Dana,
I'm regret being so late in responding to your original question. I'm having computer problems at home, and have not been able to post much these last few days.
First, I'm sorry to learn of your husband's diagnosis ... to be married such a short while and to be faced with these challenges! Is your avatar photo from your wedding? I think there are a few other members though, in similar circumstances. However, I don't think with bulbar onset. Marjorie (Marjorie R. Wilcox) I think was not married a very long time before her husband was diagnosed with ALS.
It sounds like the idea your husband's pain being of dental origin would be a starting place. I do not grind my teeth, or have extreme pain in my face, jaw or teeth. I have found that muscle spasms I get in my neck (on the sides) are really pretty painful, they're different than, say, leg cramps. Sometimes there is a pressure sensation in my face, like the sides (around the mouth/jaw area) is being squeezed in a vice. But its pressure, not pain. And my cheeks will hurt like I've been laughing a lot, but, as for actual in the mouth pain. no never.
If your husband is not on a muscle relaxer, this might be a very good place to start to address the pain, if it is muscle spasm related, rather than teeth or sinuses. Many PALS take Baclofin, some take Valium or Flexerille. I believe (but do not know this for certain) that Baclofen is an anti-spasmodic as well as muscle relaxer, and the other two I mentioned only muscle relaxers. Really not sure of this being reliable information . For me, the Baclofen works the best to help with pain from spasms in my neck. Also, if he likes tonic water, the "name brands" have quinine as an ingredient, which helps with cramping. Taking something like the Baclofin, coupled with a mouth guard, hopefully will help him.
Lin, you'd asked about progression, and Dana, about how long before intervention assistance with breathing or eating...
I use a bi-pap at night, my FVC is not bad, its in the low to mid 80%s, the reports grade it at "fair," so the weakness of my soft palate, rather than respiratory muscles, is why (I think) I need it at night.
Unlike most bulbar onset PALS, speech is not as much of a problem for me as my actual voice, which is quite weak now after any use. Whereas with my speech, others tell me I sound like I've had a few drinks as the day wears on, and, drinking does exaggerate the problem to where I notice it more myself, but its still not a major issue.
Swallowing is becoming more of a problem for me, I've had aspiration pneumonia twice, but not been that sick either time, more like a walking pneumonia. Having modified barium swallows are the best way to track progression of swallowing weakness. There is a LOT of information to be gained from one of these tests.
... my neurologist always notes the jaw jerk, but its not something I notice really, for a while, before I knew what was wrong with me, I was biting the insides of my mouth with regularity, it does not seem like it happens that much anymore.
My gag reflex is completely absent, but, from how it has been explained to me, it is only part of several defenses ~ 5(?) others ~ the body has to protect the lungs.
I did not notice any weakness of my limbs until last summer, subjectively, I can't really say what part of me is progressing faster, there is some weakness in both legs and both arms, some loss of dexterity with using my fingers, but I can still feed myself, crochet for short periods of time, (write as illegibly as I ever did LOL) drive a car, but not for long distances.
There really is no way you can know what the progression will be. It really does help to learn how others have experienced it, but there isn't a "norm" . Having this forum to come to has been such an asset to me, as it has kept me from feeling isolated. Even though I may have an uncommon presentation of an uncommon onset of an uncommon/rare disease, I've never felt alone dealing with it, and its because of being able to come here.
Hope this helps to answer your questions, and I will be around more after my computer problems get resolved.