Dental Care

[Manhattanite]

My PALS has exceeded his life expectancy, for which I am grateful. He is on hospice care at home.

He has not had oral care in about a year and I am concerned about tartar buildup and also the fact that occasionally he grinds his teeth after yawning. He has bulbar onset. He is unable to hold his head up, control his tongue, open his mouth for a long time or swallow.

I asked his neurologist for advice but his response was that my PALS would not live to see the end of this year so that oral care was not a priority.

I was curious if CALS were able to find a dentist who would treat their PALS or any suggestions of what to do based on your experience. Is this something I should focus on or just ignore it?

 

[Jrzygrl]

I took my PALS to our regular dentist. I explained the situation ahead of time, and that he would have to be seen/treated in his power chair. They were very accommodating. He does not, however, have problems controlling his head/tongue/mouth. I would talk to your dentist and see if they are set up for it. The last thing you need is an infection in his mouth!

 

[lgelb]

You are near many major medical centers. If calling around locally doesn't work, and some private dentists are indeed very accommodating, look for a university with a dental school, and they will often have a "special" or "advanced" care dental clinic for people with disabilities.

 

[GilWest]

Mom's dentist came to the house and repaired her implant that broke off when she was incubated at the hospital. If you have a good relationship with your dentist, it couldn't hurt to ask...

 

[affected]

I would really want a dentist who could guarantee there won't be an aspiration as your PALS has all the complex bulbar issues.

I used to do all Chris's oral hygiene and I know what all those things you describe are like. If there are dentists who specialise in working with people who cannot swallow it would certainly be worth looking into.

 

[patoyeah]

dental care can difficult w/ pals. I have communicated with pals that have not had their teeth brushed for multiple years

my wife uses bite blocks to keep my mouth open to brush my teeth, and the suction to clean it out

its cumbersome and a bit stressful, but we do it when we have time, which is not often - Pat

 

[chally]

I just went to the dentist last week and just before we headed out it dawned on me " is this a waste of time" should I be using my time for enjoyable events.
Well we pushed through and went there and I told my dentist this and he said no not a waste of time to keep on with daily hygiene . That he would take care of me as if I was still an 18 yr old in good health and not to give up anything until I really have to.
I like my dentist and the attitude he has. I never have to get out of my pwc.
Good luck
Chally

 

[Firefighter58]

I to was at the dentist last week, I go every four months for a check up and cleaning. They know me and handle me well, Four months ago I had two fillings replaced and due to the fact of an extreme gage reflex he used what he called a wet dam and it worked very well. I can not speak but that doesn't matter, they know there jobs so I don't have to tell them how to do it.
Al

 

[Atsugi]

I highly recommend CALS look into their PALS mouth reqularly, once ALS affects the jaw, lips or tongue. Normally, our bodies keep the mouth wet and swept clean. However, if the mouth is affected, trash can accumulate. Old pieces of pills sit under the tongue, burning the flesh. Old food, even dust or hair that was floating in the air can get stuck in the mouth.

I never "brushed" my PALS teeth. I used a q-tip to pick that stuff out of the mouth.

Warning: Most toothpastes make a foamy lather that can irritate the mouth and throat if it is not rinsed out soon.

 

[BetsyB]

My caregiver brushes my teeth wit baking soda.good.

 

[adrivtham]

I brush my husband's teeth twice a day with Tom's tooth paste and I use mouth wash zero alcohol .But I am suctioning while doing this . It is challenging because he has troubles opening his mouth. And of course I do this very fast but I don't want him to have another problem.

 

[Manhattanite]

Thank you everyone for your useful replies! Right now I am considering the following three options:

1) Contact his old dentist to see if he would feel comfortable seeing my PALS given the chance of aspiration.

2) Take him to the NYU dental school - they seem to have a special practice dedicated to patients with disabilities.

3) I found a traveling dentist who serves the tri-state area who claims he has treated PALS at home.

I am leaning towards option #3 because it will be most comfortable for my PALS to be at home from what could be an exhausting experience!

 

[Dave K]

If a dentist says they have treated other PALS and is willing to come to your home, that sounds like it could be a winner.

Daily oral hygiene is as important for PALS as it is for everyone else. Having a suction machine is very helpful. If you don't already have one, maybe the dentist can write a prescription for one that your hospice should have no difficulty filling. You can also buy them on the Internet.

One thing we found helpful was using children's toothbrushes instead of adult sizes. We also flossed twice daily.

Good luck!

 

[affected]

I reckon I would try the one who comes to your home first - just check with him that when he says he has treated PALS, has he treated bulbar PALS - big difference to treating someone in a wheelchair, compared to someone with the complex bulbar issues.