On January 19th the Davis Phinney Foundation hosted a webinar on Speech, Voice, and Parkinson’s. Mel Dizon, with the Davis Phinney Foundation, did a question & answer hour with speech-language pathologist (SLP), John Dean. The focus was on the concrete ways a speech therapist or SLP can help those with PD and the kinds of exercises a good SLP will do with someone who has PD.
A recording of the webinar can be seen here.
The Stanford Parkinson’s Community Outreach Program has 3 informative pages about speech and PD, including exercises to do at home:
- Information about Speech and Swallowing issues in PD
- Speech & Voice Therapy Options and At-Home Exercises
- Live and Recorded Speech and Voice Exercise Options
And now, on with my notes…
Davis Phinney Foundation
Speech, Voice, and Parkinson’s
January 19, 2021
Moderator: Mel Dizon
Speaker: John Dean, CCC-SLP
John Dean is a speech-language pathologist who specialized in the treatment of Parkinson’s and related disorders, with certifications in LSVT LOUD, SPEAKOUT!, and Parkinson’s Wellness Recovery. He is also a member of the Davis Phinney Foundation’s Science Advisory Board and has been involved in a number of technology projects and startups developing tools to improve quality of life for people living with Parkinson’s. He is the founder of a network of interdisciplinary Parkinson’s rehab programs modeled on ParkinsonNet in the Netherlands. He also developed several networks of interdisciplinary Parkinson’s teams based on that model for a large-scale nursing company in the US. He currently leads Triad Health AI, a startup that uses smart speakers to slow the effects of Parkinson’s.
Q. How did you get involved in working with speech therapy and, in particular, working with the Parkinson’s community?A. John was a professional musician (classical bass & jazz) but a hand injury ended that career. He was teaching at Univ. of Dayton teaching improv by singing and injured his voice right away. He went to see a speech therapist and liked what he saw. He went to grad school at Univ. of Cincinnati. His hands were still quite painful, so he used speech recognition software rather than typing.
He moved to Colorado and was working at a residential care facility for the elderly. There he began to focus on working with those who have PD. The founding team of LSVT LOUD is in Boulder, so he did the LSVT LOUD training. LSVT was looking at combining LSVT LOUD with LSVT BIG and he liked that concept. So, he started a Parkinson’s team, and another one.
He modeled the Parkinson’s teams after a Dutch model which believes those with Parkinson’s shouldn’t have to travel more than 20 minutes or so to see a therapist and nurse that knows Parkinson’s. The doctors are still at the hospital, but the therapists are local. In Colorado at the time there were a lot of doctors, but they were all 45 minutes to an hour drive away. The local Parkinson’s teams were working really well.
I started working on a startup with an engineer in Boulder to develop an app that would measure symptoms of Parkinson’s. The app won lots of awards, but nobody was using it because using apps on a smart phone is difficult for older people with Parkinson’s due to the small size of the screen, fine motor skills required in the presence of tremor, etc. He left to do a project for the Davis Phinney Foundation, followed by his current startup with his wife, who is a physical therapist. That project is dual-task exercises for speech.
Q. What instruments did you play?
A. Classical standup, or double bass playing mostly jazz.
Q. Tell people what LSVT LOUD is.
A. LSVT LOUD started as Lee Silverman Voice Therapy in the mid-80s. Lee was a woman living with soft voice due to Parkinson’s. She collaborated with Cynthia Fox, in Tucson, and Dr. Laurie Raymond, in Boulder, to develop the current program which increases voice volume. LSVT is one of the only speech therapy programs with research evidence of the program’s effectiveness based on a randomized double-blind study, which is nearly impossible to do in speech therapy research.
They also made a physical therapy variant, LSVT BIG, which was a post-doctoral program by Dr. Becky Farley, who went on to build Parkinson’s Wellness Recovery.
Although John is trained in the LSVT LOUD speech therapy method, he doesn’t do exactly their program anymore and doesn’t call what he does by that name.
