“Parkinson’s Disease and Communication” – Webinar Notes

“Parkinson’s Disease and Communication” – Webinar Notes

On February 16th, The American Parkinson Disease Association (APDA) hosted Lisa Sommers to speak about Parkinson’s disease (PD) and communication.  Lisa is the clinic director, Center for Language Speech, and Hearing, University of Massachusetts Amherst.  Lisa discussed the cognitive and communicative changes that happen during the course of PD and their personal impact. She detailed different treatment options such as LSVT Loud and pacing boards. 

Lisa said that 90% of people with PD will experience changes in communication. Areas affected include breath support, voice production (it becomes softer), speed and accuracy (reduced clarity), inflection of voice, and reduced facial expressions (can cause people to seem depressed or disinterested when they actually are not). Medications have not shown to be effective with speech, voice, and swallowing changes associated with PD. Some cognitive changes are attention, memory, executive function ability, language difficulties, and visuo-spatial difficulties. 

For help finding a speech language pathologist or an audiologist, please visit the American Speech-Language-Hearing Association’s page mentioned in the talk.

For more resources on speech and voice therapy, see this Stanford Parkinson’s Community Outreach page.

For more resources on speech and swallowing, see this Stanford Parkinson’s Community Outreach page.

For resources on cognitive changes, see this Stanford Parkinson’s Community Outreach page.

For speech and vocal exercises, see this Stanford Parkinson’s Community Outreach page.

Please see below for notes on the February 16th webinar. The webinar recording might be available at a later date, but I am unsure if a recording was made.

Regards, 

– Joëlle Kuehn


“Parkinson’s Disease and Communication”

Speaker: Lisa Sommers, CCC-SLP, clinic director, Center for Language Speech, and Hearing, University of Massachusetts Amherst

Webinar Host: American Parkinson Disease Association Massachusetts (APDA MA) 

Webinar Date: February 16, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Note: The content provided in this webinar is not a one-size-fits all.  Some people experience things that others don’t and the severity also varies.

Communication changes common with Parkinson’s Disease (PD):

Interesting fact: 90% of people with PD will experience changes in communication

  • Changes such as speech, voice, cognition, and swallowing can be subtle and can fluctuate, and can occur early in the disease process 
  • Areas affected: breath support, voice production (softer), speed and accuracy (reduced clarity), inflection of voice, and reduced facial expressions (can cause people to seem depressed or disinterested when they actually are not)
  • Sensory disconnect – people feel that they aren’t communicating differently, it feels the same as before, and do not notice that they have an issue (“I’m not the one that is too soft, my spouse just needs a hearing aid”).  Hearing a recording can help a person realize this disconnected.
  • Medications have not shown to be effective with speech, voice, and swallowing changes associated with PD

Cognitive changes possible with PD:

  • Paying attention (multitasking) can become harder, such as:
    • Reading A recipe while preparing a meal
    • Talking on the phone while shopping
    • Having a conversation at a party while ignoring the other conversations around you
  • Memory challenges:
    • Learning new skills or new information
    • Learning a new way to do something you’ve always done a certain way
  • Executive functions can become more difficult:
    • Planning, managing and completing complex tasks (finances, medical appointments, med management)
    • Decision making
    • starting/stopping/switching tasks
    • Managing emotions
  • Language difficulties
    • Difficulty thinking of words quickly, especially in conversation and during dual-tasking
    • Expressive language issues are complicated by the motor challenges required to express thoughts and feelings (i.e. soft voice, small handwriting).  Need to try to speak louder, or write larger.
    • Slowed auditory processing – not a hearing loss, but processing slower and responding slower
  • Visuo-spatial difficulties
    • Difficulty keeping place when reading, shifting visual attraction (like reading music and lyrics simultaneously), visual analysis and synthesis (such as complex visual games)

Other things that impact communication:

  • Depression
  • Anxiety
  • Apathy
  • Medication related problems
  • Sleep disturbances
  • Hearing loss – is important but often underestimated or not discussed

Note: treating any of the above issues can potentially positively impact cognitive functioning

Hearing loss and cognition:

  • 1 of 3 adults aged 65+ have hearing loss. Increases to 2 of 3 by age 70+
  • Among adults 70+ with “aidable” hearing loss, only around 30% use hearing aids
  • Recent study shows that hearing loss is linked to cognitive decline and increased risk of cognitive impairment, including dementia.  Don’t know the exact nature of link between hearing loss and cognitive decline yet though 

Hearing loss may lead to:

  • Sensory deprivation
  • Social isolation and depression
  • Increased cognitive effort to go through the world

Personal impact of communication and cognitive changes:

  • Frustration
  • Changes in routines due to decreased ability (sometimes gradual decline).  Can’t go through the drive through anymore because the people taking the order can not hear the person with PD, stop taking on the telephone with people, etc.
  • Sarcasm or humor is misunderstood (facial expression is decreasing and voice is monotone)
  • People who are still working report decreased job performance or others perception of their performance
  • May curtail normal activities, like volunteering, social clubs
  • Impact on self-image, risk for depression/apathy from feeling isolated
  • At risk for social isolation that can happen gradually but insidiously.  Can start with small things such as no longer sitting and talking at a dinner party, just letting others do the talking

Seeking early treatment is the best possible thing you can do. Do not wait until you are having significant issues being understood by others. 

