Guest post: MSers with dysphagia

Are  you have swallowing difficulties due to MS? Are your carers prepared for it? #ClinicSpeak #MSBlog #MSResearch

“I was contacted by a carer who wanted to tell her story about her mother’s near death experience from choking as a result of MS-related dysphagia. It was very moving; here is her story.”

“A new innovation with the potential to saves lives and provides hope for MSers with dysphagia” by Jane Mascola. 

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 doughnut, 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 is been made.

Jane Mascola Biography

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.

coI We are not endorsing and have nothing whatsover to do with this product being produced

6 thoughts on “Guest post: MSers with dysphagia”

  1. This is my worst nightmare scenario. I just hope and pray I never have this problem because the thought terrifies me.

  2. Great article Jane, thanks for bringing this device to our attention. I will pass along the word!

  3. COI We do not get any support for this blog and is not an endorsement.Remember we do not live in US movies and so not all Brits are baddies and importantly you do not lauch straight in to the heimlich when someone is choking. You can rupture the spleen and cause internal bleeding during this process. First see if you can flick the obstruction away then some very hard slaps to the back before you become mel gibson or whoeverCheck out the latest first aid for best advice

  4. Jane, that was very well written and informative. Thank you for calling attention to this very under-reported condition that affects so many of us and our families. When will this product be available?

  5. I have RRMS and have problems swollowing tablets. The large vit D and calcium tablets I started to cut in half. Today the sharp edge of the half tablet is stuck in my throat, its painful. I had some pain last week and had a paracetamol. The tablet was stuck in my throat I could feel it. I went to bed like it. Then it the morning it had gone/disolved. I am due to go on BG12 end of Oct and am a bit concerned how will I take the tablet twice a day?

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