Advanced Parkinson’s

As Parkinson’s advances, your loved one will likely need greater hands-on assistance. Talk to your loved one’s PD doctor for a referral for a physical therapist (PT). PTs can provide an evaluation and teach you safe and effective ways to safely help while avoiding injury.

• Help ensure your loved one is regularly exercising. Exercise helps people with Parkinson’s stay strong and flexible, improve circulation and helps maintain the ability to do daily tasks. Online classes and in-person chair exercise classes can be worth exploring.
• Ask an expert. Work with a physical or occupational therapist to design an exercise program tailored to your loved one’s particular needs and challenges.
• Build a routine. Encourage regular movement of arms and legs as part of the daily routine. It may be necessary to split exercise into several short sessions, or to incorporate a few exercise activities during dressing or bathing tasks. Use small, inexpensive equipment like balls or balloons throughout the day to help stimulate movement, and practice repeating common words or phrases, focusing on maintaining loudness in between tasks or activities.
• Think big. Encourage your loved one to focus on maintaining large, exaggerated motions whenever possible.
• Stay active together. Get your loved one up and walking with assistance whenever possible to maintain leg strength and strong, healthy bones. Engage in activity with your loved one through music (dancing, marching, singing, swaying, etc.). Encourage participation, when possible. Give just enough assistance as required.

In addition to the natural changes like hearing loss and cognitive changes that come with aging, it can be even more challenging to communicate when your loved one has advancing Parkinson’s.

A person with Parkinson’s is more than 33 percent more likely to experience a conversation breakdown due to non-movement PD symptoms — such as changes to speech, decreased facial expression (also called "facial masking") and anxiety.

• Work on speech. Ask your doctor for a referral to a speech pathologist to design a breathing and speech practice program.
• Pick times of day to have specific conversations. Consider medication times and times when the person with PD is less prone to fatigue.
• Eliminate distractions. It helps to see and hear as you communicate. Turn off the TV and sit face to face to make out mouth movement and voice loudness.
• Remain calm. Resist raising your voice or giving up. People may withdraw and become nervous with an elevated voice. Stay engaged and be persistent. You will find strategies that work for you.
• Negotiate preferences ahead of time. Care partners who are often just trying to help can talk over or interrupt their loved one. This often leads to unintentional negative effects and can end up taking away from identity and voice. ASK for permission to speak for them or fill in information.
• Acknowledge conversation difficulties. Verify that you understood the message. Discuss openly the type of help needed and how you would like to give and receive it.