1. What is dysphagia?
The Mayo Clinic defines it as "Difficulty swallowing, [which] means it takes more time and effort to move food or liquid from your mouth to your stomach. Dysphagia may also be associated with pain. In some cases, swallowing may be impossible." The US Government's National Institute of Health (NIH) points out that a result may be "coughing or choking because the food or liquid is entering the windpipe, which is referred to as aspiration. When aspiration is frequent a person can be at risk of developing pneumonia." You can read more from the Mayo Clinic and from NIH's National Institute of Neurological Disorders and Stroke (NINDS) on the definition, assessment, and treatment of swallowing disorders. These resources (along with ASHA's, following) provide the standard of medical practice for the US.
http://www.mayoclinic.org/diseases-conditions/dysphagia/basics/definition/con-20033444
http://www.ninds.nih.gov/disorders/swallowing_disorders/swallowing_disorders.htm#What_is
2 2. How do you pronounce dysphagia?
dis-FAY-juh The American Speech-Language Hearing Association (ASHA) uses three syllables to say the word, buy you may also hear people say dis-FAY-ji-a . Both are noted in Webster's and in Random House, which provide contemporary American pronunciation.
The first link provides further information on the definition, assessment, and treatment of swallowing disorders. It has more details than the links in #1.
http://www.asha.org/public/speech/swallowing/Swallowing-Disorders-in-Adults/#what_r
http://media.merriam-webster.com/soundc11/d/dyspha01.wav (Click on the white triangle to hear the word again.) You can also enter this page from http://www.merriam-webster.com/dictionary/dysphagia (Click the blue speaker-button to hear the pronunciation.)
http://dictionary.reference.com/browse/dysphagia (This entry includes other names for dysphagia.)
Medical literature (articles and article references) on dysphagia
3. When can medication contribute to dysphagia?
Pharmacist KM Balzer's 2000 article surveys articles on ten types of medications responsible for drug-induced dysphagia. The full article will remind you together with your doctor to assess whether adjusting current medications may improve your swallowing. Examples include using vitamin and pill sizes that are less likely to damage the esophagus; finding medications that are less likely to create Parkinson symptoms when treating psychiatric disorders; trying allergy medicine less likely to be associated with dry mouth (xerostomia); and rinsing the mouth more often when taking cancer-treating drugs.
-- NIH's National Institute of Dental and Craniofacial Research (NIDCR)
Although the author wrote the article for the International Journal of MS Care, the ten types of medications apply to everyone, and not just people who have a diagnosis of multiple sclerosis.
http://ijmsc.org/doi/pdf/10.7224/1537-2073-2.1.40
This link shows the publication date and abstract http://ijmsc.org/doi/abs/10.7224/1537-2073-2.1.40
http://www.nidcr.nih.gov/oralhealth/Topics/DryMouth/PublishingImages/DryMouthArt3.gif
4. Has anyone documented success using herbs or acupuncture to improve swallowing?
This is slippery elm
-- US Forest Service
The University of Maryland Medical Center (UMMC) has a resource page on complementary medicine for people with the diagnosis of dysphagia. You can ask your healthcare provider about using herbs with soothing or antispasmodic properties, such as deglycyrrhizinated licorice (DGL) extract, slippery elm, and valerian .This page cites 20 articles to support the efficacy of these herbs, but a few of the articles are not from English-language journals. Although UMMC reports that the studies do not consistently show the benefit of acupuncture,
the NIHS's National Center for Complementary and Integrative Health (NCCIH) mentions that researchers are still exploring the use of acupuncture
to relieve difficulties in swallowing after treatment for head and neck cancer. You and your
healthcare professional may want to keep abreast of what comes of these studies.
http://umm.edu/health/medical/altmed/condition/dysphagia
https://nccih.nih.gov/health/cancer/camcancer.htm
http://www.fs.fed.us/ne/morgantown/4557/gypsymth/pic/975pic.jpg
How to do a particular maneuver or posture (including a video)
5. What exercises can I do to help my swallow?
The University Health Network in Toronto, Canada has a patient education series that includes a video on how to strengthen your swallow.
