Editor’s Note: These are brief notes from Elizabeth Wong about what she got out of the presentation and what she learned from the Q&A. Following the summary are more detailed notes, in case you are interested in reading further!
Speech therapy plays a vital role in helping individuals with PSP and CBS maintain their ability to communicate and enjoy mealtimes. These communication experts understand the challenges of slurred speech, weak voice, and language difficulties, and they can provide personalized strategies to help you connect with loved ones and express your needs. Early intervention is key! By working with a speech therapist, you can learn techniques to strengthen your voice, improve clarity, and explore assistive communication options like text-to-speech apps or communication boards.
Don't let swallowing difficulties diminish your enjoyment of food. Speech therapists can guide you on safe swallowing techniques, modified diets, and strategies to prevent choking and aspiration. They can also help you navigate complex decisions about tube feeding, ensuring your comfort and quality of life remain top priorities.
Remember, communication is more than just words. It's about connecting with others, expressing your thoughts and feelings, and maintaining your sense of self. With the support of a speech therapist, you can continue to live a fulfilling life, even as communication and swallowing become more challenging.
“Communication and Swallowing Management with PSP and CBD”
Presented during Progressive Supranuclear Palsy / Corticobasal Degeneration Symposium
Speaker: Stevy Shadwick, CCC, MS-SL, Kaiser Speech Language Pathologist.
Symposium Host: Brain Support Network and Stanford Movement Disorder Clinic
Symposium Date: June 29, 2024
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Stevy’s role and philosophy as a speech pathologist is to provide comfort and quality of life by focusing on eating and communication. She works to help those eat the things they enjoy despite having difficulties and helps those be able to communicate their wants and needs and ability to connect.
Communication
Here's an overview of communication issues you might notice:
- Slurred speech
- Low volume voice
- Slow and halted speech
- Word-finding difficulties
- Difficulty with grammar
- Memory loss
- Cognitive impairments
You might have dysarthria (slurred speech) or difficulty voicing (low volume). You might also experience:
- Slurred speech
- Fast rushes of speech
- Stuttering-like qualities
- Hoarse, rough, or strained voice
These difficulties can worsen over time. Here are some strategies and treatment options:
- Compensatory strategies: Speaking loudly, slowly, and over-exaggerating words.
- Exercise programs: Lee Silverman Voice Treatment (LSVT) and Speak Out, developed for Parkinson's Disease, can be helpful.
Remember that at some point, exercising your speech might become difficult, so other options might be needed.
Another communication difficulty is Primary Progressive Aphasia (PPA) or Primary Progressive Apraxia of Speech.These are overlapping variants of PPA with the following difficulties:
- Effortful speech
- Shorter sentences
- Hesitation
- Mispronounced words
- Saying "yes" when you mean "no"
- Trouble understanding complex sentences
- Difficulty with grammar and writing
- Difficulty with memory and other cognitive functions (later in the disease)
When these issues worsen, and it becomes extremely difficult to be understood, we have other options: Augmentative and Alternative Communication (AAC).
Many of us already use AAC, like text messages and emails. When speaking is difficult, you might rely on these methods more. Here are some AAC options:
- Text-to-speech apps: Type in what you want to say, and the app will voice it.
- Alphabet boards: Spell out words.
- Communication books: Contain pictures with words and phrases to communicate needs.
- Speech-generating devices: High-tech AAC option with various features like communication apps, environmental controls (turning on and off lights or TV), and internet access. Can have them mounted on a bed or wheelchair.
- Examples of access methods:
- Touch screen device for those who have difficulty with their voice.
- Large screens for those with vision problems or screens that have eye gaze capabilities.
- Microlight switch that takes the smallest touch to select thing on screen that someone is trying to communicate with.
- Trackball that is reactive to very small movement.
- Scanning methods or electromyography (EMG), example shown of a woman with electrodes on forearm where the smallest twitch movement was used to select things on screen.
It's important to maintain connections with loved ones, and AAC can help with that.
Swallowing
Difficulty swallowing is called dysphagia. Common symptoms include:
- Coughing
- Choking
- Throat clearing
- Wet, gurgly voice
- Feeling something stuck in the throat
- Taking a long time to eat
- Chewing slower
Here are some strategies to improve swallowing:
- Take one sip or bite at a time.
