For the last 5 weeks, I have been conducting a weekly speech class called Speak Easy 4 PD, on behalf of Hope Parkinson Program, a community-based organization serving individuals with PD in SW. Florida. The class has been offered in-person in the past, but this year is being conducted on ZOOM as we continue to practice social distancing.
Usually, I ask participants to join the group alone, even though their spouse or other care-partner might be in the home. I make this request in part to establish greater ownership for the program, but also to respect the privacy of other group members. But, this week, spouses were invited to join us for a discussion about how Parkinson’s and associated changes in communication may impact relationships.
I won’t discuss all of the conversation in this blog post, but I thought it might be worthwhile to share some of the main points in the hopes that it may serve as some food for thought for others who find that Parkinson’s has placed them on shifting ground in their relationship with their spouse or perhaps with a parent.
Communication Difficulties are Common for Persons with Parkinson’s disease
It’s estimated that approximately 70% of individuals with Parkinson’s disease have hypokinetic dysarthria. (refers to low volume but may also include speech rate disturbances and overall reduction in clarity). But, if we think about communication more broadly, we have evidence that Parkinson’s can also cause cognitive-linguistic symptoms such as memory and word finding difficulties and bradyphrenia (slowness in thinking). Add to these some age-related problems such as hearing loss, either in the person with PD or their spouse, and day to day communication can become a source of frustration.
Because communication problems are so prevalent in PD, in addition to early referral to speech-language pathology, both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work and close communication partners should be included in assessment and intervention strategies from an early stage.[i]
She says: “he mumbles” He says: “she can’t hear” (one or both may be true).
- Parkinson’s may change speech clarity by reducing volume or changing rate of speech.
- A spouse who has a hearing loss, or who has hearing aids that they refuse to wear is contributing to communication difficulties. It’s unfair to expect the PWP to undergo speech therapy to improve speech while their partner is unable to hear well.
He says: “she speaks too softly” She says: “I feel like I’m shouting.” “I can’t talk this loud”
- Parkinson’s causes a sensori-perceptual disconnect causing the PWP to mis-judge the amplitude of their voice, the amplitude of their movements. Hence, therapy often focuses on increasing the amplitude of movement, which may not feel normal to the PWP.
- Medication “off” times, dyskinesia, and other fluctuations associated with PD, such as fatigue, may impact voice use.
He says: “I have trouble finding the words.” “I’d rather just sit back and listen.”
- Word finding difficulty is a common symptom of PD. Bradyphrenia, slow thinking, is a mental equivalent of slow movement (bradykinesia) it is also a common non-motor symptom of PD.
- It may take the PWP a longer time to process what is being said, longer to find the words to formulate the thought, and a harder time saying it loud enough to be heard.
- For the PWP, each component of communication requires conscious effort, focus, and attention.
- A diagnosis of dementia or mild cognitive impairment will contribute to communication difficulties.
If you are a spouse, or even an adult child with a parent with Parkinson’s, it is not easy to be patient during every communication exchange (been there and done it), and in addition to the frustration it brings, it can feel scary or overwhelming at times to be dealing with the variety of motor and non-motor symptoms that are associated with PD, and can change from day to day and even within a day.
But remember, the Person with Parkinson’s (PWP) is NOT doing this on purpose. Afterall, who would choose to have difficulty speaking or walking or doing the myriad of other things we do all day long at an automatic level with barely a thought?
 Inga-Lena Johansson, Christina Samuelsson & Nicole Müller (2020) Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease, Disability and Rehabilitation, 42:13, 1835-1843, DOI: 10.1080/09638288.2018.1539875
If your support group or organization would like to discuss this topic further including suggestions for managing and improving communication in the face of PD, please contact me and ask how to schedule a ZOOM discussion for your group.
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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 * Voice Aerobics® A Whole Body Approach to Voice Practice
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