Each week, on Thursday, I host the LOUD® Crowd, a weekly speech group for persons living with Parkinson’s disease. Our group has been together for nearly 3 years, with many of the members attending weekly since we began, allowing for friendships and trust to evolve.
After completing our warm-up exercises, and speech practice using “intent”, we typically engage in some discussion, during which, members continue to focus on using all of their communication skills, such as eye contact and listening, clarifying topics or comments 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, and which I called: “Two Things.” Below are the questions and some of the responses from the group. As you read through them, and think about your own responses, you might agree with what a few people said, and that is that with or without Parkinson’s, our answers to the questions might not be so different, as we all fuss with our own fears, worries, and perspectives about aging. So, after you read our responses, take some time to think about your own answers to the questions, or use them to have 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,” said one member, but fairly quickly the rest of the group chimed in that “nobody knows what the future holds, so don’t worry.” One member said he was worried about “how I’m going to die,” citing the recent deaths of some people he knew with PD. But, as we probed his comments a bit, it appeared that his worries were more about quality of life living well despite PD, and the consensus was that everyone with PD could take control of those things they can to reduce a hospitalization or injury from a fall, or decline in speech and swallowing. A few cited worry about their spouses, and it seemed in this regard, that communication and planning were the best strategies to alleviate some of these worries.
2 things I can do right here and now to counter my worries: “concentrate on what I’m doing,” was suggested as a strategy for reducing or preventing falls or other accidents. Participation in the LOUD Crowd, was cited by most as beneficial for staying the course and remaining mindful of what they needed to be practicing at home. Using calendars and schedules was recommended for those worried about failing memory. As one member stated: “if I don’t do anything, Parkinson’s fills up my brain.”
2 things I want nurses and other healthcare providers to know if I am hospitalized: “I’m trying my best.” This comment was made by a member who had undergone a recent lengthy hospitalization and rehab stay, and he indicated that at times he felt people didn’t acknowledge that he was doing his best. “I need my medication on time,” was a universal suggestion for what healthcare providers need to know, in particular those working in hospitals and other settings who are less familiar with Parkinson’s disease. Most members of the group know that they are now the “ambassadors” of Parkinson’s, with a role of educating healthcare professionals, and others in the community.
2 things I will do this week to maintain or improve the strength of my voice: Attend the LOUD Crowd, read out loud at home, and “practice, practice, practice.
2 things Parkinson’s has taught me so far: “humility,” “slowed me down,” “that I talk too softly,” “that I’m trying my best to have patience and understanding,” (for self and others). “that there are lots of people who care-there are lot’s of good people in the world.”
2 things you would want people in the community to know about Parkinson’s disease if you were invited to speak to a local organization: “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.”
As you read through the responses above, it is likely that you have responses that are similar or different, and of course, there are or no right or wrong answers. Just your thoughts and feelings about what YOU want others to know about living with PD.
2 things I have learned from the members of this weekly group: Community-based programs may just be the most important component for maintaining therapy outcomes, and friendship and peer support the best motivator and medicine for the spirit.
If you live in Charlotte County, Florida and are interested in enrolling in speech therapy, attending the LOUD® Crowd, or a Voice Aerobics® class, please visit my private practice page for more information: https://voiceaerobicsdvd.com/voice-aerobics-private-practice/
If you live outside of Florida, you can locate a SPEAK OUT provider and LOUD Crowd near you by visiting the Parkinson Voice Project website:https://www.parkinsonvoiceproject.org/
My MissionTo enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP
Voice Aerobics the heART and Science of Speech and Voice Therapy