Does anyone else have this problem?

[Miss]

My husband keeps getting food stuck on the roof of his mouth. Anyone else have this problem, and do you know how to stop it?

 

[Phil's wife]

Phil used to have breads stick up there. He just had to avoid those types of food. When he got to that point, chick fil-a nuggets is almost all he would eat. He could also eat their chicken salad sandwiches - that bread is lightly toasted and just seemed to work well. Now he is 100% feeding tube.

Take care of yourself Missy, miss seeing you at the group meetings.

 

[Miss]

How do you know when it is time to start using the feeding tube?

 

[sadiemae]

Ask for a swallow study at the VA. They will give him different things to eat, observe how he does, and they will make a recommendation. When Les had his done, she said he was fine, and put no restrictions other than common sense. It is actually a speech pathologist who will do this. We also asked for a Barium swallow study, which was horrible. Wont ask for that again! HUGS

 

[Phil's wife]

It was gradual. I started trying to supplement his daily intake when I saw him not eating enough -- he resisted for a couple of weeks or more. I would bring it up every few days or so -- sometimes he would agree to an ensure. Then one day I could tell his mindset had changed a bit and he was willing for me to give him the ensure in place of meals. At that time he just didn't have the drive to eat a lot so he knew he needed them. Then all of a sudden around Thanksgiving he just felt like it wasn't worth the effort to try to eat except for an occasional few bites a few times a week. That's when we got the Iso Source that insurance pays for and Apria sends us a shipment monthly. Even the occasional few bites stopped around Christmas. So, it was an ease into process.

Also, he uses the Biotene moisturizing spray to compensate for the loss of drinking to moisten his mouth. He has eased out of that now too. He says he wants a drink, but I only see him take a few sips a day.

 

[Phil's wife]

Phil had a barium swallow done middle of Nov and it was really good. Minor splashing - no more than a non-ALS person would do. His swallow wasn't his problem - it was manipulating the food/drink in his mouth to swallow stopped him from eating.

I still think it is crazy how this awful disease affects everyone so differently.

 

[Miss]

Interesting. Terry had a swallow study done, and it too was great. Nothing out of the ordinary. However, he is choking quite a bit now. It takes about an hour to an hour and a half to feed him a meal. He is fighting the use of the feeding tube, though. Right now, I think he is probably getting enough to eat because he eats 4 or 5 times a day. It is taking about 6 hours of the day for me to feed him, and I'm getting little else done!

 

[Miss]

Stephanie,

Can Phil still talk? Terry is almost impossible to understand. Most of the time, Daniel and I are the only ones that can figure out what he is saying.

 

[Phil's wife]

Yes, he is still talking - a bit better than he was a month ago I think. He has not lost movement of any limb completely either. He is overall very weak - and his right hand has very little movement or strength. I was surprised when his breathing became affected so much recently, but I have not seen the apnea when he sleeps in the last few nights. Before that, as soon as he would fall asleep he would breath 7 times and stop for 20-40 seconds like clockwork. We did get a bone scan for his cancer the other day and no new spots showed up - in addition the ct scan showed reduction of places in his lungs. Perhaps if this is a paraneoplastic syndrome causing the ALS it is being slowed down due to the cancer getting smaller and releasing fewer antibodies. The doctors here in NC have sent blood work to Mayo to see if more can be known. Sorry to get off on a tangent...

 

[Miss]

I certainly hope it is paraneoplastic syndrome. Wouldn't that mean that the ALS would halt in progression if the cancer can be brought under control?

 

[Katie C]

Missy...sounds like his tongue is losing the strength to dislodge the food. I'd avoid those foods that stick, or soften them with liquid to make them easier to manage. Bread can be easily dunked in broth or toast into coffee for example. We found that while Glen could still manage his sausage sandwich from Starbucks in the morning, his dinners had to be pureed or he would choke. Fatigue becomes a huge deal.

 

[BarryG]

That is what happened to me, as my tongue weakened I was unable to move food around in my mouth to be chewed and swallowed. Occasionally food would get stuck on the roof of my mouth and I would stick my fingers in my mouth to dislodge it and move it to where I could chew it, not pretty or nice table manners but neither is choking.

If it is taking 6 hours a day to feed that is just silly and is taking more energy (for him as well as you) than he is getting out of it. I have not eaten in over a year so I fully understand how hard it is to give up food and all of the tastes, textures and culture of eating but there comes a time to realize that it is not possible to eat food by mouth. If you have a peg tube, use it, if not for all of the nutrition and hydration then most of it and save the mouth for the goodies that are easy to manage.

 

[Miss]

We met with a pallitive care doctor today. I think he might have convinced my husband to start taking some of nutrition through the peg ( he has had it since July). Hopefully, he will do it when the formula arrives.

 

[sadiemae]

What type of formula? Les started with Ensure, and it made him feel real bloated and gassy. We have since switched to Jevity, and he tolerates it a lot better.

 

[LizT]

Yes, Missy, as sadiemae said, there are different types of formula so if your hubby isnt liking one or another, remind him that there are more to try. Best of luck to you.