Tagged: accommodations, ADA, adaptions, chew, disability, eating and MD, eating habits, food and MD, living with MD, muscular dystrophy, nutrition, rare diseases, swallow, tips and advice
- This topic has 9 replies, 6 voices, and was last updated 6 months, 1 week ago by
Danielle “Dani” Liptak.
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February 12, 2019 at 5:30 am #11315
Have you experienced difficultly chewing or swallowing due to muscular dystrophy?
What are some personal experiences and useful hints to maintain healthy eating habits when chewing and swallowing ? Do you adapt your food, such as mince, puree, mash?
Example: Adding some kind of sauce to food to make it easier to swallow. I have used applesauce when I needed to swallow large pills.
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December 9, 2021 at 8:31 am #17643
After a dose of pneumonia I had to adjust my eating habits and the advice I got was eat alone, no talking ,eat small amounts and take a sip of water and swallow slowly also the use of a liquidizer was recommended for better swallowing.
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March 23, 2022 at 12:08 pm #17923
How did pneumonia affect your eating habits? I had pneumonia as a child, about the age of 13.
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December 10, 2021 at 4:51 pm #17646
Like many others with MD I have trouble swallowing. Fortunately I like hot salsa and digest it well. I smother most anything with tomato sauce or salsa and it goes down fine. My wife complains that everything must taste the same, but I like the taste!
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March 14, 2022 at 10:56 pm #17889
These strategies all resonate with strategies my son used throughout his 20’s living with Duchenne MD. He quite wisely has a PEG now at 34yrs, not to stop eating but to put his body under less pressure to obtain nutrients, risk aspiration and keep bowels regular. He still eats small amounts for some meals or to taste food for enjoyment.
Videofluroscopy testing does help personalize treatment, for instance, on analysis it was found that puree was actually worse for Doug and he did better with small pieces washed down with fluids. worked better for a time.
There is not a lot of understanding about the major cause of spillage of food particles from the throat pockets and the high risk of penetration even in adolescence, so I put together this tip sheet some years ago from expert advice.
https://create.piktochart.com/output/8023004-dmd-swallowing-food
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March 15, 2022 at 4:50 pm #17900
Thank you for sharing and providing a tip sheet, it can be so helpful for people going through the same thing! If anyone has anything to add please share your thoughts!
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May 5, 2022 at 6:56 am #18001
I’ve had swallowing issues as well. I’m working with a speech therapist. It’s really hard for my husband watching me eat. He worries about the choking, regurgitation, and the rare occasion I bring everything back up because it just won’t go down.
To be honest, I’m not looking forward to the anticipated progression.
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May 11, 2022 at 9:00 am #18008
Hi Robin. I have had very similar issues for about 5 years. Going to several different ENT’s and speech therapists never helped at all. I found my solution after visiting a MD conference in Miami a few years ago and the neurologist suggested I visit Dr Chheda, MD at the Univ of Florida, Gainesville. He took one look at my throat through a camera and immediately knew the problem. The sphincter in the throat was almost completely closed off. Solution: botox injections in the sphincter! The first lasted a year and the second has lasted about a year and a half so far. Amazing. I can eat anything now with no problems of choking, regurgitation or any of the previous problems. I HIGHLY suggest you investigate this solution on your own. Mine was a life changer. I sympathize with you as I never thought I’d be able to go out to dinner with my wife again. Always had to excuse myself after the first bite. Good luck to you. There’s help available. You’ll probably need to find help at a University as your neighborhood ENT’s don’t seem to want to bother. Maybe Dr Chheda can’t refer you to someone in your area.
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May 17, 2022 at 3:46 pm #18015
Rick, I’ve never heard of using Botox to treat the sphincter but that’s absolutely genius! What an amazing suggestion by that neurologist. I love doctors that truly are problem solvers. You must be so happy to have that problem solved and be able to have that quality of life back.
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May 23, 2022 at 7:46 am #18022
Rick, I’ve heard of that. I have my first appt with the local MD clinic in September. Will discuss that then
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August 31, 2022 at 1:22 pm #18140
Hi, Robin!
I hope your appointment goes well this month for you!
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September 2, 2022 at 2:24 pm #18148
Hi, I have opmd. I had a throat dilation which worked great for about 6 months. I’m planning on getting another one soon.
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September 13, 2022 at 10:06 am #18171
I had my throat dilated, and it helped tremendously with acid reflux! I wonder if it’s something insurance will cover for MD patients?
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