Though this CurePSP webinar was promoted as being about PSP, CBD, and MSA, very little of the info was disorder-specific.
The CurePSP webinar was presented by Laura Purcell Verdun, a speech-language pathologist who is experienced at treating those with movement disorders. The topics were speech and swallowing problems. The presentation was designed around some questions she had received in advance. It was a terrific webinar.
There are three sources of info on the webinar:
1- The presenter's slides have been posted to the CurePSP website:
http://psp.org/includes/downloads/inars ... eries1.pdf
2- The webinar was recorded, and the recording has been posted to the CurePSP website:
http://psp.org/includes/downloads/spweb ... series.wmv
3- My notes below. (I've added topic headings and grouped the questions/answers by topic.)
Speech and Swallowing Q&A for PSP, CBD, and MSA
Webinar presented by: Laura Purcell Verdun, speech/language pathologist
(Laura's email address is email@example.com
PSP, CBD, and MSA are rare aggressive neurodegenerative diseases that will impact swallowing and communication abilities at some point in the disease progression. Management of swallowing and speech disorders in these circumstances requires changing intervention strategies as the disease progresses.
Is choking a bad thing?
* Sign that the timing, coordination or strength of the swallow mechanism may be changing
* Sign that material (food, liquids, saliva) may be "going down the wrong way"
* Not comfortable and potentially scary
* Receive instructions on the Heimlich Maneuver
Why does someone choke only when eating soup?
* Broth is considered a thin liquid, which move faster than any other consistency. If the swallowing mechanism is moving slowly, airway protection may be delayed.
* Soups, particularly, broth-based, are multiple-consistency items. It's hard for the swallow mechanism to manage the thin liquids, and the solids that need to be chewed, at the same time.
* Options: use cream-based soups (denser consistency so they move slower) or blend soups so they are one consistency
What is a swallowing study?
One type is called VFSS (videofluoroscopic swallowing study)
* this type may also be called MBSS (modified barium swallowing study)
* video xray of eating and drinking
* presented with various consistencies and volumes of food/liquids/pills
* defines present level of swallowing function compared to normal
* guides therapy efforts
Another type is called FEES (feberoptic endoscopic swallowing study)
* swallowing is examined via a flexible nasoendoscope
Do I need to have a swallowing study?
* Not necessarily
* For the swallowing study to be most revealing, it should reflect the home eating environment. Specific foods, self-feeding, straws, etc. Bring in 1-2 food/liquid items that have proven to be most problematic.
* Too often the swallowing study illustrates "you're swallowing fine" because the swallowing study is a very controlled environment
* This study defines the extent of the swallowing problem and what is to be done about it
What is aspiration?
* Aspiration is when saliva, food, or liquids travel below the vocal folds into the airway (trachea)
* All these items should travel through the throat (pharynx) directly to the food tube (esophagus) to the stomach
* Chronic aspiration may cause aspiration pneumonia, an infection in the lungs
How do I know if I am aspirating? Will the impact on my lungs be immediate? Will I feel discomfort before pneumonia sets in?
* May not know you are aspirating. "Silent aspiration" is when food, liquids, or saliva go down the "wrong way" without any outward sign.
* Only way to confirmation aspiration is by testing. Tests include chest xray, swallowing study, etc.
* Effects may or may not be immediate but may be cumulative
* Monitor for chronic low grade fever, increased chest congestion, and coughing (especially coughing that occurs more during mealtimes than at other times of the day)
* Discomfort most likely to arise from coughing
Is it possible to have aspiration for liquids without dysarthria?
* Dysarthria = when there is difficulty pronouncing sounds, consistent articulation errors, often with muscle weakness and discoordination
* In these neurodegenerative disorders, these two symptoms (dysarthria and dysphagia) often develop alongside each other
* Once dysarthria is present, there is also concern for changes in swallowing because many of the same muscles and nerves are involved
Who is at risk for aspiration pneumonia? (From Langmore, et al. Dysphagia 1998.)
* Altered mental status
* Advanced age
* Presence of a feeding tube
* Prior history of aspiration pneumonia
* Physical immobility
* Feeding dependence
* Poor oral hygiene
Do thickeners taste OK?
