swallowing problem

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Moebius Syndrome Awareness Day – please like and share to show your support and read our post to find out more.


Moebius Syndrome Awareness Day

Moebius Syndrome Awareness Day

Tomorrow (24th January) is Moebius Syndrome Awareness Day

So what is Moebius Syndrome?

Well according to The Many Faces of Moebius “Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius Syndrome are born with complete facial paralysis and can’t close their eyes or show facial expressions. Limb and chest wall abnormalities often occur with the syndrome. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present.



People with Moebius Syndrome are of normal intelligence, although their lack of facial expression is often taken to be due to dullness or unfriendliness.

It is estimated that there are only between 5,000 to 10,000 cases of Moebius syndrome worldwide.

Last year’s Moebius Syndrome Awareness Day was a resounding success and saw participation from every continent on the planet – the main focus was to create awareness via the media, and dozens of news stories hit the headlines, wound up on the airwaves, and blasted off into cyberspace via various print, TV, radio and social media news publications!

Family, and the importance thereof in the lives of individuals who have Moebius syndrome is the focus of this year’s Awareness Day. “It is a tribute to the many families around the world who are often the unsung heroes of our lives” says Tim Smith, President of the Many Faces Of Moebius Syndrome, who himself has the condition.

“There is no substitute for a loving, supportive family whether that family is biological, or our worldwide Moebius Family. Knowing someone is there to support and fight for you when the going gets tough makes living with Moebius Syndrome a little easier” says Vicki McCarrell, President of the Moebius Syndrome Foundation.

Moebius Syndrome Awareness Day is held annually on the 24th of January, the birthdate of Professor Paul Julius Moebius, the doctor who first diagnosed the disorder in 1888.”

5 Comments Posted on Diet, Multiple Sclerosis

Difficulty swallowing? Find out how other people cope with Oropharyngeal dysphagia!

Difficulty swallowing Oropharyngeal dysphagia

Difficulty swallowing Oropharyngeal dysphagia

Swallowing disorders (or more properly called Oropharyngeal dysphagia) can occur at any stage of somebodies life. It can occur for a whole range of reasons and can even be hereditary! Oropharyngeal dysphagia is often associated with conditions like multiple sclerosis (MS), Parkinson’s disease, stokes, brain tumours, amyotrophic lateral sclerosis, Bell’s palsy, and myasthenia gravis.

In this post we are looking at the underlying causes of your swallowing problems, how they were treated and with what success.   It would be great if you could use the comments box below to share your Oropharyngeal dysphagia experience.

Current treatments include surgery, Palatal lift prosthesis, electrical stimulation as well as more general physiotherapy, using a bolus or just a change in diet.

So with that in mind we would like to think about some of the following questions about your swallowing difficulties:-

What was the cause swallowing problem?  Was it a medical issue?

What was the effect of swallowing difficulties on your lifestyle?   In particular how has it impacted your eating habits and diet?

What treatments for Oropharyngeal dysphagia did you receive and dis they actually work?

If you had to give one piece of advice for somebody who has just started to show signs of a swallowing disorder what would it be?

Thanks very much in advance.  It would be great if you could share this with other people who might be interested in sharing their experiences.

 

suzyqw I am seeing a speech pathologist. She has me doing all kinds of mouth & tongue exercises. She also taught me to turn my head to the side & point my chin down to make swallowing easier. That is what has helped me more than anything. I realize that it is common for us as ms patients. I don’t want more drugs to so call fix the problems. My food seems to get stuck in the middle of my throat. It’s random but I can tell when I start eating something if it will happen or not. I have also noticed it seems to intensify with hot foods. See a speech pathologist. They can help with swallowing.
fedupandconfused the most difficult thing is that just when you think you’ve finished with noticing things something else crops up and because its random you don’t know if it’s worth mentioning or even if it’s related and besides you don’t want to sound neurotic. I’ve not been diagnosed as yet but swallowing has been one of those things that seemed odd to keep happening. Initially i thought it was random but over the last year it’s progressed. The first time was when I ate a chunk of tuna and it got stuck I literally lost my breath and thought I would die. I was able to take a gulp of water down inbetween bringing bits back up. At the time I put it down to tuna being fairly dry. Then over time with various different foods on occasion I have managed to swallow but it felt like I’d got it stuck in my lungs and i haven’t been able to cough it up. And recently I’ve noticed I need to let my food completely cool down before I eat it which is strange as I’ve always eaten my food really hot. And now I have to let it cool down, eat a little bit, leave it then go back again when the last lot has gone down. I have also recently noticed when I swallow it seems to stick like a ball in my stomach or inbetween the osophegus and into the stomach. I find myself standing up to get it to “slide down” and once that ball/knot has gone I can start the whole eating process again. It could be coincidence and I never realised it’s another possible symptom til I saw this site.
[…] Since the dawn of humanity, one thing that motivates us on the basest level is eating. Early humans had to learn to hunt to put food in their mouths and stomachs. Modern men go through life, doing their jobs to earn the means to be able to put food on their plate. When it comes to the basic means of survival, being able to eat the food that we need in order to live is one of the very first ones that need to be met. And because this is a basic need, eating of course comes naturally to us. We eat everyday of our lives, from the very first moment we were born. Eating then involves digesting. The first process of digestion starts at the mouth, where food is ground and chew so it can be swallowed. Eating and even swallowing itself seems like such an inconsequential act, made so normally and so innocuously by every human being on earth. So what happens when a person has difficulty swallowing? […]
BonnieLass1 mj1daisy I wish I had a clue. Everyone’s MS is so different. I randomly just forget how to swallow. It’s strange that something that should be so natural suddenly becomes something you have to actually think about doing. I would say that your doctor or a second opinion would be the way to go. Some things are hard to explain when it comes to MS and weird symptoms like not being able to swallow. It is scary though and I always end up choking and throwing up because I can’t catch my breath when it happens. I wish you the best of luck.
mj1daisy I have difficulty with swallowing. It’s kind of sporadic with both solids and liquids. I had a barium swallow done and because I thought I just had acid reflux but it turned out to be “nonspecific motor in coordination of the esophagus” that was before I was diagnosed with MS so they went even ruling an MS symptom out. I wonder what they would say now???
It feels like a rock or somethings hard gets stuck and I have to stop swallowing for 30 seconds or more for it to stop hurting. Could it be esophageal spasms??
BonnieLass1 I have trouble swallowing but I have not received any treatment for it. Mine is MS relapse related and seems to happen randomly. I noticed that it was more when I was fatigued. I don’t have to be eating..I just forget to how to swallow. I panic normally then choke and throw up from it. Tears running down my face and gasping for air. Its something that I can’t seem to predict and normally when I am fatigued it happens more often. The higher dose of solumedrol that I am on the less it happens. Its something that I need to discuss in my next visit I am sure.