A New Innovation to Save Lives and Provide Hope for MSers with Dysphagia

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Both my mother and father live with MS in Sarasota, FL.  My mother lives with primary progressive MS and my father was initially diagnosed with relapsing-remitting MS which has now progressed to secondary progressive MS .  Despite the variances in their disease-related impairment and progression, they both share difficulties with swallowing, even early on post-diagnosis.  My mom has experienced several episodes of choking and several months ago choked on a donut, turned blue, and fell unconscious.  Despite many efforts, the several caregivers present at the time could not effectively perform the Heimlich maneuver.  It took a large 6’4 gentleman from EMS to perform the Heimlich six times before the food was slowly dislodged.  She was approximately 30 seconds away from dying.  Luckily, she is doing well now, however based on her history of swallowing and choking issues coupled with the natural pulmonary decline in some MS patients, I am constantly faced with the anxiety that she will choke again, and regardless of how well the Heimlich is performed, will not survive.  I share this story with you because I know that at various stages of MS, including early on in the course of the disease, dysphagia (difficulty swallowing), pulmonary dysfunction and muscle weakness arise.  When these impairments occur early on most are unaware that there is a problem.

Dysphagia may cause the individual to cough after drinking liquids, or choke when eating certain foods, especially those with a crumbly texture.  There is an imaging procedure called a modified barium swallow (videofluoroscopy) that is used to evaluate a person’s ability to swallow liquids of various thickness and solids.  Speech therapists perform a thorough evaluation, diagnosis and treatment of dysphagia with strategies and techniques designed to achieve better eating and swallowing. There are three main swallowing strategies they try to implement: 1) Postural Changes  2) Swallow Maneuvers and 3) Behavioral Strategies.  The speech therapist may adjust posture while eating through activities such as with chin tuck, head turn to weak side, head tilt to stronger side, head back, and chin tuck with head turn.  They will also incorporate swallowing maneuvers such as the Mendelsohn Maneuver, Effortful Swallow, Supraglottic Swallow, and Super Supraglottic Swallow.  There are also behavioral strategies that allow the individual to incorporate certain techniques while eating particular foods.  These behaviors include Liquid Wash which alternates bites of solids with sips of liquids.  The Larger Bolus Strategy is used to enhance the sensory input in order to reduce the delay triggering the pharyngeal swallow.  For those with significant residue of food in mouth after trying to swallow, the Swallow/Bolus has the individual swallow 2-3 times with each bite/sip.  These types of compensatory management techniques are helpful, yet obviously they do not slow or prevent the progression or course of the swallowing incompetency.

Whether you live with MS or are a caregiver for someone living with it you can empathize with the array of swallowing challenges and the subsequent psychological toll that it creates for all.  Unfortunately, if the swallowing challenges turn into a choking episode there is a chance the individual may aspirate, or inhale fluid or solids into the upper respiratory tract, resulting in aspiration pneumonia.  This condition can be serious, requiring treatment with antibiotics, or could even be fatal.  Choking on food without aspirating can be just as deadly whether the Heimlich is performed correctly or not.  Think back to my mother’s recent choking episode. The natural question is….Why so many unsuccessful Heimlich attempts and why did the food barely dislodge?  Pulmonary compromise may be one of the main culprits.  MSers rarely complain of pulmonary dysfunction, however upon pulmonary testing, dysfunction is commonly found during the mild phase of the disease.  Muscle weakness in the diaphragm, changes in muscle tone, motor incoordination, and postural abnormalities all contribute to the reduced pulmonary function and essentially contributing to an ineffective Heimlich.  If the Heimlich is unsuccessful the outcome is grim.

These ultimate, final outcomes and the potential for an unsuccessful Heimlich due to muscle weakness and pulmonary decline are exactly why I am so excited to learn about an apparatus that is specifically designed to save someone from choking.  It’s called LifeVac.

The inventor/founder, Arthur Lih, created this product after hearing a story about the death of an 8 year-old boy after he had choked on a grape.  He has professed, “How in this world of tremendous widespread innovation and achievement are we not able to save a child from dying on a grape!”   It has become his mission to save as many lives, from this senseless type of death, as possible.

