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    • #11172
      Dagmar
      Keymaster

      How often do you go to the dentist? Before my diagnosis, I went to the dentist for cleaning and check-ups twice a year. With ALS, I worried that not being able to lean back in the chair (breathing and speaking issues), not being able tolerate water in my mouth (swallowing issues) plus, pushing a walker and wearing AFOs would just be too much! I avoided the dentist for the first two years, until a crown came loose and forced me to seek help.

      I wrote about my experiences here: Surviving the Dentist with the New Normal of ALS

      Turns out, dentists are able to accommodate all kinds of needs.

      What have been your experiences when seeing a dentist? How do you take care of your teeth now? What tips can you share?

       

    • #11195
      Kim Belden
      Participant

      Hi,
      I also wrote a handout for my dentist.

      I had to have two crowns replaced this past year. The first one was pretty hard. The one I had done last week was in front so it was easier. The dentist is also an MD and understood the challenges of ALS.

      I have a few other problems (neck and Meniere’s disease) where leaning back is not good.

      She let me tell her my comfort zone and told me when I needed a rest to hold up my finger. She was very gentle and I did well.

      I’ve always only had one cleaning a year because I don’t build up plaque and brush and floss at least twice a day. Now I’ve stepped it up to two cleanings a year for as long as I feel comfortable.

      I would advise PALS to get dental work such as crowns/fillings, etc. early on.

      My dentist can move her chair and have room for a PWC, if necessary. I’m still walking…..not much but I have pretty good balance so I can navigate in and out of chairs easily. I’m not sure what I will do when a daytime Trilogy and PWC is in the picture but I’m sure glad I got both crowns done. They said everything else looks very good so that made me happy.

    • #11198
      Dagmar
      Keymaster

      I agree Kim, we need to take care of our teeth now while we’re still able to get into the dentist’s chair. It sure motivates me to be extra diligent with my daily brushing and flossing!

      I wonder if anyone has had a dental experience while in a wheelchair or maybe a home visit?

    • #11400
      Susan Bowman
      Participant

      So glad to see a topic regarding going to the dentist.  It’s now one of my greatest fears.  A month prior to my diagnosis I had a molar removed.  I was planning on having an implant done as soon as I healed.  However, that next month I received the ALS diagnosis and was in such shock and fear that I felt spending the thousands of dollars on an implant, when I didn’t know what the future held, didn’t make any sense.  I felt I had much bigger things to worry about than my teeth.

      Now, 20 months later, I’m still mobile, but going to the dentist for routine cleanings and fillings has become very challenging due to breathing, swallowing, and saliva issues.  I’m so sorry I didn’t proceed with the planned implant, as having an open space in my mouth allowed my front bottom teeth to shift into an unsightly mess.  I even questioned my respiratory therapist about the possibility of the nightly bipap mask causing the shifting teeth.  (He said he’d never heard of that happening.)  I would consider braces, but again the unknown future/fear factor sets in.  Plus, while my dentist and hygienist are very caring, I don’t feel they have a clue as to what ALS entails.  I would love it if there were dentists available who were specifically trained to deal with ALS patients.

      • #11402
        Dagmar
        Keymaster

        Susan, have you asked about wearing a “tooth guard” – – hard plastic, molded, fit upper and lower teeth? I wear them at night due to night grinding, but wonder if they would help keep your teeth from shifting at night.

        ALS is so different in all patients it would be hard to train dentists in just ALS (but I too would love it!) Have you asked your ALS Assoc. coordinator for suggestions as to who other patients near you use?

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