Q. What does a speech-language pathologist do for people with Parkinson’s?
A. A speech therapist or speech language pathologist (SLP) helps those with PD with communication first and foremost. That could be quiet voice, difficulty producing certain sounds, language retrieval, etc.
As important is swallowing issues. Swallowing is underrecognized. Research is littered with studies that show people with PD often don’t realize they have a swallowing problem. Even a bedside evaluation identifies swallowing issues about 1/2 the time. An instrumental exam will show almost everyone with Parkinson’s has swallowing difficulty at some level.
The third thing we help with is cognition. He collaborates with a physical therapist and together they help people with attention, alternating attention, and working memory.
Q. Please take each of those and elaborate. Let’s start with speech / communication.
A. Tremor, rigidity or muscle stiffness, and bradykinesia are the hallmarks of PD, but quiet voice or hypophonia is very common in PD. If you have quiet voice, oftentimes the rest of your articulatory precision is a little off. Sometimes, if you can make the voice louder the articulation issues will work themselves out. Also, some people have fluency issues / stuttering, especially after DBS surgery. And there is language fluency, or word finding problems.
Q. What about swallowing?
A. Sometimes people will feel like their pills get ‘stuck’ in their throat. This is pill dysphagia, but it does indicate a swallowing issue. The person is only recognizing it when they are taking pills.
John will watch how someone handles food in their mouth and how well they protect their airway while swallowing to prevent aspiration of food into the airway. When food gets into the airway it can lead to aspiration pneumonia, which is very serious.
People who drool are often at higher risk for swallowing issues later on. It is a key early indicator. Also, people who have little or no tremor are also more likely to have swallowing issues later on. He will counsel people to seek a gastroenterologist if he sees signs of slow stomach emptying, etc.
Q. Let’s move to cognition.
A. There are certain cognitive issues that show up in Parkinson’s, like the ability to sustain and alternate attention, and slow recall or word fluency. These interfere with communication because conversation moves so much faster than a person with Parkinson’s can process what’s being said and find the words to respond.
Executive functioning, like keeping track of things, planning, and dual tasking is also impaired after some time with Parkinson’s. John helps people with dual tasking because it is a skill that’s needed daily and can be fun to train with your SLP.
As an example of why working on dual tasking is important, Dr. Bloom published a paper a while back which recognized that people with PD sometimes allow their posture to sag when they are concentrating, including while dual tasking. Improper posture can put them at a higher risk for falls.
Q. Tell us something about treatment for communication.
A. LSVT LOUD laid the groundwork for speech therapy. SPEAK OUT! by Samantha Elandary’s group in Richardson, TX, is similar but diverges in some practical ways. Samantha takes the concepts of increasing intensity and over practicing making the muscles involved really strong, then applying that to sentences and more cognitive load. John and his wife take LSVT LOUD AND SPEAKOUT! a couple levels farther. They do the voice and communication in concert with dual-tasking and cognitive loading to make the speech therapy exercises prepare you for real life daily activities.
Q. Is raspy voice the same as low voice? Are there similar treatments?
A. It very much is a Parkinson’s thing and can be caused by a couple things. If your vocal folds are a bit open all the time, you don’t get a clean tone, which can cause raspy voice. Also, if you don’t talk much there can be atrophy of the vocal muscles so you push to compensate, and shout which can sound raspy.
John also refers people to ear nose and throat doctor (ENT) for an assessment because there can be other causes of things like having a raspy voice. He may refer you to a gastroenterologist too, because you could have GERD or LPR where the sphincter at the top of the stomach is open, letting acid in the esophagus which can be painful. If the acid reaches the vocal cords, it can damage them leading to a raspy voice. GI doctors can fix that with medications, raising the head of your bed, etc.