The LifeVac is a non-powered single patient portable suction apparatus developed for resuscitating a choking victim when standard ACLS protocol has been followed without success.  The negative pressure generated by the force of the suction is 3 times greater than the highest recorded choke pressure.  The duration of suction is minimal so LifeVac is safe and effective.  It will be available to the public in the coming weeks and there is a waiting list on the website to register to receive it upon its release.

My anxiety level, along with that of my parents’ caregivers, about my parents’ risk of choking has been drastically reduced just since finding out about this apparatus.  I can’t begin to express how critically important LifeVac will be not just for the MS population globally but for the relief of the psychological toll their dysphagia has on their family and caregivers.  There is now hope.

 

Jane MascolaJane Mascola Bio

Jane Mascola is a graduate of Southern Methodist University (Dallas, TX) with a full-merit psychology Ph.D. scholarship to Tulane University (New Orleans, LA).  She is currently employed as a pharmaceutical healthcare professional in Southwest Florida and resides in Venice, FL.  She has a keen passion for learning as much as possible about MS and the subsequent impact the disease has on their families and caregivers.  Both her mother and father live with MS in Florida and were under her direct care for approximately four years.  She has a particular interest in helping other MSers and caregivers cope with MS-related swallowing and choking issues.  Jane is married with a 2 year-old daughter.

5 thoughts on “A New Innovation to Save Lives and Provide Hope for MSers with Dysphagia

  1. James Kalyvas says:

    As a neurosurgeon who deals daily with patients suffering from neuromuscular disorders affecting their upper respiratory tract and their ability to swallow, I am acutely aware of the choking risks these patients face, as well as the psychosocial stress it puts on them and their caregivers. It is true that there are few intervention options for a choking patient after the Heimlich maneuver has failed, especially outside the hospital setting, which may be a bit surprising given how far technology has come in other treatment areas. Though I have not tried LifeVac yet, it does seem to make good physiological sense, especially if it can generate supraphysiological expulsion pressure at the oropharynx to compensate for the weak musculature in these patients. Overall, I think this is a refreshingly simple idea that holds promise.

  2. Jo-Ann Gardner, ARNP says:

    As a nurse practitioner I find this information and product to be of extraordinary benefit to not only my patients but their families as well. Such an inspiring story!!

  3. Omar Y. Cooper says:

    This has to be the most touching and amazing story that I have ever read! I am truly inspired by the author’s selfless attitude to share her family’s experiences and challenges with the rest of the MS community to offer a way that can bring ease to their loved ones. This article truly is saving and will save lives! LifeVac should be eternally thankful that Jane’s passion, spirit, and servant mindset was presented to them. I would further urge LifeVac to partner closely with Jane as her closeness to the matters expressed in the article will undoubtedly do so much more in getting the word out about all of the benfits that LifeVac can offer so very many MS patients, their families, friends, and loved ones for years and years to come! This article has even made me take a look at myself and how I share information that could assist or even save a life and definitely encouraged/inspired me to do more. I wish many blessings to Jane and her family and the thousands of lives that may be changed for the better from reading about her experiences and how LifeVac changed her situation. To the author: please let your heart keep bleeeding for the MS community and it’s many struggles. Because it takes a devoted, driven, and committed individual like yourself to help unlock so many answers and even ultimately find a cure. Don’t ever stop and best wishes to you!

  4. Sheeba mesghali says:

    Jane ,
    That was such a beautiful and well written story with very informative literature. You are a great writer and amazing and caring person who will be and already is a huge asset to this world. You have a huge kind loving heart and i see you doing bigger things in your future for others !!! You have a great passion for learning and helping to find improvements in ways to make peoples’s lives the best they can be. You should have been a doctor for the Chronically ill as you have such a care taking capacity!! Super proud of your efforts and hope this takes you even further into finding a cure or even just comfort measures for the chronic illnesses that exist!!!!
    Sheeba Mesghali

  5. Lauren Mazer says:

    I am so moved by your tireless commitment to help not only your own parents with their health struggles but also the global MS community at large. You are truly an inspiration, Jane. If only there were more people like you in the medical field!

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