Old 04-14-2018, 06:39 PM #1 (permalink)
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Default Suggestions/Comments - Dental Care

I'm preparing a sheet to distribute to dentists. It needs to be one page max. I thought about using bullets but it would make the document too long, I think.

I need some volunteers to help me add important things and keep it simple. My dentist is very receptive to "training" for her staff.

I'm attaching the first rough draft of the document. Please use this thread to comment, make suggestions, add information, etc.

Thanks.
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File Type: pdf Dental Care for a Person with ALS.pdf (69.6 KB, 79 views)
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Old 04-14-2018, 10:52 PM #2 (permalink)
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Default Re: Suggestions/Comments - Dental Care

welp, looks good to me!
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Old 04-15-2018, 11:40 AM #3 (permalink)
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Default Re: Suggestions/Comments - Dental Care

Once I get comments and get it finalized, I'll start on one for massage therapists. Early on I was hurt by a massage therapist. I always could take very deep tissue massage and I was always very muscular and thin. After I was diagnosed my body started changing and I told the massage therapist to go easy on my back. That was the start of my back issues.

I've come to realize that all massage, for me, must be done with my on my back. No matter how much they adjust the face cradle, I still get neck and back pain. When I'm on my back, they can reach under me and do a decent job without my having to turn on my stomach.
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Old 04-15-2018, 06:37 PM #4 (permalink)
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Default Re: Suggestions/Comments - Dental Care

Kim, the first grafs are all passive voice, and also assume prior knowledge--big words and then you say PALS but never explain it.

At the end you encourage brushing and flossing. In my limited experience, that was sometimes dangerous, sending stuff flying into the windpipe. Instead, I adopted a mechanic's attitude: a paralyzed person's mouth is a hole where crap gets stuck, and the stuff needs to be picked out carefully. Pieces of pills can burn holes in the mouth. Even room dust gets in there. Once the hole is clear of debris, I swab it with something fun, like Coca-cola, to add some moisture.

I'm certainly no expert, but there it is.
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Old 04-15-2018, 07:44 PM #5 (permalink)
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Default Re: Suggestions/Comments - Dental Care

Thanks for the feedback, Mike. The only place PALS is explained is in the title of the document. I'll definitely change it.

I think I might need to put more emphasis on the changes in care as a PALS progresses. I can still brush and floss with no problem BUT when that water started dripping down my throat and I was in a full recline (it almost felt like a zero gravity position) I started to panic.

Just this week I "spoke" with two PALS whose teeth are falling out because they haven't gone to the dentist since their diagnosis. One because she thought she'd be dead by now and the other for financial reasons. Both broke my heart.
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Old 04-15-2018, 08:32 PM #6 (permalink)
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Default Re: Suggestions/Comments - Dental Care

We used the individual handheld flossers, but certainly not every day on every tooth.

And mini-toothbrushes.

I would explain that some PALS will have a tremendous gag reflex, some the need to bite down (for the latter, a bite block may be helpful if tolerated). And that generally, sessions will need to be shorter.

It should probably be clear that since ALS is a life-limiting disease, PALS will based on dental history, preferences and logistics make different tradeoffs around dental hygiene/treatment vs. other issues. The dentist ideally supports the PALS' choices, providing information to illuminate the options (pun intended).
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Old 04-16-2018, 03:48 AM #7 (permalink)
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Default Re: Suggestions/Comments - Dental Care

Kim I'd love to help out - maybe keep piling in what is being suggested then I could have a go at editing it down to readable if that will help you?
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Old 04-16-2018, 09:03 PM #8 (permalink)
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Default Re: Suggestions/Comments - Dental Care

Kim, see this
(Link Sent via pm- sorry!)

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Old 04-17-2018, 09:48 AM #9 (permalink)
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Default Re: Suggestions/Comments - Dental Care

Kim, my Dentist and my Hygienist both have no problem in my visits every three months. I have had fillings done and cleaning, with no problem, even though I have an extreme gag reflex. No saliva or water bothers me, they use what I think they call an oral dam. I still hate going there but they have it all under control, it is me who doesn't. I can not speak but they can still handle my visits. My biggest problem is getting from my wheelchair to the dentist chair but that is handled with no injuries.
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Old 04-17-2018, 10:12 AM #10 (permalink)
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Default Re: Suggestions/Comments - Dental Care

Laurie,
I've always had hand held flossers in my purse for travel. Thanks for the reminder. My dentist did suggest a block because I have TMJ and that's another good suggestion.
I think the main issue, as always, is dentists need to listen to PALS and CALS when it comes to what they can and cannot tolerate.
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Old 04-19-2018, 04:38 PM #11 (permalink)
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Default Re: Suggestions/Comments - Dental Care

You should not however push those of us who think dental care is not worth the trouble. If you never put anything in your mouth, the bacterial load is smaller than at healthy people.
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Old 04-19-2018, 04:52 PM #12 (permalink)
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Default Re: Suggestions/Comments - Dental Care

The handout is for PALS to take to their dentists. Each of us must decide what is important and what is not. I have a cracked crown and don't want it to come out when I can no longer go to the dentist.

However, since you brought it up: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3187104/
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Old 04-19-2018, 05:11 PM #13 (permalink)
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Default Re: Suggestions/Comments - Dental Care

I just went to the dentist this week. I asked not to be reclined too much, and they were ok with that. My biggest problem was spasms of the mouth and jaw muscles from holding my mouth open during the cleaning and exam. Iím assuming thereís some device that can gently (?) prop my mouth open when things are further along in the future.
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Old 04-19-2018, 07:27 PM #14 (permalink)
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Default Re: Suggestions/Comments - Dental Care

They offered a block that would hold my mouth open but I had a dislocated TMJ from a car accident and it hurts to keep my mouth open. They just let me signal when I need to close. I have to close about every 60 seconds or my jaw might lock open or, at least, hurt for awhile.

The next tooth will be easier because it is in front. I asked them to just pull the back one but they said the root was so deep an oral surgeon would have to do it.
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