"Swallowing" Webinar Notes (2/18/09) + "Tools

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"Swallowing" Webinar Notes (2/18/09) + "Tools

Postby Robin » Thu Dec 04, 2008 1:10 am

The Fall '08 CurePSP Magazine has a good article on swallowing problems that may be of interest to everyone. I've copied the full text below. At some point, the newsletter will be available on psp.org; I received it in the mail this week. You can sign up online to receive a copy of future newsletters in the mail: http://www.psp.org/page/magazine

Tools for Meal Time
Laura Purcell Verdun, MA, CCC
Speech-Language Pathologist
Otolaryngology Associates, PC
Fairfax, VA

CurePSP Magazine
Fall 2008 Issue

Difficulty swallowing, or dysphagia, is commonly associated with many neurodegenerative diseases, specifically PSP or CBD. In fact, difficulty swallowing may be one of the early symptoms of this disorder. Given that complications related to difficulty swallowing are one of the most common causes of mortality, attention needs to be directed towards optimizing the ease and safety of swallowing.

What changes in eating and swallowing should we look for?

There are actually fairly typical behavioral changes with eating in PSP and CBD. These often include difficulty looking down at the plate, mouth stuffing and rapid drinking, difficulty with self-feeding because of tremor or stiffness, restricted head and neck posture, and occasional difficulty opening the mouth. These behaviors can make it more difficult to swallow and often contribute to decompensation of the swallowing mechanism resulting in coughing and choking. Caregivers need to look out for these behaviors, because the person with PSP or CBD often is not aware of these changes.

What are some tools that we can use to help make meal times more successful?

1. Use a suction machine, toothette swab (a pink or green sponge on a lollipop-type stick), or mouth rinse prior to meals to clear out secretions which may interfere with ease of swallowing.

2. A firm chair with arms to support sitting upright for proper swallowing alignment is most ideal.

3. Keep the plate in the line of vision, by placing the plate on top of a book or something similar, or substituting reading glasses for bifocals.

4. Try experimenting with different plates and utensils. Plates with higher edges and bottom grips enhance independence with eating. Downsize eating utensils to limit how much food is being put in per mouthful.

5. Experiment with different cups and glasses. Some are just easier to drink out of than others, depending on a handle or even the thickness and shape of the lip. Straws are generally not preferred because it results in acceleration of the liquid into the throat before it's ready.

6. Use a blender or food processor. The goal is not to eliminate foods necessarily, but consider how they could be prepared difficultly to enhance ease and safety of swallowing. Multiple consistency items such as fruit cocktail and broth based soups generally should be avoided, so blend them.

7. A teaspoon can be used to restrict the amount of liquid placed in the mouth for each swallow.

Though clearly not a comprehensive list, here are some specific products that may be of benefit at meal times. Look for other products available on these web sites as well:

Flexi-Cut Cup allows for drinking without extending the head and neck backwards, 3 sizes available (800/225-2610, www.alimed.com).

Provale Cup restricts the volume of liquid allowed per swallow (800/225-2610, www.alimed.com).

Maroon Spoons have a narrow shallow bowl to restrict how much food is placed on the spoon and in the mouth, come in 2 sizes (800/897-3202, www.proedinc.com). [Robin's note: that's the correct website! You can also find these spoons at AliMed.]

Less Mess Spoon is designed with holes to keep food on the spoon, or drain away liquid from a multiple consistency food item (800/257-5376, www.theraproducts.com).

Scooper Plate with Non-Skid Base has a high curve to help scoop food onto a utensil (913/390-0247, www.bindependent.com).

Skidtrol Non-Skid Bowl is a melamine bowl with non-skid base (972/628-7600, www.maddak.com).

Are there any cookbooks that may give us some ideas regarding meal preparation for people with trouble swallowing?

Achilles E and Levin T. The Dysphagia Cookbook. 2003. Cumberland House Publishing.

MEALS for Easy Swallowing. 2005. Muscular Dystrophy Association Publications. [Robin's note: the correct link to this book is http://www.als-mda.org/publications/meals/ The full contents of this book, including the recipes, are available online.]

Weihofen D, Robbins J, Sullivan P. Easy-to-Swallow Easy-to-Chew Cookbook. 2002. John Wiley & Sons, Inc.

Wilson JR and Piper MA. I Can't Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders. 2003. Hunter House, Inc.

Woodruff S and Gilbert-Henderson L. Soft Foods for Easier Eating Cookbook: Recipes for People who have Chewing and Swallowing Difficulties. 2007. Square One Publishers.

If you have any concerns regarding swallowing, be sure to discuss this further with your neurologist and speech pathologist.
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Postby Robin » Wed Feb 18, 2009 9:45 pm

Here are the notes I took during today's (2/18/09) webinar:

Speech, Swallowing and Mealtime Questions
Presenter: Laura Purcell Verdun, SLP-CCC
(lpverdun@yahoo.com, 703/573-7600 ext 1414)

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
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:
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?

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)

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
potato flakes

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

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 the article copied above.

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: Spokeman, Chattervox (more expensive). [Robin's update later on 2/18: Laura provided this URL for info on the Spokeman --

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.)
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Postby Robin » Sat Feb 28, 2009 6:42 pm

This presentation has been posted to the CurePSP website. You can find the PDF here of Laura Purcell Verdun's slides:
http://www.psp.org/doc_library/12356842 ... slides.pdf

Local support group member Virginia followed up with Laura regarding the statement "no Jello." Laura said because Jello dissolves quickly in the mouth, it's a little more difficult to swallow. So she recommends thickeners instead. Also, some of Laura's clients had difficulty with Jello.
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Postby Robin » Thu Apr 02, 2009 4:18 pm

DynaVox has a communication device that operates on the basis of eye blinks and eye movements. It's called the EyeMax. It was featured on the Today Show this Monday, being used by someone with ALS:

I mention this because someone in our local support group is going to rent the EyeMax on a weekly basis to give this a try. Her mother-in-law is no longer able to use her hands to point to letters or pictures (on a letter board or picture board).
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Postby ckiefer » Fri May 07, 2010 1:54 am

I hope that by posting a reply that it puts this back on the front page so that others can find it more readily. Very informative and most helpful. Sure wish there were a way that this and other posts like this could be somewhere that is more easily viewed.

For some of us, time is precious and this information is critical. Thanks for posting.
Diagnosis of PSP November 9, 2007
Age at diagnosis 59
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Joined: Fri Nov 09, 2007 10:07 pm

Re: "Swallowing" Webinar Notes (2/18/09) + "Tools

Postby Robin » Mon Sep 30, 2013 12:03 pm

Went looking today for Spokeman info and found it's now here:
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