* They change the consistency of the liquid or food item, not the flavor
* Commercial thickeners come in two types -- powder and gel. Powder = Thick-It, Thick-It 2, Thicken Up, NutraThik, Thicken Right, etc. Gel = Hydra-Aid, SimplyThick (good choice if you are dealing with diabetes because it's not starch-based).
* Pre-thickened liquids from Aqua Thick, Thick&Easy Drinks, etc,
Sources for commercially-available thickeners: [Robin's note: start with these websites and then enter the name of the product in the search box]
ThickenUp (from Resource): nestle-nutrition.com
Thick & Easy: hormelhealthlabs.com
Aqua Thick: cwimedical.com
A good online medical supply store (for thickeners and other items): brucemedical.com
Are there other ways to thicken without commercial thickeners?
* Yes: oatmeal, gelatin, fruit purees, blend in frozen fruits, bananas, banana flakes (available at health food stores), potato flakes, Silken tofu (soft)
* Blend vegetable soups to thicken them
* I don't recommend eating JellO in the presence of swallowing problems. In my experience, JellO is very problematic to swallow.
More thoughts about thickened liquids:
* May not be tolerated well by lungs if aspirated
* May contribute to reduction in fluid intake such that you can become dehydrated
* Not entirely clear how well water is absorbed in the gut from thickened liquids
* Quality of life considerations
DELAY IN SWALLOWING
What does someone hold foods/liquids in her mouth for 15-20 seconds before swallowing?
* Could be related to changes in the neurophysiology of the swallow mechanism, or cognition, including apraxia or impaired sensation.
* Suggested approach to dealing with this situation:
- stick with food/liquid items where this seems to be less of an issue
- verbal cues may help ("go ahead and swallow") but don't rush someone
- manually apply pressure under base of tongue moving forward may trigger swallow
* Meal times should be limited to anywhere from 30-60 minutes. Consider smaller, more frequent meals.
* Concern is for expending more calories trying to eat than consuming
What meals are appropriate for a swallowing disorder?
* Maintain a balanced diet
* Don't necessarily eliminate foods but prepare foods differently to enhance ease and safety of swallowing
* Stick with moist and tender foods, such as dark meat chicken, fish, casseroles, pastas, stews, cooked vegetables, canned fruit, etc.
* Use condiments, gravies, or sauces to lubricate foods
* Avoid highly textured, particulate (something that breaks into pieces), and dry foods, such as red meats, rice, corn, firm breads, crackers, nuts, popcorn, etc.
* Meats cooked medium rare may be more tender than something well done
* Blend multiple consistency items such as fruit *, broth-based soups, oranges, watermelon, cold cereal. (Example: If you are eating a bowl of Cheerios, let the Cheerios sit to soak up milk, then pour off the remaining milk, and eat the soggy Cheerios.)
* Foods may need to be pureed in advanced stages of swallowing difficulties
* Try foods/liquids of different temperatures
* Try carbonated liquids, sparkling vs. still water
* Consider more frequent, smaller meals
* Consider use of nutritional supplements (Ensure, Boost, Carnation Instant Breakfast, Scandishake, etc)
The Dysphagia Cookbook, 2003
Meals for Easy Swallowing, 2005. See: als-mda.org/publications/meals
Easy-to-Swallow Easy-to-Chew Cookbook, 2002
Soft Foods for Easier Eating Cookbook: Recipes for People who have Chewing and Swallowing Difficulties, 2007.
I Can't Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders, 2003.
Swallowing and feeding products:
* Flexi-Cut Cup and Provale Cup: from alimed.com
* Independence Spillproof Flo Tumbler: from kcup.com
* Wedge Cup: from wedgecup.net
* Maroon Spoons: from proedinc.com
* Scooper Plate with Non-Skid Base: from bindependent.com
* Skidtrol Non-Skid Bowl: from maddak.com
* A variety of products from Bruce Medical Supply: brucemedical.com
Swallowing tips that families or other speech therapists have offered:
* Place a digital picture frame with audio on the dining table. Play recorded messages for mealtimes that say "eat slow, one bite at a time, small sips" etc.
* Add bananas to thicken smoothies
* Use Fla-vor-ice tubes. Empty the contents, fill with water or OJ, and position upright and freeze
Will using a straw help with swallowing?
