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    • #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.

       

    • #17643
      Denis
      Participant

      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.

      • #17923

        How did pneumonia affect your eating habits? I had pneumonia as a child, about the age of 13.

    • #17646
      Pete Barron
      Participant

      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!

    • #17889
      Deb Robins
      Participant

      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

      • #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!

    • #18001
      Robin
      Participant

      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.

      • #18008
        Rick Bethem
        Participant

        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.

        https://ufhealth.org/neil-n-chheda

        • #18015
          Leah Leilani
          Keymaster

          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.

        • #18022
          Robin
          Participant

          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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