A patient recently asked me a question via email. She has a diagnosis of Parkinson’s disease (PD) and had DBS (Deep Brain Stimulation) a few years ago. She is a faithful participant in a weekly after-therapy class I provide, and I view her as one of the co-facilitators of the group, as she often steps forward to interact with other members and provide feedback regarding their speech.
But, in this email, the questions she asked were interesting to me, and when I wrote my long-winded response, I thought that her questions were probably the questions many other individuals living with PD have. So, I am sharing excerpts of her original email and my response below:
I’ve been meaning to ask you a question that’s been really bothering me. I remember how surprised I was when I first heard you say that people with PD who are so soft spoken, don’t realize they are being soft spoken and we hear ourselves speaking and it sounds normal to us. In fact, I remember thinking I was yelling when people asked me to speak up. And it wasn’t until you taped me that I heard how low my voice really was. Lately, my husband has been having more trouble hearing me. I asked him if it because I’m not projecting the volume or because my words are not clear enough and he said both.
So it makes me think of some of the members in our weekly Speak OUT! group. When they speak, I frequently can’t understand what they say, because they are speaking too fast, don’t have much breath control and do not enunciate. But if they can’t hear how soft their voice is, can they hear how garbled it is or is it the same as volume and to them they sound normal? I’m so afraid I will sound like them and not realize it. I can tell when I’m really speaking low, partly because it is so hard to physically project my breath. I also can sometimes tell if I’m speaking too fast, but not always. When you tell other speakers to slow down and enunciate every word, they do much better. So unless they assume every time that they speak they are not enunciating and are speaking too fast and they always need to emphasize speaking slower and clearer whenever they do speak, they won’t be understood.
In other words, speaking with intent means you don’t really know how you sound because PD tricks you so you just have to always speak like you won’t be heard unless you over emphasize volume, clarity and speed?
Earlier this week, my husband said he couldn’t make out what I was saying. I repeated myself right in front of him and spoke slowly and loudly. He was watching my lips and thought I was saying the word tin, which made no sense to him. But I was saying thin. He couldn’t hear the “th” sound. I got frustrated and was sure I was clearly saying thin not tin. I’m not sure how I could have resaid it so he could understand, but I eventually spelled it. I’m just terrified that I will eventually sound like worse?
Below is my response slightly edited:
First of all, you DO NOT sound like anyone else. Some folks have a festinating speech pattern, which is that very rapid rate, and it is a terribly difficult motor speech feature to manage both as a therapist and a patient, and what’s it get a hold it’s difficult to reduce. Other members have multiple issues, including terrible hearing loss. The fact that they keep talking and don’t self-correct,is the evidence that that internal auditory feedback system that is normally present for average speakers is not working. It is also why I constantly say it is imperative that members of the group provide the external feedback they require to attempt self-correction. Remaining silent and acting as if you understand them when you don’t, is really not helpful to them, and is probably already happening with their friends and they don’t even realize it. I know that feedback all day long when it is coming from a spouse, can feel like nagging, but THEY are your primary communication partners, and aside from your therapist, are probably going to provide you with the most honest feedback. (That is, of course, if their hearing is not impaired!)
As you can see, everyone with PD, like everything else may have different motor speech symptoms. Low volume, hypophonia is certain the most characteristic, which is why LSVT LOUD focuses so much on amplitude. When we increase the amplitude of the signal it tends to have a beneficial affect on other aspects of the motor speech system.
As for speaking with “intent”. That is the self-cue which may help people recognize that it will require focus and concentration when they speak because in many cases it is not happening normally like it did for most of their life. Remember, loss of dopamine=loss of automaticity, so even with speech, many aspects of movement of it that used to be automatic now require focus and control.
Problem is, it is difficult for any of us to constantly focus on speech production when we are in a conversation because conversation requires listening, processing information, formulating novel thoughts, not paying attention to environmental distractions, etc. It’s why a device intervention like the SpeechVive can be helpful for many people, because it automatically through Lombard reflex helps the person increase their volume to a more normal level of loudness while also reducing the burden of having to focus on speech production. Unfortunately, it does not necessarily benefit rate disturbances in the same way, which is why early referral to speech therapy and a commitment to daily practice is so important.
Hypophonia (low volume) can yield a quality of voice which sounds raspy or breathy. It is usually attributable to vocal fold bowing from stiffness, which leaves a gap between the folds and results in quality changes but can also feel to the speaker as if they are running out of breath, because the vocal folds are no longer working properly as an upper airway valve and are allowing too much air to be lost when speaking. You might be surprised that may voice patients I see without Parkinson’s also have a primary complaint of low volume or quality changes, due many times to age related changes to the vocal folds (presbylarynx). The main difference, of course, is that they are fully aware that their voice has become a problem and are usually eager to improve.
Your voice may also be variable throughout the day, and that is true of most people with a voice problem and can be the result of many factors, environmental influences, medications,acid reflux, and in the case of PD, wearing off of medications. Or, just vocal fatigue depending on how much talking was required during the day and in was type of environment, which we refer to as low or high demand settings.= (e.g. “high” being a noisy restaurant.)
When a patient I’m treating says: I haven’t practiced this week, and then I hear the list of excuses, company visiting, doctor’s appointments, etc., there is nothing I can say other then: “when you do nothing, you get nothing.” And, in the case of Parkinson’s for everyday you are doing nothing to maintain the strength of your voice and the integrity of the motor speech system, the disease takes advantage.
Some motor speech symptoms, like the festinating pattern I mentioned above are EXTREMELY difficult to manage conversationally, and the sooner someone enrolls in therapy and learns some techniques that may help better manage it, the better.
The final issue had to do with your husband not hearing you. When you give the example of a word beginning with “th,” the first thing I would ask is whether he has a hearing loss. “th” like “f” are high frequency sounds, and as you may already know, women’s voices tend to fall into the higher frequency range, and is part of the husband-wife communication dilemma when doesn’t speak loud enough and the other can’t hear.
Recently there has been more focus in our field on engaging primary communication partners into therapy, because, when a spouse says to me (as they often have): “she/he speaks up when their with you, but not at home.” The education and the management strategies have to be offered to both.
I hope this is helpful. It was helpful for me to know what questions a patient has, because it reminds me to address them with other patients present and in the future.
Telehealth Extended to Medicare Recipients Thru September 2025
Our country seem smore topsy-turvy everyday, but at least congress was able to include an extension of payment for telehealth for another 6 months. While telehealth may not be for every patient, I have found this form of virtual treatment to be very successful and much the same as face:face treatment. Patients like it because there is nowhere to drive to, and their spouses like it because they can use the time for their own errands or hobbies.
Interested in Virtual Speech Therapy?
Visit my private practice page and learn more or email me directly at the email listed below.
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 * Voice Aerobics® A Whole Body Approach to Voice Practice* Certified End of Life Specialist Training (CEOLS) * FiTOUR® Group Exercise Instructor
You can find a recent webinar recording on the Neuro Challenge you tube channel.
https://youtu.be/6YN_S220bdY?si=XOQ_u7-gYQRuTK7C
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