Parkinson's communication tips for families: keeping the person in the conversation

Parkinson's disease is usually described by movement: tremor, stiffness, slowness. Speech is movement too. The Parkinson's Foundation reports that about 89 percent of people with Parkinson's experience speech and voice disorders, including a soft, monotone, breathy or hoarse voice. Families often notice it first at the dinner table, when the person who used to tell the stories has stopped trying to be heard over everyone else.

The person is still there, with opinions, jokes and things to say. What changes is how easily those things reach the room. This guide is for the family and friends on the other side of the conversation. It is general information, not medical advice; a neurologist and a speech-language pathologist are the people to ask about the person's own speech.

What changes, and what doesn't

• A quieter voice. Many people speak more softly than they realize, and the Parkinson's Foundation notes that they may not be aware their speech is getting softer and harder to understand.
• A flatter rhythm. Less rise and fall, words that rush together or trail off at the end of a sentence.
• A face that shows less. Reduced facial expression can make a person look bored, cross or sad when they are none of those things.
• Slower words when tired or when a dose is wearing off. The thought is there; it arrives late.
• Hands that shake. Writing gets small and phones get hard, which closes off the usual workarounds.

Thinking changes can happen for some people with Parkinson's, and the care team can talk them through. A quiet voice or a still face is not a sign of them on its own. Treat the person as the capable adult they are, and let the conversation prove anything else.

Set up the room before you start

• Sit close and face each other at eye level, with good light on both faces, so lips and expressions are easy to read.
• Turn off the television and move away from the dishwasher. A soft voice loses to background noise every time.
• Keep to one conversation at a time. At a family meal, pause the cross-talk and give the person a clear turn.
• Choose the moment. Short talks when the person is rested usually go better than long ones late in the day.

The Parkinson's Foundation's communication tips make the same points: get face to face rather than talking between rooms, cut the background noise, have the harder conversations when the person is well rested, and be patient.

Give time, and don't finish sentences

The hardest habit to break is jumping in. When a sentence slows, wait. If you did not catch something, say which part you heard (you want to go on Tuesday, to where?) rather than asking what? again and again, which makes the person repeat the whole thing at the same volume. Guessing out loud is fine when invited; finishing sentences uninvited tells the person their turn is over.

In appointments, ask the person first and wait for the answer before you add your own. Clinicians tend to look at whoever is speaking clearly. Turning your own body toward the person hands the conversation back.

Don't read the face as the feeling

A face that shows less is one of the most misread parts of Parkinson's. The person may be delighted by a grandchild's news while looking blank. Instead of you look upset, ask how are you feeling about that? Offer choices when a long answer is hard: are you tired, or do you want to keep going? Watch the eyes, the hands and the words, not only the mouth.

Plan big talks around medicine timing

Many people with Parkinson's describe being on, when their medicine is working, and off, when it is wearing off. Speech often tracks that cycle. Save the important conversations, the decisions, the phone call with the specialist, for the on times, and let the off times be quieter. Questions about the timing itself belong with the neurologist and the pharmacist.

ExpressAgain's ALS and Parkinson's phrases include it's time for my medicine, my medicine is wearing off, I'm on now and I'm off now, so the person can say it with one tap. Medication schedules take the times from the label, and when a set is due a pop-up asks whoever logs doses to mark it given, skipped or refused.

Back the loud voice the therapist teaches

Speech-language pathologists offer voice programs designed for Parkinson's, such as LSVT LOUD and SPEAK OUT!, which the Parkinson's Foundation describes on its speech and swallowing page. Ask the neurologist for a referral. At home, the family's job is to use whatever cue the therapist agreed on, kindly and not constantly, and to make room for practice. Practice Out Loud holds the phrases a therapist assigns: hear it, record a try, hear the recording, with no grading ever.

Give the voice a helper for the hard moments

Some moments call for more than effort: a noisy restaurant, a tired evening, an off period. A communication app can speak a tapped phrase clearly and at full volume. In ExpressAgain, choosing the ALS and Parkinson's mode opens those phrases first, with needs right now, moving (I'm freezing and can't move my feet, I'm going to fall) and yes and no on the Communicate page, and bigger buttons and text help a shaking hand land the tap. Our guide to the soft voice and the tools that help goes further, and the Parkinson's page shows the whole mode.