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.
Stevy Shadwick, speech language pathologist, talks about swallowing and communication difficulties in people with Multiple System Atrophy (MSA). She discusses strategies to maintain communication and augmentative and alternative communication (AAC) tools.
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 have people be able to eat the things they enjoy despite having difficulties swallowing and she helps people be able to communicate and connect.
Dysphagia is the medical term for difficulty swallowing. Symptoms include, coughing after swallowing, throat clearing, wet, gurgly voice after swallowing, feeling of food stuck in the throat and prolonged mealtimes due to slow chewing and swallowing.
Strategies to use when someone has swallowing difficulties include behavioral changes such as eating slower, sitting upright, swallowing strategies, and diet modifications. Adaptive equipment that can be used included the Provale cup. The Provale cup has handles, a lid, and an opening that limits the amount of liquid that comes out with every sip, so if people have trouble with swallowing liquids, this cup will limit the amount of liquid that comes out to only 5mLs. If a person has trouble lifting a cup to their mouth, there is a Giraffe bottle that has a long straw so an individual can just lean forward to take a small sip rather than bringing the cup to mouth.
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, or breathy or strained voice.
Strategies to use for general speech problems include practice with speaking loud, speaking slower, and over exaggerating words. Treatment programs that may be used for those with MSA with speech problems could include LSVT (Lee Silverman Voice Treatment) or Speak Out!.
When general speech therapies are not helpful anymore, sleep language therapists can use a number of additional strategies for people with MSA, such as Augmentative and Alternative Communication (AAC), which are tools or equipment. Low-tech AAC include picture boards with symbols or images representing desired actions or objects. High-tech AAC can be used when someone has increased difficulty with their hands and voice as disease progresses. There are also speech generating devices (SGDs). An example of an SGD is a software or app where a person can indicate a word to communicate. Additional options include voice banking such as using a recording of your voice to create a personalized AI voice for your SGD later. There is also message banking where someone would make a recording such as them telling a joke, or singing happy birthday and then using that recording on demand in the future.
The Q&A portion was very informative as participants had questions regarding insurance and Medicare coverage of the devices. Devices and accessories would be considered durable medical equipment and depending on a person’s insurance, there could be copay or no coverage. A therapist can also assist with finding other funding sources. She encouraged people to not let money be the reason to not pursue to get the devices.
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.