* I can go both ways on this. Using a straw can be problematic because it can accelerate the liquid to the back of the mouth/throat. Another issue is that you are sucking in at the same time, your airway is still open. But a straw may be beneficial because you can limit intake. Sip - hold for a second in the mouth (letting the throat catch up) - then swallow. Some people do better by using a straw rather than drinking from a cup. Some people get a rhythm going using a straw and taking multiple swallows.
* This can be evaluated during a swallow study
How can we plan ahead for swallowing problems in the future?
* No talking and eating/drinking at the same time
* Monitor for mouth stuffing and chugalugging liquids
* Take time to eat
If a family member with PSP is gaining weight, is it OK to exceed 30 minutes for mealtimes?
* I've seen weight gain in PSP, not in CBD or MSA. In PSP, there's a tendency towards disinhibition, including rapid drinking and rapid eating.
* This isn't a concern from a swallowing point of view. It may be an issue for ambulation -- both the patient getting around and the caregiver helping the patient.
* Goal should be to keep weight stable
I started taking nortriptyline, an antidepressant. It seems to have helped my swallowing. Could this be the case?
* Would suspect that improvement is not related to the medication
* This medication may dry up secretions somewhat
* Discuss with your neurologist
What is Vital-Stim? Will it help persons with these diseases?
* Reports to apply small electrical current to stimulate the muscles responsible for swallowing
* Must be prescribed by an MD
* Limited data, no studies specific to neurodegenerative diseases except for one very limited study with MS. Clinical efficacy and utility of this therapy remains inconclusive.
* I don't recommend VitalStim for these populations
When might a feeding tube be indicated?
* Recurrent aspiration pneumonia
* Reduced enjoyment of mealtimes
* Increased duration of mealtimes such that you are burning more calories than you are getting in
* Progressive weight loss or dehydration, despite optimizing feeding situation
* Trouble swallowing coexisting with depressed alertness
* Evidence of significant silent aspiration with swallowing study or other clinical evidence of frequent aspiration
What do I need to consider about a feeding tube:
* Discussions need to take place sooner rather than later, and repeated frequently. Prefer to initiate discussions prior to a health crisis. Patient and family should agree in advance with the doctor about what is hoped to be accomplished from trying a feeding tube. Decisions must revolve around assessment of burdens and benefits. Requires value judgments and consideration of quality of life.
* Gastric contents and saliva can still be aspirated
* Feeding tube placement does not preclude oral intake
* No randomized controlled research trials to indicate whether tube feeding is beneficial compared to continuation of oral feeding for survival
How important is oral hygiene?
* Very important
* Goal is to keep mucosa of the mouth clean and moist to minimize bacteria of the mouth.
* If the mouth is moist, it's easier to swallow
* May be increased incidence of aspiration pneumonia in those with poor oral hygiene in the setting of swallowing difficulties
What should I do for oral hygiene?
* Scrupulous dental care (visit dentist, changing to a better toothbrush)
* Avoid smoking, alcohol (including mouthwashes that contain alcohol), and caffeine. Alcohol and caffeine may dry the mucosa of the mouth.
* Drink plenty of water throughout the day
* Minimize non-cooked dairy products as these may thicken secretions
* Rinse out mouth after meals
* Club soda or sparkling water may help cut through secretions
* Avoid gels and mouthwashes that contain alcohol, menthol, or whitening products
* Nighttime humidifier at bedside as these keep the mouth, nose, and throat mucosa moist. Keep them clean.
* Consider a suction machine, in later stages. One drawback is that the more you use the machine, the more the nose and throat get dried out, thereby causing the body to produce more secretions. A suction machine may be helpful to clear the mouth before meals.
* Make sure dentures are clean and well-fitting
* Consult with a dentist
Oral care products:
* Biotene: toothpaste, mouthwash, and Oral Balance Moisturizing Liquid; products contain three primary enzymes that boost and replenish salivary defenses; available at Target, WalMart, etc.; biotene.com; 800/922-5856
* Oasis moisturing mouthwash
* Plak-Vac Suction Toothbrush: 800/325-9044; trademarkmedical.com/personal/personal-oral.html
* Toothette Swabs: dental hygienists say that they aren't good for cleaning out the mouth because they aren't abrasive enough
How effective are WaterPiks?
* Helpful in getting out large particles.
* I don't know if they are abrasive enough to clean enamel and plaques. I view this as a supplement to brushing.
