I am a Dysphagia Specialist and hold my BCS-S. I am certified in MBSImP, LSVT LOUD and MDTP. I am a co-author of Dysphagia2Go and a fan of technology. I am dysphagiarmblng on Twitter and creator of 3 Facebook groups on Dysphagia.~~~"Death is caused by swallowing small amounts of saliva over a long period of time." George Carlin
As a Speech Pathologist, I have always been on the clinician side, working with patients with dysphagia. I have, of course, had my times when I aspirated this or that, and thought, how do people go through this so often?? It is painful!
I started a couple of Facebook Dysphagia groups a few years back. I decided that people who have dysphagia and their loved ones deserve a place to connect so I created the Dysphagia Support group.
The group centers around people who have dysphagia or parents/caregivers of others with dysphagia. It has been a place to go for questions or to share experiences. One of the most active members of the group is Karly.
Karly has offered great support and words of encouragement for others. She blogs about her experiences and she has an article published through the National Foundation of Swallowing Disorders. You can find the link for both below.
Below is a message from Karly. I would love to start a part of my blog dedicated to people with swallowing difficulties to share their stories and experiences!
"Two years on, and I’m still struggling with dysphagia. This has been the toughest thing I’ve ever been through. With everything I go through in life, I always make it my goal to reach out to others who are going through the same thing. I am doing this when it comes to my dysphagia too. A lot of this is done through Facebook support groups.
A long while back, I came across an amazing dysphagia website. I have interacted with a few professionals from the site and they are lovely. I decided I wanted to give something back to them. I did this by writing an article which was put up on their website. I got some responses from other people who are struggling with dysphagia and it helped me to have that kind of interaction.
Dysphagia isn’t just about swallowing. It can affect us in so many different ways. I have a blog to display this. I share what I go through, the good, the bad and all things in-between. I’m not very consistent with my blogs. It’s something I have to be ‘’in the mood’’ for. It can be hard for me to reflect on things, so I blog spontaneously.
My dysphagia is so self-limiting. As I can only manage liquids, I don’t have enough energy to do the things I want to or lead a normal life to put it basically. It’s a really hard thing for me to think about.
I don’t know what my dysphagia is. I think that is the scariest thought of all because it means I don’t know how to make it better and start my life.
Sharing your lived experiences can be one of the hardest things to do but it is the most powerful. I don’t want anyone to have to go through something like this alone. This is my biggest motivator for sharing my journey with dysphagia.
If you’d like to know more about me and my dysphagia, click on the links below.
One thing that has become completely apparent through social media is that there seems to be a great divide amongst researchers and clinicians.
There are the people that swear if one more person asks them to present the article providing the research to the technique they are recommending..........
The truth is we live in a world of Evidence-Based Practice (EBP). Somewhere along the line, EBP became peer-reviewed research articles published in a relevant journal.
ASHA defines EBP as:
Evidence-Based Practice (EBP)
The goal of EBP is the integration of: (a) clinical expertise/expert opinion, (b) external scientific evidence, and (c) client/patient/caregiver perspectives to provide high-quality services reflecting the interests, values, needs, and choices of the individuals we serve. Conceptually, the trilateral principles forming the bases for EBP can be represented through a simple figure: Read more about EBP.
We do need published research to support what we do. The trouble is, techniques we try using our general knowledge and clinical expertise may be something we try during a session. It may be something that comes to us as we sit and work with a patient or client, however we really don't have the time to sit and wait for the research to be funded, proposed, completed, peer reviewed and published.
Listening to our patients can be very revealing in what works and doesn't work for them. Not sitting and listening to the patient and saying, "Well, the research said this would work." It may not work for the particular patient.
Honing in on our clinical skills is pertinent to our profession. You may read an article and think, that might work for my patient if I change x, y, and or z factor.
Research is a part of EBP. The studies are great to have and the studies definitely support what we do as a Speech Language Pathologist (SLP). I, personally, deeply admire those that complete research in our field.
One obstacle I find with research is that I can't always exactly replicate a study. Does that mean, if I use a substitution that I'm not following the peer-reviewed published research?
We need to let research guide us in our decision-making skills when assessing and formulating that ever-evolving treatment plan for a patient.
We also need to use our hard-earned clinical skills that we all worked so hard to earn!
I failed the #thickenedliquidchallenge. When I say failed, I mean 3 drinks in and I was done. By drinks I don't mean cups, I mean 3 swallows. The message from this: Please, do not put me on honey thickliquids as I will only take 3 drinks.
In this failure, I did as I pledged. I donated to the National Foundation of Swallowing Disorders (NFOSD). I donated to fund a new future webinar because learning and education is so important!So was my failure really a success? It depends on your point of view.
Did you take the #thickenedliquidchallenge? Were you able to drink honey thick liquids for 12 hours? Did you donate to the NFOSD?
In an effort to become healthier and to decrease the use of thickeners for liquids, many are turning to more natural thickening agents.I have seen recommendations for using chia seeds to thicken drinks. This article may cause you to reconsider that recommendation or at least give you some food for thought.
What are your thoughts on thickened liquids and what do you use as alternatives for thickeners?
I don't know about everybody else, but I was extremely excited to see the #thickenedliquidchallenge when it popped up on my Twitter feed. The first thing I thought was, what an amazing way to raise awareness for dysphagia! I continue to see so many who simply don't know what dysphagia is.