If there is no damage to the vocal cords raspy voice is best corrected with some high effort, high intensity speech therapy, like SPEAKOUT!, LSVT, or in the Netherlands they have something like those called Pitch Limited Voice Therapy
Q. Is voice slurring a PD thing?
A. Voice slurring is not a hallmark of PD. It can occur with certain medications but is more common after deep brain stimulation (DBS). In STN-type DBS they put the leads very close to the cranial nerves controlling the speech muscles in the face. John sees slurring most often after STN DBS before the programming is completed. Talk to your neurosurgeon about your DBS programming. High intensity speech therapy can help that because once you increase your voice and have a lot more air slurring, like other speech issues is improved.
In initial versions of DBS, the signal went all the way around the lead, which impacted surrounding tissue unnecessarily. New leads have current steering, in which the electrical signal is directional toward only one side of the lead. The newest DBS uses closed loop stimulation, which actually senses if more stimulation is needed in a particular area along the lead and adjusts itself.
Dual Task Exercise Demonstration: In a Stroop test, the word for a color is printed in a different color than that which the word represents. For example: the word yellow is printed in blue, blue is printed in green, etc. Test subjects are asked to say the name of the color they see, rather than read the word. Cognition is challenged because we generally read faster and more automatically than we can name the colors we see.
Rather than using colors, John uses groups of 2 or 3 numbers where each number is a different font size. The seated test subject is asked in the first round to name the number printed in the largest font while performing a repetitive physical motion, like patting their thighs. In the second round seated subjects are asked to name the number of the highest value with a different repetitive physical motion, like tapping their feet apart and together.
The idea is to dual task. The task raises your heart rate, challenges your brain, and it’s fun so you’re more likely to do it.
On DualTaskForParkinson.com you will find videos with this type of exercise challenge to do at home. DualTaskForParkinson.com has been also added to the Stanford Parkinson’s Community Outreach Speech and Voice Exercise webpage.
Q. How do people know when is a good time to see a speech therapist?
A. John recommends people see an SLP upon diagnosis with PD. If he can see someone early into their disease progression, he can understand more about their swallowing situation and get a baseline to follow progression of their issues over time.
There are also look-alike disorders (atypical parkinsonisms) which he can red flag to the referring doctor.
Most importantly, it is always easier to treat a problem early when its mild. You don’t wait to change the oil in your car until after the engine seizes. It is easier to maintain abilities than to regain skills and strength you once had.
Q. What can somebody expect at their first speech therapy session?
A. During COVID he is working via video, but in-person visits can test air breath, etc. John can do evaluations and provide exercises via video. He also likes to see people regularly, like when the dentist gives you a heads up about a filling coming loose, but he won’t need to replace it for a while. John will monitor issues until it’s time to address that issue directly.
John recommends maintenance classes, like SPEAKOUT! FOR LIFE. These classes bring people together who have completed speech therapy, so they have an opportunity to practice. It’s a great social opportunity and classes are monitored by an SLP who can notice when someone needs some refresher speech therapy. Remember, if you don’t use it, you lose it!
Demonstration of another fun speech exercise: John uses music all the time in his training, but there are a lot of copywrite issues when they want to put classes online. Instead, he wrote a tune with some percussion. He asks people to hum or beat box, so they are participating with music while they exercise.
Q. What are some things to help stuttering?
A. Stuttering is a conundrum in PD because it can be more related to medication timing or DBS, rather than being a PD symptom. The exercises that work in the general population of stutterers doesn’t work in those with PD. Instead, he works with the neurologist to adjust medication timing to avoid on/off times, or to adjust DBS programming.
Q. Can speech therapy help feeling out of breath when you talk?
A. Yes, that happens when there is a gap between the vocal cords so you aren’t getting as much volume as you could if the voice muscles were toned and holding the vocal cords together. Speech therapy can definitely help with that.
Q. What about spasmodic dysphonia?
A. This is not related to PD, but you can have this with PD. It is difficult to treat with speech therapy. Botulism toxin injections can be of help. There is one surgery that can provide temporary relief, but it is complex and risky, so would be a last resort.
