkinsons. We have a friend with it and so we know a lot about it. ” .
I wish she hadn’t felt the need to tell me how clever she was. I hate to think people are watching me and discussing me. The husband of the same neighbour, has twice said to me: “How are you going?” When I reply “Fine thank you”, he says very reassuringly “ You’re looking good”. So I reply, “So are you.” To this, on one occasion he replied “Yes, but I haven’t got what you’ve got.” The others in the group we were talking to looked in amazement to me to see if I was going to enlighten them. I did.

I like to be treated the same as others and I don’t think casual acquaintances should make comments about how I look. It isn’t something one would normally say to a casual acquaintance, so why treat a Parkinsons person differently.

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JOAN PADOUVAS avatar

JOAN PADOUVAS

I DONT KNOW IF I HAVE PD
none of the doctors mentioned it.
I went to Neurologist when I first experienced FeSTINATION a word i didnt know but my daughter found when i noticed in November a loss of balance and fall when walking the dog
It was as if leaning forward front trunk was trying to catch up with my legs
almost like the daffy duck cartoon
People thought I was walking to fast and thats why I fell and had this type of gait
I saw two Neurologists and had EMG MRI and was found to have ATM MUTATION BREAST CANCER and past history of Leukemia ACUTE LYMPHOBLASTIC
i now walk with a cane my children dont believe me that I am ill since no neurologist gave me a diagnosis or treatment
What do I do?

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