* Also, if someone has swallowing problems, I don't know if they can tolerate a WaterPik.
Is speech and swallowing therapy efficacious?
* Depends on circumstances and what is trying to be accomplished
* Efficacy of exercise is difficult to document given variable rates of progression
* Some studies describe longitudinal progression of speech and swallowing dysfunction. (Goetz, et al, Neurology 2003. Muller, et al, Archives of Neurology 2001.)
* Very few studies regarding treatment of speech and swallowing in these populations. (Article by Countryman, et al, Journal of Medical Speech Pathology 1994.)
What is LSVT (Lee Silverman Voice Treatment)?
* Proven to significantly improve voice quality in PD. Relevant to our discussion tonight given the similar symptomatology.
* Very specific, intensive treatment program emphasizing LOUD speech. A loud voice generates improved respiratory support, articulation, and facial expression/animation.
* Developed by Lorraine Ramig, PhD
Should I keep doing LSVT forever?
* Specific to these populations, yes...whether it is LSVT or some other form of speech therapy
* Exercises should be maintained daily
* These are progressive disorders. Communication will deteriorate over time.
* Speech therapy is of limited benefit if those skills learned are not maintained outside the clinic
Will LSVT help my swallowing?
* One report (Sharkawi, et al, JNNP 2002) showed some improved swallowing movements in patients with PD. The disorders we are talking about tonight exhibit some similar deficits.
* LSVT hasn't been studied in these populations
A family member completed speech therapy almost a year ago. Now his speech has declined. Is it possible to improve a second time?
* This is a common scenario. This raises the issue of whether direct speech therapy should be considered in the first place, and what techniques specifically should be addressed.
* It's best to intervene early. Late-stage interventions are often frustrating.
* Emphasis should be placed on functional communication
* Improvement could be possible. The issue is: can it be maintained? That's likely to be more difficult as the communication impairment has progressed over time.
I have MSA and I've taken speech therapy yet my speech is bad and gets worse. Is practice over time very helpful?
* Exercise does not appear to be contraindicated in these three disorders
* Whether practice helps depends on: severity of speech impairment and effect on overall speech intelligibility, state of underlying disease process, specific exercises you are doing
* A trial of speech therapy (a couple of visits) to investigate stimulability is often reasonable. Can you carry over what you've learned?
* Emphasis should be placed on improved speech in the home environment. You may need to consider assistive communication.
When is speech therapy covered by Medicare or other insurance? I was told that with PSP, speech therapy wouldn't improve my speech, so the expenses wouldn't be covered.
* 2010 Medicare cap is $1860 for combined speech and physical therapy, and a separate $1860 for occupational therapy
* asha.org has two good resources on insurance coverage:
* Depends on what the goals are for speech therapy. Are you focusing on speech restoration or speech compensation (trying to make adjustments and optimize the abilities you presently have)? Are you looking at direct speech therapy or assistive communication?
Is the $1860 cap for one-year or a lifetime?
* It's an annual cap
* It often times gets adjusted from year to year
I can only speak in a 2-word whisper. What exercises should I do?
* Need to determine why the voice is so weak. Get an exam by an ENT and a speech pathologist.
* Options: if speech remains relatively intact, try LSVT. And consider a personal voice amplifier. (Example - Chattervox from chattervox.com)
Will breathing exercises help to strengthen my weak voice?
* Taking a breath prior to speech is almost always beneficial. ("Take a breath and tell me what you want for dinner")
* Inspiratory and expiratory muscle training can improve respiratory muscle strength and endurance. But will this change voice and speech production? Not so, for one MS study.
Is there a procedure to help the voice work better?
* Weakness of voice is common. This is attributed to vocal fold atrophy and weakness of respiratory drive to keep vocal folds vibrating and project the voice. (With atrophy, the muscles of the vocal folds are thinner and weaker.)
* Vocal fold augmentation is a procedure where a filler is injected into the vocal folds to bulk them up. Makes it easier to vocal folds to vibrate against one another. Variable benefit in these populations. There are no studies. Two things that indicate if you would more likely benefit: if you have strong breathing muscles and if the problem is with voice rather than speech. See adiesse-voice.com for info on the most common filler.