Q. Someone mentioned singing – not to replace speech therapy, but for fun and speech / breath practice.
A. TrembleClefs and other Parkinson’s choirs are great for those with PD. If you’re a bit shy you can get a karaoke app or sing along with YouTube on your own. Be sure to have some form of feedback, either a friend or caregiver, or record yourself to check that you are getting the volume you think you are.
Q. Husband has long had difficulty processing group conversations, but lately can’t process what just one person is saying to him.
A. This gets into some of the attention-based cognition issues. There are some tips, like getting his attention before you start talking. Turn off the TV, turn away from the computer, etc. Be sure he can hear you okay. Speak in simple sentences, etc.
If it is progressing, especially quickly, I would talk to his doctor about whether there are medications he is taking that could be making him less attentive or sleepy. Higher doses of dopamine agonists can cause sleep ‘attacks.’ You can do cognitive interventions, which can make him better at it, but not solve the problem.
Q. How do you find a good speech therapist?
A. The International Parkinson and Mood Disorder Society is a good place to look. If they are part of the MDS, they are probably at a pretty high level of expertise. LSVT LOUD’s website has a directory of certified LSVT LOUD therapists. SPEAKOUT! website does as well. If you can find someone who is certified in both programs, there’s your Parkinson’s nerd. He/she is the one you want.
Q. How do I get more sound to come out of my diaphragm?
A. That is speech therapy. It helps you with projection. Try Excretory Muscle Strength Training (EMST). It’s a breath training tool. You blow into it and when you get to a high enough pressure, the device opens. It’s good for strengthening muscles related to speech. If you tried this before and it was too difficult to activate, there is a new model that is easier to use for beginning breath exercisers.
Q. What if I am tired at the end of my speech therapy?
A. A good therapist will know how to modify exercises, so you do a high intensity one, then something easier so you don’t get so tired by the end. You do have to tell them it is a problem for you. They can’t change things around if they are not aware of the problem.
Q. Can you recommend a couple voice exercises people can do throughout the day?
A. Everyone needs a long-term relationship with physical therapy, occupational therapy, and SLP. Humming a vowel sound relaxes tension in the vocal cords. Use any vowel sound and project your volume. Start with a hum and open your mouth to project the sound loudly. Take a deep breath beforehand and really project your voice. You can say ‘whoop’ going low to high pitch – until it becomes almost a buzzing sound. Say ‘boo’ from high to low pitch.
Q. Have you heard of CBD helping with soft voice?
A. CBD is the part of cannabis that would benefit those with PD for sleep, anxiety, etc. I have never heard that CBD helps voice.
Q. Anything people can do at home to help swallowing?
A. There are exercises like biting your tongue while you swallow, but if you have a swallowing problem and it is not addressed by a speech therapist, you can develop aspiration pneumonia, so I will not comment further.
Q. Are there ongoing treatment groups?
A. Yes. A lot of these programs are online. You start with a cohort and work the whole way with a cohort. This is great because you make friends with whom you can practice speaking and support one another. The LSVT LOUD CROWD is a speech maintenance program online.
Q. After aerobic exercise I’m not tired but my voice is hoarse. What’s going on?
A. This person may be breathing through their mouth a lot and drying out the throat. Your exercising may be exacerbating reflux. Aerobic activity benefits so many areas, if you are having specific speech issues, I would ask what’s going on during that class.
John volunteered that there is no evidence facial exercises minimize facial masking of PD.
Q. How to handle speech therapy during COVID?
A. Some speech therapists are working online, and Medicare is covering that, but John is not doing any medical therapy online. He is just running an exercise program online.
A listener contributed that having a neuropsychological evaluation is a great baseline for cognitive issues.
Q. How would you modify dual tasking exercises for those with Parkinson’s dementia (PDD)?
A. Pick the right SLP and the right activity for someone with PDD. You can modify exercises and make them engaging and fun. If the speech therapy is too structured, repetitive, and not fun someone with PDD will not be able to follow along and you will lose their engagement.