Evidence based treatments:

  • Best outcome is a combination of research evidence, patient values, and clinical expertise. 
  • Working with a speech language pathologist for speech therapy is helpful

Treatments focusing on speech and voice:

  • Speech-language pathology (SLP) services
    • LSVT LOUD (lsvtglobal.com) – voice treatment specifically for PD
      • Focus on voice specifically
      • Individualized for the patient
        • Standard voice exercises but also additional customized activities that are functional for you (what you need to be able to do better)
      • Intense
      • Has been studied well in terms of dosage – intensity of treatment approach matters 
        • 4x/week for 4 weeks yields best treatment outcomes according to research
      • Can be in-person or via telepractice with similar outcomes to in-person services
    • SpeechVive (speechvive.com)
      • External device worn in the ear
      • Works on Lombard effect – reflex that we have that when we are in a noisy environment, we raise our voice when speaking 
      • SpeechVive introduces background noise (not to level where it impacts hearing), but it does trigger the Lombard effect
      • Trained speech pathologist needs to calibrate device for you
      • Requires person to put effort in voice similar to LSVT LOUD
    • Voice amplifiers 
      • Complementary to other treatment
    • Pacing boards
      • Regulate rate of speech
    • Augmentative & Alternative Communication
      • For higher levels of impairment where a person is not able to communicate verbally

Not a therapy, but singing can be helpful too. It needs to be done in combination with a different therapy

What to look for in Speech-language pathology (SLP) services:

  • Intensity is important to manage speech and voice symptoms
  • Individualized and relationship-based
    • Focused on what do you need
    • Have a good relationship with the therapist
  • Exclusively focused on voice
  • Ideally, speech-language pathologist should have advanced training and certifications
  • Focus on function
    • Everyday communication that is meaningful to you
    • Focus on what communication situations are important to you as an individual
  • Evidence based
  • Beneficial to all severity levels but best to be at least evaluated (if not treated) very early after diagnosis (even if you think you sound fine)
    • Report subtle changes to doctors
    • Think about subtle changes you may be having
  • SLPs are available to you across continuum of services and throughout the years of your treatment (evaluations, treatment, re-evaluations, collaborate with other medical professionals) and they can treat speech, voice, cognition, swallowing etc
  • Virtual sessions are very effective but they require good wifi signal, camera must be on, microphone working, someone on your end to help if technology is challenging

Treatments for cognitive and language issues/challenges:

  • Report any changes in cognition to your movement disorder specialist
  • Neuropsychological assessment may be recommended
  • SLP Services include: cognitive-linguistic evaluation, retraining, compensatory strategy training (isn’t as intensive as voice therapy but it is solution focused and shorter)

Strategies to assist someone with expressive difficulties (and possibly a mask):

  • Give your undivided attention
  • Use context
  • Tell them with you did understand
  • Wait
  • Don’t interrupt
  • Work around off-periods for important discussions
  • Use yes/no questions
  • Restate the message and clarify
  • Be honest – don’t fake comprehension
  • Ask to verbalize feelings
  • Model expressiveness

Strategies for assisting someone who is having difficulty hearing or comprehending:

  • Slow down rate of speech, but not too slow
  • Beware of “elderspeak” perception
  • Strategic pauses
  • Increase your volume but keep it natural (don’t yell)
  • Face the person, be in good lighting
  • Shorten sentence length
  • Avoid grammatically complex sentences
  • Put details in writing
  • Restate and rephrase
  • Use nonverbals whenever possible

Question & Answer: 

Question: I have rapid speech, and it’s hard to slow down. Do you have any recommendations?

Answer: Talk to a speech language pathologist, and try LSVT and combine with a pacing board if it isn’t enough. 

Question: I participated in a choir but after a fall I haven’t been able to go back. Any recommendations other than getting involved in a virtual type choral group?

Answer: It depends on what else is going on with the person’s communication skills. Singing can be a compliment to skilled services. If you are experiencing problems with communication, try speech pathologist services virtually. Many insurances (including MediCare) are covering telecare now. 

Question:  I had vocal cord surgery and my voice improved significantly, however articulation has become a problem. Is there something specifically I should be looking for in a speech therapist?

Answer: It should be someone who understands the link between the voice and speech, and is willing to try different treatment combinations if someone is needing something in addition to LSVT. Pacing could be a helpful extra technique.

Question: Who writes the referral for a speech therapist?

Answer: It can be your Primary care physician, movement disorder specialist, or neurologist. A physician’s order is all that is needed. The order should say “speech language pathology evaluation and treatment,” and doesn’t have to say LSVT specifically or other treatments, but the physician can put it in the order if they want as well. 

Question: Is it possible to get a speech tune-up?

Answer: Yes, it’s a common thing to happen in PD.