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    • #11172
      Dagmar Munn
      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 Munn
      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 Munn
        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?

    • #20133
      Anonymous
      Inactive

      I go to the dentist every 6th months.

    • #20136
      Marianne Opilla
      Participant

      I believe dental care is a must.  My dentist is very caring and patient to be sure I am comfortable.  I started grinding with ALS.  Not sure if it is a bulbar symptom?  Also as my mouth and tongue changed I was biting my lower lip and inside of my mouth.  I didn’t realize how sharp teeth are!!  I tried over the counter mouth guards, but they didnt fit correctly.  My dentist made me one and it is so nice not to have my mouth and lips chewed up.  And he didn’t charge me because i think he feels sorry for me and wanted to help.

      I also agree that the Trilogy mask distorts natural mouth position.  Especially when tightened to prevent air leak at cheeks.  The mouth guard helps this tremendously.

      I also do a “handout” for my appointment and he appreciates it! I cannot speak.

    • #20139
      Dee Hagen
      Participant

      My husband has maintained his schedule of semi-annual dental cleanings, since his diagnosis in 2019. He plans to keep those going as long as possible. He is in a wheelchair and is able to maneuver it side-by-side with the dental chair and scoot into the dental chair. He still has use of arms and hands. He has no voice, so I go in with him to help with communication. A bit of a tight fit in the cubicle but we make it work. He brushes and flosses like crazy at home, so his checkups have been easy breezy so far. The dentist and hygienist are gentle and accommodating with him. She suctions a lot to keep it comfortable. Dental health is so important.

    • #20142
      Debra Kaufman
      Participant

      There are dental hygienists and even dentists who will come to your home. I recently did the research on that for my cousin who lives in Long Beach. There are quite a few in Los Angeles, but only two would go to Long Beach – which was all we needed.

      There are hygienists who specialize in going to nursing homes and/or working with people who cannot “go” to the dentist office. They may not have experience with ALS but have worked on many people who are paralyzed or otherwise impaired. Here’s the link to the Dental Hygienist Association which is probably a good starting point: https://www.adha.org/

      Good luck!

      • This reply was modified 3 months, 3 weeks ago by Debra Kaufman.
    • #20144
      Bill
      Participant

      I just went today for my 6 month exam and cleaning. I always remind the dental hygienist about my ALS and potential swallowing or choking issues. I’m fortunate the hygienist previously was a traveling hygienist visiting nursing homes. Extra care is taken for added suction and lower water use. Very caring towards me and even gave me a big hug after. I intend to keep the 2x per year as long as I can.

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