I recently had a conversation with a friend and colleague via Twitter who questioned the #thickenedliquidchallenge. Her concern is that we see so many of the videos where people are making faces and almost making it amusing. Her main concern is that there are people out there that NEED thickened liquids and perhaps physicians will see these videos and decide to stop ordering thickened liquids.
There are absolutely many concerns we need to think of when we think about and look into thickened liquids.
Hydration-How many of our patients on thickened liquids simply choose to stop drinking. They either don't like the taste or they don't like the texture. Most would do anything for a glass of regular water. We know dehydration leads to so many other issues including xerostomia, urinary tract infection, cognitive deficits, etc.
Risk of aspiration-Many studies have shown that thickened liquids do in fact slow the bolus. The thicker substance typically gives the patient more control of the bolus. Many studies have also found an increase of pharyngeal residue with these thickened liquids with concern for aspiration after the swallow. Logemann, et al found that patients have a greater mortality rate with aspiration of thickened liquids vs. regular liquids.
As a Speech-Language Pathologist, we must be cognizant of what we recommend for our patients. Instead of always just jumping to thickened liquids, what else can we try? What are all the factors with this patient?
Thickened liquids can have value in rehabilitation of the swallow. There is evidence to support the use of a heavier or thicker bolus to increase muscle function during the swallow. Thickening liquids can be a great way to add a little weight to the bolus.
I would encourage everyone to use this #thickenedliquidchallenge as a means of educating others regarding dysphagia. Don't just try the liquid, say it is gross and swear off thickened liquids. We need to educate everyone on why we use thickened liquids. Not just because that's what we were told to do.
Logemann, Jeri A., et al. "A randomized study of three interventions for aspiration of thin liquids in patients with dementia or Parkinson’s disease."Journal of Speech, Language, and Hearing Research 51.1 (2008): 173-183.
Steele CM, Miller AJ. Sensory Input Pathways and Mechanisms in Swallowing: A Review. Dysphagia (2010) 25: 323-333.
Steele CM, et al. The Influence of Food Texture and Liquid ConsistencyModification on Swallowing Physiology and Function: A Systematic Review. Dysphagia DOI: 10.1007/s00455-014-9578-x.
Steele CM, Lieshad P. Influence of Bolus Consistency on Lingual Behaviors inSequential Swallow. Dysphagia 19: 192-206 (2004).
Garcia JM, Chambers E. Insights Into Practice Patterns for Thickened Liquids. Perspectives in Swallowing and Swallowing Disorders. 15 (1) 14-18.
I was really excited to see Gelmix at the ASHA Convention this year. I've heard a lot about Gelmix, but have never had the opportunity to try it until now!
What is Gelmix?
Gelmix is a "healthy thickener" as it is USDA Organic. Gelmix was formulated to thick breast milk, formula and other liquids. Gelmix is also free from common allergens including: gluten, corn, lactose, casein and soy.
Gelmix is made from Carob Bean Gum. Carob Bean Gum is widely used for its gelling and thickening properties. The other two ingredients in Gelmix are Organic Tapioca Maltodextrin and Calcium Carbonate.
Gelmix is activated in warm liquids, so you must warm the liquid prior to thickening it with Gelmix.
Gelmix can be used for term infants and children under 3 to thicken to a "light honey-thick consistency." For children over 3 and adults, Gelmix can be used to thicken liquids to a "spoon-thick consistency."
Gelmix is contraindicated for infants under a gestational age of 42 weeks or under 6 pounds. It also cannot be used with infants with suspected allergy to galactomannans.
Gelmix is available in an 8.8 oz jar (250 grams) which will thicken up to 624 fluid ounces for $29.99 or you can buy the "stick pack" which contain 5 stick, individual serving packets for $5.99. Each stick will thicken 4 oz of liquid to nectar consistency.
The instructions for thickening with Gelmix:
Warm desired amount of liquid (between 100-120 degrees F for best results).
Sprinkle in Gelmix per usage instructions.
Mix well until Gelmix is completely dissolved.
Wait 5 minutes for the mixture to thicken and cool to a safe feeding temperature, mix again before serving.
Infants and Children under 3:
Half Nectar: Add 1 scoop for every 3-4 ounces of liquid.
Nectar-Thick: Add 1 scoop for every 2 ounces of liquid.
(For infants and children under 3 years old, do not use more than one scoop Gelmix per 2 ounces of liquid. To avoid gassiness, start with lowest concentration, particularly for infants 6-12 pounds.)
Adults and Children over 3:
Nectar-Thick: Add 2 scoops per 4 ounces of liquid.
Honey-Thick: Add 3-4 scoops per 4 ounces of liquid.
Spoon-Thick: Add 4-5 scoops per 4 ounces of liquid.
Gelmix may gradually thicken over time.
Time for a Trial
Last night, I thought what a great time to try Gelmix and combine it with the #thickenedliquidchallenge. I heated up my water and some milk. I mixed the Gelmix in, per recommendations for honey thickened liquid.
I used a whisk to mix the thickener because when using a spoon, the water was extremely clumpy. The milk actually became more of a pudding thick liquid.
The water was a little discolored, as with almost all thickened water. The Gelmix really didn't add a flavor to the water.
The milk was not discolored at all and had no added flavor.
The texture was another thing. I am just not a honey-thickened liquid person.
The Gelmix seems to be a good option for a more organic thickener, if you have access to heating your liquids. It seems to be a great option for babies and would love to hear your thoughts on using Gelmix with babies!