In 1997, when I first began to offer the Lee Silverman Voice Treatment (LSVT®) for persons with Parkinson’s (PWP), it was one of the few times when I would ask a spouse or other family member to NOT join us in therapy. The rationale for my decision and what I said to the patients was: “you walk in and out of my office with your voice, and you need to learn how to “play” the instrument.” I tried from the first day of speech therapy to help the person build a sense of “ownership” for the problem for which they were seeking help.
Communication, however, is not a singular process, and as time has gone on, I have learned that engaging a patient’s spouse or significant others in treatment may help them better understand how their own communication style or behaviors may support or limit the progress of their loved one. If the spouse of a patient, for example, has a hearing loss, but refuses hearing aids, it is likely that communication between the couple is going to remain unsatisfactory.
Couples have styles of communicating that have been laid down early in their relationships, and if married for many years, changing or modifying those behaviors will take conscious effort on the part of both persons. For the partner with speech and voice changes from Parkinson’s, they have a few options available to them including speech therapy and daily practice to improve or maintain clarity of speech. If they have mild or moderate cognitive problems that make self-monitoring of speech difficult, they may benefit from use of a speech aid such as Speech-Vive device or amplification.
When a patient tells me that it is just too difficult to communicate, and chooses instead to “not talk much,” this can leave the healthier spouse feeling lonely or in some instances, even resentful that they have been communicatively “abandoned” by their partner.
Studies have reported that as high as 90% of individuals with Parkinson’s disease have rated fatigue as one of their most prominent problems,including fatigue impact on communication. The constant conscious effort to express oneself, in what prior to Parkinson’s disease was implicit and below the level of conscious decision, has been reported as a considerable source of fatigue and individuals with Parkinson’s disease have described how they judge whether it is worth to use up limited energy on a conversation. Anticipation of fatigue might in itself gradually result in less motivation to engage in conversations, with subsequent social withdrawal[i]
If you live with, love, and communicate daily with someone with speech and voice changes from Parkinson’s, following are a few simple suggestions for improving communication:
Wait! Parkinson’s can cause slowness of thinking in much the same way it causes slowness of movement. Your partner with PD may need extra time to formulate their thought.
Employ the 10 second rule. Count to 10 before interrupting.
When at a physician’s office, restaurant, or any place, for that matter and communicating with a stranger, decide ahead of time if you are going to do all the talking or if you need to let the other person know that they should direct their questions or comments to the PWP.
If YOU have a hearing loss visit an audiologist for a hearing exam. If you have hearing aids, wear them. Speak to one another in the same room, and if you’re having an important conversation, mute the TV or other background noise.
Refer to your spouse by their name, or “my husband/wife,” DO NOT refer to them as “the patient.”
Communicative effectiveness can be variable throughout the day, affected by fatigue, on/off symptoms from medication, and stress. Don’t assume that if the PWP would just “try harder,” all would be better. They may be “trying” as hard as they can at that moment in time.
Join your partner/parent in an occasional speech therapy session so that you can learn more about the approach that is being used and support them in their practice at home.
[i] Patients’ and communication partners’ experiences of communicative changes in Parkinson’s disease. Inga-Lena Johanssona, Christina Samuelssona, and Nicole Müller. Disability and Rehabilitation2020, Vol. 42, No. 13, 1835-1843https://doi.org/10.1080/09638288.2018.1539875
Do Your Have Trouble with Vision?
From time to time I have patients who have difficulty seeing due to macular degneration or other visual impairment, so using written materials is not an option for home practice. Hi-VOLT® 4 PD audio CD can be a fun option. This 27 minute guided program provides words, phrases, and sentences for practice.
Use it with the Hi-VOLT® voice-on-light, a calibrated feedback tool, and feel the effort to strengthen your voice.
The Hi-VOLT® 4 PD + voice-on-light only $32. Also is available in the Travel Pack which includes 3 additional programs.
Student Scholarship Applications Now Being Accepted
Annually, beginning May 20th, 2012, a check for $500 is awarded to a graduate student in speech-language pathology. This annual commitment represents the faith I have in my own business to continue to prosper and in the students, who represent the future of a profession I love so much. Any student enrolled in an ASHA accredited graduate speech-language program is eligible to apply. Applications for 2021 will be accepted from March 1 through April 30, 2021. To learn more or to download an application visit: https://voiceaerobicsdvd.com/student-scholarship/
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
Thank you, Steve for your comment. When I teach a Voice Aerobics class, I invite spouses to participate. I ask them not to “coach” their partner, but rather, do the exercises along with them so that they have a better understanding of how PD might impact or restrict movement or voice.
Hello, Mary. I don’t read all of these but this one on communication caught my attention. I, too, coach my PD patients and spouses that slowing down of movement is mirrored in most by slowing down of thinking. To that I add “Accuracy is NOT the same thing as efficiency (which is what all of us whippersnappers think). You can still get cognitively from A to B, it just takes longer.” I also like your “10 second rule.” I could do better with that during my interviews.
Cheers!
Steve