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    • #17789
      Shirley Cypher
      Participant

      My husband has PD with dysphasia.  He has silent aspiration (food, liquid being inhaled with out coughing)  This can cause aspirational pneumonia. He has been in the hospital twice with pneumonia. Pneumonia is a major cause of death of people with PD.  He is working with a speech pathologist to strengthen his throat muscles.  She indicated he should keep his mouth clean through mouthwashes twice a day etc.  One of the things I find no mention of is using xylitol which is a sugar substitute that kills bacteria in the mouth including the ones that cause aspirational pneumonia.  I find a lot of information from dentists about xylitol helping prevent tooth decay but nothing about helping prevent pneumonia.  I have started making a mouthwash of baking soda,xylitol, and water.  At present mouthwash applied with soft foam brush morning and evening,  chew xylitol  gum (several brands available ice cube by hershey seems to have the most xylitol) after lunch and snacks.  you can also make candy with it.  there are recipes on line.

    • #17790
      Toni Shapiro
      Participant

      Hi Shirley,

      Thank you so much for your post. It prompted me to research this and  I am going out today to get xylitol.  My dysphagia is very upsetting to me and difficult to live with, particularly as you stated, aspirational pneumonia is the major cause of death for people with PD. I too did not hear that xylitol was helpful for PD patients so I am excited by this.  Awhile back my dentist gave me samples of XYLIMELTS, a time released xylitol that fixes to the side of your tooth.  At the time I thought it was for dry mouth but I realize now that she gave it to me because of my PD.  She had commented that I need to see her more regularly because of PD and how mouth health is particularly important now that I have the disease.

    • #17793
      Mary Beth Skylis
      Moderator

      Wow! This is amazing. I’ve seen xylitol gum on the shelves at my grocery store, but I didn’t realize it could be used to help with dysphagia. Please keep us posted on the results!

    • #17798
      Shirley Cypher
      Participant

      The main thing the xylitol will help with is preventing the aspirational pneumonia by killing the bacteria in the mouth.  however if you are having to thicken your liquids (water) you can make your own flavored simple syrup with it or use sugarless simple syrups found in the coffee section of grocery stores such as Winco and Fred Meyers.  I have a hard time getting my husband to drink thickened water and this makes it taste much better.  Unfortunately the various medical disaplines don’t compare notes much.  i.e. dentists know that xylitol kills germs in mouth and helps prevent cavities but don’t let speech pathologists know that it could help prevent aspirational pneumonia better (in my opinion at least) than regular mouthwash because you can use it so many ways throughout the day.  It of course doesn’t do anything for curing dysphagia need the speech pathologist for that.  I’m happy to be able to help others work out ways to make dysphagia easier to deal with.  In about 2 weeks will be doing another fluid xray video to see if he is still silent aspirating with food and drink.  Because this is the 2nd goaround with pneumonia plan on continuing to use xylitol either way.

    • #17847
      SteveNaive
      Participant

      Thanks for the info on xylitol. I have a similar problem your husband has, but I have been using Listerine for the germ-killing component of the treatment. I have had good luck of with the exercises the speech pathologist gave me. Being essentially a lazy person, I did some experimentation and found that I could distill the original exercises I received from her down to three or four minutes of exercise which were enough (for my body) to stop the problem. I Also find that I need to avoid Certain sweets – caramels or really any candies that you suck on which seem to generate saliva. So that is probably the cheapest control of any PD symptom I know of.

    • #17857
      Tina
      Participant

      I found I had to give up caramel and fudge, as they were  becoming too difficult to process in my mouth. Both have always been part of my existence, and our family has its own versions we make. So I thought it ironic I’d have to give up this lifelong habit.

      I also found that I couldn’t tolerate the taste anymore, I got nauseous as soon as they hit my stomach. I still love the thought of them, until I remember how my stomach turns lol

    • #17872
      SteveNaive
      Participant

      @Tina

      After you’ve given up Sugar Babies and Milk Dues, what’s the point in going to see a movie? And popcorn gives me almost as much grief. Perhaps the most insidious offender is that innocent looking lifesaver breath mint. Oh, how many times have you pleaded with me for one more chance. then, ambushed me into what looked and sounded like corona virus on top of emphysema.

    • #17873
      Tina
      Participant

      yes Steve and it’s bad enough at home let alone being out in public when it happens

    • #17883
      Mary Beth Skylis
      Moderator

      Tina, what a bummer! Our family candy is peanut brittle but it usually only makes a big appearance around the holidays. And my sister chipped her tooth on it once.

      It’s interesting that the taste has become bothersome. Are there other foods or snacks that  you’ve grown to dislike over recent years?

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