Each week, on Thursday, I host an online speech group for individuals living with Parkinson’s disease. Our group has been together since 2016, with several members attending weekly since we began — allowing friendships and trust to evolve over time.
After completing our core vocal strengthening and warm-up exercises, we begin speech practice focusing on adequate loudness, clarity, and rate to be understood by others. We typically read a relevant article aloud and follow with discussion, during which members continue to focus on all of their communication skills, including eye contact, listening, clarifying when needed, and self-monitoring for loudness and clarity.
In a recent class, I asked members to respond to several questions about living with Parkinson’s — a series I called: “Two Things.” Below are the questions and some of the responses from the group.
As you read through them, you might agree with what a few members said: with or without Parkinson’s, our answers might not be so different. We all grapple with fears, worries, and perspectives about aging. So after you read their responses, take some time to reflect on your own answers — or use these questions to start a conversation with your spouse or significant other.
2 Things I Worry About Related to Parkinson’s Disease
“The future — I don’t have any idea of what’s going to happen.”
That comment drew nods — and then a quick group consensus: nobody knows what the future holds, so don’t borrow worry. One member shared concern about how he might die, citing recent losses among people he knew with PD. But as the group explored his words, it became clear his worry was really about quality of life — about living well despite PD. The group agreed: people with PD can take control of the things within their reach — reducing fall risk, protecting speech and swallowing function, staying connected.
Several members cited worry about their spouses. The consensus: communication and planning are the best antidotes to that particular fear.
2 Things I Can Do Right Here and Right Now to Counter My Worries
“Concentrate on what I’m doing.”
Mindful attention was the top strategy for reducing falls and accidents. Participation in the weekly online class was cited by nearly everyone as a key anchor — keeping them on course and mindful of what to practice at home. Calendars and schedules were recommended for managing memory concerns.
One member summed it up powerfully: “If I don’t do anything, Parkinson’s fills up my brain.”
2 Things I Want Nurses and Healthcare Providers to Know if I Am Hospitalized
“I’m trying my best.”
This came from a member who had recently endured a lengthy hospitalization and rehab stay. He felt that staff sometimes didn’t acknowledge the effort he was putting in. His message was a reminder that people with PD need to feel seen — not just managed.
“I need my medication on time” was a universal message from the group — especially important for hospital staff less familiar with Parkinson’s disease. Most members recognize that they are now ambassadors for PD awareness, with a role to educate healthcare professionals and their communities.
2 Things I Will Do This Week to Maintain or Improve the Strength of My Voice
Attend the online class. Read aloud at home. And — practice, practice, practice — with intention and focus on the specific skills that need strengthening.
As we often remind one another: there is no one-size-fits-all approach to managing communication challenges associated with Parkinson’s disease. If volume is a problem, focus on strengthening the voice. If speech rate is too fast, work on slowing down through pausing, phrasing, and breath support. If word retrieval has slowed, incorporate activities that challenge and build that cognitive-linguistic ability.
2 Things Parkinson’s Has Taught Me So Far
Humility. Patience. A slower pace. The realization that others may not always understand — and the decision to extend understanding anyway.
“There are lots of people who care. There are lots of good people in the world.”
2 Things You Would Want the Community to Know About Parkinson’s
If you were invited to speak to a local group or organization, what would you say? Here’s what our members said:
- Everyone with Parkinson’s is different.
- Nobody did anything to cause Parkinson’s.
- Don’t judge a person by a disease.
- Don’t let PD run your life.
- “I’m not stupid because of the way I talk or a piece of equipment I use.”
A Note from Mary:
As you read through the responses above, it is likely that some resonate and some don’t — because, of course, there are no right or wrong answers. Just your thoughts and your feelings about what you want others to know about living with PD.
What I have learned from the members of this weekly group: community-based programs may be the single most important component for maintaining therapy outcomes. Friendship and peer support are the best motivators — and the best medicine for the spirit.
Take the Next Step
If you or a loved one has a speech or swallowing problem associated with a Parkinson’s diagnosis, ask your physician for a speech therapy referral.
If you are a Community-based organization and you would like an online Voice Aerobics® class for your members, please visit my website to learn more: https://voiceaerobicsdvd.com/ or Reach out: info@voiceaerobicsdvd.com
My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Certified End of Life Specialist (CEOLS) * Voice Aerobics® A Whole Body Approach to Voice Practice
Voice Aerobics the heART and Science of Voice Practice