Ask your health care provider if the demonstration of the Mendelssohn maneuver is appropriate for you. This exercise helps if you need to build up your pharyngeal muscles. This video reminds you to moisten your mouth and to spit out excess liquid before trying out the swallowing exercises.
https://www.youtube.com/channel/UCw-_-hhilOuZn7XYoFRJ1Sw
https://www.youtube.com/watch?v=H4S1Afq4fps
Popular culture tongue mouth icon
Fair use exception, subject to R Stones OK
Georgia Regents University (GRU) health-care system has a handout here that provides written instructions on various exercises to strengthen tongue movement and control when manipulating solids in the mouth.
https://paws.gru.edu/pub/patient-education/adult-info/Documents/O/Oral_tongue_lession.pdf
https://s-media-cache-ak0.pinimg.com/236x/74/fd/58/74fd586f5f825f7bdfee271b588192ab.jpg
Description of the various assessments in dysphagia (including a video)
6. What is it like to have an MBSS (modified barium swallow) to check whether my food and drink is going where it is supposed to go?
This informative and lighthearted video has written captions, many of which are in red, so are easy to read. The author (apparently Bill Schmalfeldt) documents each consistency as he swallows it during the MBSS. The strength of this video is that Mr. Schmalfeldt tracks the reasoning that the clinician used in selecting thicknesses in order to pinpoint the weakness in his epiglottis. There are also well-labeled parts of the swallowing anatomy. The video is from Deep Brain Productions, and has player-piano music in the background which you can turn off if you are not in the mood for music! (To start the video, click on the arrow-icon in the center of the video. You can turn off the music before starting the video or while the video plays. Just click on the speaker button, which is the second icon from the left on the bottom of the video. A small x pops up to the left of the speaker button to show you that the speaker is off. You can re-start the music by clicking on that x.)
https://www.youtube.com/watch?v=hf2kRD85zvc
https://www.youtube.com/channel/UC0VZHNp35kqdsW6dnlkJiZA
Bill is the author of a 2011 book on Young-onset Parkinson disease (YOPD) called "Put on your Parky Face." You can hear him read about his diagnosis here: https://mobile.audible.com/pd/Health-Fitness/Put-On-Your-Parky-Face-The-Expanded-Version-Audiobook/B00NMSMAIC?s=s
Where to order pre-thickened liquids
7. How am I going to find pre-thickened liquids and purees?
A DiagnosTEX Clinical Café' speech-language pathologist, Ronda Polansky, offers a page of ideas and vendors. Her suggestions include using cinnamon, chocolate, colored gelatin powders, and cranberry sauce to add taste and color to purees. For advises piping the cranberry sauce through a pastry bag and using it as a garnish. Her current listing of Commercially Available Pureed Foods includes names with toll-free phone numbers, but lacks information on ordering through a web-site.
PUREE PIZZAZZ
http://dysphagiadiagnostex.com/clinicalcafe/?p=96
Here are two websites (that I can sample) for ordering Cliffdale Farms ™ Pureed Entrées
http://www.4webmed.com/main.cfm?Page=product&id=9883&back=%2Fmanu%2Fmain.cfm%3Fpage%3Dmanuw%26id%3D61
http://www.hormelhealthlabs.com/2colTemplate_product.aspx?page=CO_Cliffdale&cond_id=117&cat_id=118
The dynamic duo at Dysphagia Divas provide information while selling products. They have made a collection of videos on food preparation. Their 6-minute video demonstrates how to use starch, gum, and gel to thicken liquids: Carefully measure, mix, and w-a-i-t (without giving in to the temptation to add more thickener)!
