CurePSP (psp.org) hosted a webinar today on the topic of “Speech, Swallowing and Mealtime Questions.” The speaker was expert speech therapist Laura Purcell Verdun.
Though many of the slides shown during today’s webinar are specifically about PSP and CBD, most of the slides were not limited to these two disorders. In addition, speech and swallowing problems occur in all the atypical parkinsonism disorders.
Here are the notes I took during the web-based conference call. Please share your notes as you may have picked up different points than I did.
Robin
Robin’s Notes from
Speech, Swallowing and Mealtime Questions
CurePSP Webinar
February 18, 2009
Presenter: Laura Purcell Verdun, SLP-CCC
([email protected], 703/573-7600 ext 1414)
Definitions:
Dysphagia: difficulty swallowing
Aspiration: food or liquid going into the lungs
Silent aspiration: aspiration without clinical indication (cough, choke)
PSP swallowing difficulties:
difficulty looking down at plate of food
mouth stuffing or rapid drinking (frontal lobe problems)
poor self-feeding due to tremor or rigidity
restricted head and neck posture
hyperextension of head is especially a problem in PSP (food/liquids can go straight down to the lungs)
impaired coordination between swallowing, breathing, and eating
lack of awareness of swallowing
CBD swallowing difficulties:
slow or impaired chewing
apraxia
slowed swallowing movements
Swallowing management:
early evaluation of swallow
frequent monitoring of swallowing function
what are the patient’s goals? (caloric intake, enjoyment, etc)
Swallowing evaluation:
patient/family should bring to meeting info on swallowing/feeding history
Common clinical questions:
do you have trouble swallowing?
do you have excess saliva in your mouth?
do meals take longer to eat?
does food stick to roof of mouth?
do you cough or clear your throat when you drink water or other liquid?
do you have trouble taking medication (pills)?
Warning signs:
drooling
food collecting in mouth
increased effort in swallowing
trouble talking
coughing and choking with a red face (showing it’s a stressful event)
wet voice (gurgly, sounds like someone is talking underwater) – the concern is that saliva is sitting on vocal cords
key: do you cough or choke during mealtimes than during other times of the day?
VFSS = MBSS
Videofluroscopic Swallowing Study = Modified Barium Swallow Study
xray video of swallowing mechanism
important: needs to replicate home feeding environment (example: does patient hold cup at home?)
identify safe swallowing strategies
Oral hygiene – one treatment option:
need scrupulous dental care to get bacteria out of mouth
avoid alcohol, caffeine, and smoking
use club soda or sparkling water to help cut through secretions
Biotene (biotene.com) and Oasis – two good over-the-counter product lines
Plak-Vac oral suction toothbrush (800/325-9044)
Drooling
use prescription anticholinergics such as Scopolamine patch, Robinul, atropine drops
speak with MD about botox injections. Find an MD with experience doing these injections as there is a chance that the injections can worsen the swallow mechanism.
How will swallowing strategies impact the caregiver or family? There can be changes to meal preparation.
Mealtime strategies:
sit upright
limit distractions
clear secretions from mouth prior to eating
put food plate in line of vision
experiment with different plates, utensils, straws, cups, etc. (Sometimes straws can be useful.)
keep chin down
slow, steady rate of ingestion: small bite followed by a swallow
alternate liquid and food swallows
take liquids by teaspoons
no Jello
be sure everyone knows the Heimlich maneuver
supervision during mealtimes
find other ways to nurture person with PSP/CBD
Diet modifications:
stick with moist, tender foods (eg, dark meat chicken, fish, casserole)
blend multiple consistency items
avoid textured, particulate, and dry foods (eg, nuts, cereal)
thickening liquids to slow rate of transit. Problems: may lead to reduced fluid intake; may be harder for lungs to tolerate thickening agents if aspirated
Thickening agents:
commercial thickeners
tofu
potato flakes
VitalStim:
clinical efficacy and utility of this therapy is unproven
Possible indications for alternate nutrition
Things to consider regarding a feeding tube:
discussions should take place sooner rather than later
don’t wait for a crisis!
discussions should be repeated
gastric contents and saliva can be aspirated
no clinical trials to know if feeding tubes are beneficial
Speech:
Change in speech may occur earlier in PSP than CBD
People with PSP and CBD may lose the ability to speak in late stages
Speech terms:
Dysarthria: trouble pronouncing sounds; consistent articulation errors
Dysphonia: difficulty generating a clear, strong voice
Apraxia: inconsistency of errors; speech disorder
Oral apraxia: the inability to perform a task upon command
Progressive non-fluent aphasia (PNFA): simplified formation of sentences
PSP speech:
hypokinetic, spastic dysarthria
palilalia (repeat your own words)
CBD speech:
apraxia of speech and oral apraxia
hypokinetic, spastic dysarthria
often has a component of PNFA
yes-no reversal
PSP speech strategies:
take a good breath before starting to speak
speak up and be deliberate
keep sentences short
repeat entire sentence if necessary, not just one word
use gestures
say one sentence at a time without immediate repetition
LSVT may help (lsvt.org)
CBD speech strategies:
short phrases and simpler language
it may help to use written communication
use gestures
investigate using communication board
Strategies for the listener to utilize:
eliminate distractions, including background noise
face the speaker
keep questions and comments brief
ask one question at a time
stick with one topic at a time
provide choices to ease decision-making (eg, ask “do you want coffee or tea?” vs. “what do you want to drink?”)
Robin’s note about resources: I didn’t take these down because they are largely the same as appeared in a 2008 article authored by Laura Purcell Verdun.
Questions and Answers:
No medication can help with swallowing.
Laura personally does not use VitalStim for any patient population. There is no research on VitalStim in treating neurodegenerative diseases (PD, PSP, etc). Make sure your expectations aren’t misplaced. VitalStim doesn’t address either of Laura’s two priorities in treatment.
Her priorities in treatment are oral hygiene and mealtime management.
Personal voice amplifiers can work if the voice is quiet but the speech is still clear. Could even use a portable Karaoke machine. Other machines: Spokesman, Chattervox (more expensive). [Robin’s note: I couldn’t find the Spokesman or Spoke Man device any place on the web. Hopefully someone can find it. I will email Laura about the correct name.]
Augmentative or assisted communication device. These are machines that are used to communicate for someone. Most devices are computer-based or electronic. How will you access this device? Pointer, eye piece, etc. Are there cognitive problems precluding the use of such devices?
Swallowing problems may occur later in CBD than PSP. Hard to say.
Question: Litvan published a paper in ’01 that showed that on average those with PSP died 18 months after the onset of dysphagia while those with CBD died 49 months after the onset of dysphagia. Is this roughly your experience with survival time as well?
Laura’s answer: those with PSP have dysphagia problems sooner than those with CBD but survival time is probably longer than 18 months for PSP. She hasn’t kept track of survival time.
As soon as a person is diagnosed with one of these disorders, there should be a conversation about whether a feeding tube is desired in the future. This is a very personal decision. Not all MDs are comfortable bringing up this topic. What does the person hope to accomplish in placing a feeding tube? This conversation needs to be repeated later.
A soft, cervical collar may help keep the head up.
Exercises can be of benefit. Apraxia can be aided in speech tasks (repeating words) and in non-speech tasks (blowing out candle, sticking out tongue). She said that apraxia is especially a problem in PSP. (I think she misspoke; she meant to say CBD.)