EMST (expiratory muscle strength training)
* Was found to be helpful to increase cough and swallowing in PD
* Dr. Sapienza (Univ of FL) is presently doing a study with PD and MS. [Robin's note: In 2009, Dr. Sapienza was also studying EMST in PSP. I will follow up with her because she was going to send me the preliminary data.]
* Device called Aspirate EMST 150. Available as aspireproducts.org. Simple to use and maintain. There is a specific routine that is recommended.
* I don't know if this would be of benefit but it has the potential to help
Is there anything else I can do to improve my speech so others will be able to understand me?
* Is it a problem with the voice, meaning the sound source, or the speech, meaning how you pronounce words?
* Make sure to have listener's attention
* Provide context upfront. Example: "I want to talk about what's for dinner."
* Optimize environment. Turn down radio, turn down TV, put your newspaper down.
* Communication is a two-way street
* Make sure hearing impairments are addressed
* Speak slowly
* Exaggerate speech and mouth movements
* Do not trail off -- pronounce all sounds. Voice must be strong from beginning to end.
* Space between words
* Be more forceful with speech
* Use a minimum, yes-no system
What do I need to consider with assistive communication?
* Is this serving as the primary means of communication or to supplement speech?
* With whom will you need to communicate?
* What type of info needs to be communicated?
* How will you access the device? (physical capabilities, visual capabilities)
* Any cognitive limitations?
* What type of environment?
* Consider safety within the home or outside the home. Medic-alert system.
What assistive communication options are available?
* Two system types: unaided (rely on the person to convey the message through gestures, sign language, etc) and aided systems (relies on the use of equipment or tools)
* Aided systems range from low-tech (paper, dry erase board, communication board) to high-tech (speech generating devices or written output; electronic or software-based devices using pictures, words or phrases to create messages)
How will someone communicate when he can no longer talk?
* Speak with your speech pathologist to investigate these resources
* Alphabet supplementation with an "alphabet board." Speaker points to the first letter of each word spoken. Or, can spell the entire message.
* Communication board. One example is a WordPower OnBoard, which is a manual communication board composed of the 100 most common English words. There's an alphabet board on one side. The other side can be customized. Available from: store.mayer-johnson.com/us/word-power-onboard.html
* Written-choice communication. Requires partner support. Partner establishes the context or question, and written choices. Partner writes down "milk - coffee - Coke" and asks "What would you like to drink?"
* iPhone, iPad, and iPod application called Proloquo2Go. Preset communication buttons. Text to speech. Save customized sayings. iPhone and iPod are harder to use because they are smaller. proloquo2go.com. Might be $190.
* Lightwriter (toby-churchill.com) or Dynavox (dynavoxtech.com): portable text to speech communication aids.
Will insurance cover a speech generating device (SGD)?
* Yes, Medicare provides benefits for all currently available digitized speech output devices
* There are two good resources on insurance coverage:
* Consult with your speech pathologist to determine if this will be helpful and which one to get
AAC online resources:
Have you had any experience using an electrolarynx to improve speech?
* This is a battery-operated device used primarily in those who have lost their voice/larynx to cancer. The hand-held vibrating head provides a sound source.
* Listen to a sample of this computer-sounded voice at: webwhispers.org/library/BobAL.mp3
* Requires hand coordination for neck placement and on-off, as well as relatively intact speech
* Not typically indicated
* I have ever used this device in this population
FINDING A SPEECH PATHOLOGIST
How do I find a speech pathologist?
* Find someone who is ASHA certified (asha.org/findpro) and state-licensed
* LSVT: lsvtglobal.com
* Movement Disorders Society: movementdisorders.org
* APDA: apdaparkinson.org [Robin's note: the Information & Referral Center in your local area may have a list of speech pathologists who work with those with Parkinson's Disease.]
* NPF: parkinson.org [Robin's note: click on "Find Local Resources" at the top.]
* Ask your neurologist for a referral to a speech language pathologist. Ideally, look for an SLP with experience in movement disorders or any neurodegenerative population.
* Consult with your MD and speech pathologist to tailor a program specific to your needs
* Continue to follow-up with them
These flyers will be available in the near future through CurePSP:
* designed for speech language pathologists ("what every SLP should know..."), OTs, and PTs
* on PSP, CBD, and MSA
* you can get them for your SLP, PT, and OT
* available through Trish Caruana, MSW, firstname.lastname@example.org