http://www.dysphagia-diet.com/t-dysphagiadivas.aspx
https://www.youtube.com/watch?v=ptSANHpwNMk
Oral Care
8. What can I do to compensate for “dry mouth” (xerostomia)?
Many ASHA clinicians recommend this alcohol-free mouthwash:
biotene mouthwash bottle
Courtesy of
http://www.biotene.com/products/mouthwash
Biotene
See p.50 of this 2011 conference presentation (Caution--downloads automatically as a pdf when you click on the link) http://www.asha.org/Events/convention/handouts/2011/Winter-Chapin for this and more thoughts on oral care, based on the presenters' experience.The NIH tracks published articles, which includes some research supporting that view. Use this search key.
https://www.google.com/search?q=site%3Anih.gov+biotene
Support groups
9. How am I going to get used to dealing with having difficulty with swallowing?
https://twitter.com/nfosd
The Swallowing Disorder Foundation has a facebook page and an events page, as well as a list of almost a dozen support groups that are already established. You can see its account logo, on the left.
http://swallowingdisorderfoundation.com/
https://www.facebook.com/nfosd
http://swallowingdisorderfoundation.com/swallowing-support-groups/
http://swallowingdisorderfoundation.com/news-events/events/
Edward "Rip" Van Winkle has a donation page in which he recounts his feelings relating to, "In 2014, I will enter my 8th year without eating. "
He describes how he misses sharing the food experiences of taste, smell, and friends. He's also asking for money to cover his participation in the UC Davis FDA clinical stem cell research trials.
https://www.giveforward.com/fundraiser/09p3
10. What research is there to help or cure swallowing disorders?
The Swallowing Disorder Foundation has a research page , which includes updates on the stem cell research that its members are funding.
Recent research in the United States includes:
Routine Screening for Eosinophilic Esophagitis in Patients Presenting With Dysphagia
Stimulation of Sensation and Improvement in Swallowing Using Oral Capsaicin
ALS Association: whether Nuedexta® improves speech, swallowing and saliva control in subjects with ALS
You can find a longer list of past clinical trials at https://clinicaltrials.gov/ct2/results?term=dysphagia&pg=1
Here are two sites where you can search for current research trials:
https://clinicaltrials.gov/ct2/results?term=dysphagia&Search=Searc
and http://www.alsconsortium.org/search.php
Fun stuff about dysphagia
How do you say dysphagia en español?
graphic of Spanish question marks
Used with attribution to Drawception.com
Disfagia,
but the word
more commonly used is
deglución ,
according to
NIH's Spanish language webpage.
http://espanol.ninds.nih.gov/trastornos/trastornos_de_la_deglucion.htm
http://drawception.com/panel/drawing/fNZ23336/spanish-question-marks/
Fair use Exception via Pinterest.com
Why might you add these to your next shopping list?
Twizzler licorice sticks
Life Saver candy (with dental floss tied securely through the hole)
Gummy Bear candy (with dental floss tied securely around its neck)
Lollipop – start with a small one (like Dum Dum’s) and
move to larger ones (Tootsie Pops or Blow Pops)
Sour lollipops such as the Jolly Rancher brand (to give extra stimulation to the mouth and to help trigger a swallow)
(The answer is here, with these instructions: Do these exercises for 3 sets of 10 – 3 times per day (this means to do 10 – take break – do 10 take break – do 10 take break, morning, noon, night).
https://paws.gru.edu/pub/patient-education/adult-info/Documents/O/Oral_tongue_lession.pdf
What is the drawing inside the O of the NFOSD logo?
Here's one interpretation!
https://pbs.twimg.com/media/CAukiR1VEAAv31w.jpg:large
Where is the drawing in the title bar from
and where can I find other
drawings of the mouth
related to swallowing?
http://upload.wikimedia.org/wikipedia/commons/thumb/2/20/Sagittalmouth.png/167px-Sagittalmouth.png
https://www.google.com/search?q=images+of+bolus+and+mouth&es_sm=122&tbm=isch&tbo=u&source=univ&sa