- For mild/moderate symptoms, being mindful when eating can be helpful.
- Cut food into small bits.
Modified diets can also help. The International Dysphagia Diet Standardization Initiative (IDDSI) framework provides a standardized system for describing food textures and liquid thicknesses. In terms of thickeners for liquid, there are gel and powder based. Powder based thickeners tends to thicken more as the drink is sitting there and as people are still trying to finish drinking and they tend to have an aftertaste that people don't like, and sometimes does not the powder does not thicken as well at certain temperatures or in certain drinks, therefore people tend to like gel based thickeners that can be purchased online or Amazon.
Tube Feeding
Research suggests that PEG tube placement should be an informed decision made by the patient and family, with recommendations from the interdisciplinary team (neurologist, palliative care physician, speech pathologist, dietitian).
Research on PEG tubes in progressive neurological disorders like PSP and CBS shows limited positive outcomes. There's little evidence of prolonging life and an increased risk of aspiration pneumonia, infections at tube site, and other complications (such as pressure ulcers, dislodgement).
Alternatives to tube feeding include gentle hand feeding, using strategies with self-feeding, and modified diets. These can provide comfort and improve quality of life without increasing the risk of aspiration pneumonia.
Ultimately, the decision about tube feeding is individualized based on the patient's environment, needs, and goals.
Q&A
Q: Are assistive communication devices covered by insurance?
A: They can be, depending on your durable medical equipment coverage. There are also funding options available.
Q: What is EBP?
A: EBP stands for evidence-based practice. It involves using client perspectives, clinical experience, and scientific evidence to make clinical decisions.
Q: What are considerations for swallowing after a feeding tube is placed?
A: Some patients with feeding tubes can still have some pleasure feeding with small amounts of puree or thickened liquids.
Q: What is silent aspiration?
A: Silent aspiration is when someone aspirates but doesn't show outward signs like coughing. It's detected through instrumental exams.
Q: How can you get aspiration pneumonia with a feeding tube if you're not eating by mouth?
A: You can aspirate on saliva or on gastric contents that come back up from the stomach.
Q: Is fluid volume important for speech and swallowing?
A: Staying hydrated helps with vocal cord function and the quality of the voice. Eating and drinking help maintain the swallowing muscles.
Q: Do you recommend VitalStim therapy?
A: Not a lot of people use VitalStim. VitalStim is a passive exercise program where electrodes are put along the throat to help stimulate the muscles. Research supports active swallowing and eating as more effective.
Q: Can you talk about Speak Out, LSVT LOUD, or other training programs that are low-cost?
A: Speak Out offers online videos. It's helpful to have some guidance from a speech therapist initially, and then you can continue practicing on your own.
Editor’s Note: These are more detailed notes, in case you are interested in reading further! The author is also Elizabeth Wong.
Stevy’s role and philosophy as a speech therapist is to provide comfort and quality of life by focusing on eating and communication. She works to help those eat the things they enjoy despite having difficulties and helps those be able to communicate their wants and needs and ability to connect.
Swallowing difficulties: dysphagia is the medical term for difficulty swallowing. Symptoms include:
- Coughing after swallowing.
- Throat clearing frequently.
- Wet, gurgly voice after swallowing.
- Feeling of food stuck in the throat.
- Prolonged mealtimes due to slow chewing and swallowing.
Strategies to use when someone has swallowing difficulties: Behavioral Changes –
- Eating Slower: Focus on taking smaller bites and chewing thoroughly before swallowing.
- Sitting Upright: Avoid reclining while eating. Sitting upright with good posture allows for better swallowing mechanics.
- Swallowing Strategies: Speech therapists can teach specific techniques to improve the swallowing process, such as the "head tuck" maneuver.
- Provale cup with lid and handles encourages small sips, drinking a smaller amount of water at a time and helps prevent choking.
- Nosey Cup and a giraffe bottle with long straw could also be helpful.
Strategies to use when someone has swallowing difficulties: Diet Modification –
- Texture Changes: Modify food textures to softer or pureed consistencies depending on the severity of swallowing difficulties.
- Liquid Thickening: Thicken liquids with thickeners to slow down the flow and improve swallowing control. There are powder and gel based thickeners. People usually prefer the gel based thickeners based on taste and it does not continue to thicken during drinking.
Difficulties with speech: Dysarthria is the medical term for slurred or weak speech. Symptoms include:
- Difficulty with vocalization (making sounds).
- Slow or fast speech with rushed quality.
- Stuttering-like speech.
- Monopitch: Reduced variation in pitch, making speech sound monotone.
- Breathy or strained voice.
General strategies to use when someone has speech difficulties:
- Speak loud: Project your voice for better clarity.
- Speak slower: Focus on clear pronunciation and enunciation.
- Over-exaggerate words: Emphasize key words in your sentences.
Treatment Programs: trial a program to see if the individual with MSA can benefit from it.
- LSVT (Lee Silverman Voice Treatment): A speech therapy program designed to improve vocal loudness, strength, and coordination in people with Parkinson's disease (sometimes used for MSA as well).
- Speak Out!: Another speech therapy program focusing on improving communication for people with Parkinson's disease (may be used for MSA).
What to do when the speech therapies are not helpful anymore? Augmentative and Alternative Communication (AAC) tools provide methods for communication when speaking becomes too difficult.
Low-Tech AAC:
- Picture boards with symbols or images representing desired actions or objects.
- Alphabet boards for spelling out words.
- Gestures and facial expressions (e.g., blinking, thumbs up/down, smile).
- Downloading a text to speech app on phone or electronic tablet.
High-Tech AAC: These can be used when someone has increased difficulty with their hands and voice as disease progresses.
- Speech generating devices (SGDs): These computer-like tablets have built-in software with vocabulary options for selection and communication through synthesized speech.
- Using apps or Google Assistant, Alexa, or Siri for environmental controls such as turning on or off light, turning on and off TV, etc.
- For MSA patients without cognitive issues, can use an app where there are words and the person can press the word to communicate.
- There are mounts and holders that can be used so the devices can be accessible.
- Access Methods for SGDs (speech generating devices):
- Touchscreen: Selecting buttons or words on the screen with your fingers.
- Head control: Moving a cursor on the screen with head movements.
- Eye gaze: Using eye movements to select options on the screen.
- Light switches: Pressing buttons with minimal hand movement.
- Electromyography (EMG): Using slight muscle movements to control the device.
Additional options:
- Voice Banking: This involves recording your own voice before significant speech decline. This recording can then be used to create a personalized AI voice for your SGD later.
- There are many options for voice banking at various prices and free such as “Voice Keeper” and “Acapela My-Own-Voice”.
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- Apple “Personal Voice” found in “Accessibility settings” is compatible with transferring to some communication software.
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- Message Banking is real time audio recording of voice. It could be you telling a joke, singing happy birthday. It is recording someone saying something and using it on demand.
Question-and-Answer
Q: Does insurance help with speech generating devices?
A: Price will go up with speech generating devices because there will need to be accessories and mounts to go with it. The device and accessories would be durable medical equipment. If there is copay or no coverage, other funding sources that could be available. Don't let money be the reason to not get the devices. There are ways to get full coverage.
Q: What is EMG?
A: EMG is an electrode you can put on any body part such as on body part or face, so someone could lift their eyebrows to select a button on screen.
Q: Is speech therapy a problem if a person is drooling?
A: If they are drooling, I will give them cue to swallow their saliva. I would give a person reminders to swallow.
Q: Are other languages available in speech generating devices?
A: Yes, there are Spanish versions and other languages, you can also switch through different modes and switch between Spanish and English depending on the person. Different languages are available.
Q: Can you speak about mutism and challenges associated with it?
A: Not being able to communicate or move his eyes can be very difficult. At some point, disease can cause a person to lose their voice. It is important to work with speech therapists on ways to communicate with others in order to be able to connect and express themselves.
Q: Someone suggested using an enlarged emoji list.
A: I encourage creating personalized communication boards and include real life photos of people or images of restaurants they like to frequent.
Q: Does Medicare cover AAC?
A: Speech-generating devices and other AAC tools may be covered by insurance, especially for MSA patients. Speech pathologists can help navigate the insurance process.