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Aswanson

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Mar 1, 2016
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33
Reason
CALS
Country
US
State
NH
City
Wakefield
Hello again...

Nothing new from the dr's since we were last there 3/17 when they said my husband had pseudo bulbar palsy (although the report from that day says bulbar palsy and suspecting bulbar ALS)
EMG is scheduled for 4/21

The question I have is in regards to swallowing. My husbands diet mostly consists of softer foods such as oatmeal, eggs, shakes, soup, chicken nuggets and the like. I get extra protein in everything for him! When he has things that need more chewing such as turkey we had at Easter his jaw muscles got very tired and sore after a while so he had to stop.

He hasn't been able to move food to the back of his throat b/c of lack of tongue movement, I've noticed a lot more so recently, so he will have to use his finger to push/wipe food back out of spots of his mouth to get it there.

Just last night he was eating dinner and took a break...he mentioned that for the past week off and on if the food is bigger or not soft his throat gets tired of swallowing. If this makes sense?

My question is should we continue to modify his food and I know you all will give me some great tips on that or are we getting close to the point of needing a tube? We appreciate all your tips and advise!

Thank you,
Amy
 
I would consider a tube. In general the sooner the better. It sounds like he wants one at some point? He can still eat if he can safely swallow. You want to do it while breathing is good and before weight loss if possible. Since he is getting tired with some textures modification will probably help for a while but if a tube is in the plans getting it now will allow it to be used for meds, fluids or supplemental nutrition if he is tired. He can still eat for fun. I do worry he might start eating less because it is too much work.
Can you manage for some time without one ? Probably but swallowing is not going to get easier and it can be a slippery slope.
 
I agree w/ Nikki. If he's getting a feeding tube, don't wait! If eating is tiring - it's time. A feeding tube takes away the stress of ensuring adequate nutrition and fluids for a PALS.

In the interim, lightly cooked fish is much easier to chew than chicken and can be smothered in sauce. He might find it easier to swallow food if he tucks his chin in. Also, solid food should be finely chopped so it's easier to chew.
 
I can completely relate. I'm 18 months in to bulbar onset A L S. While my swallowing muscles are fine, I can't control them. Food goes down OK, but liquids are a problem. Sometimes I swallow before my throat opens to let the liquid fall down. Other times I swallow lots of air. Or my epiglottis doesn't close and I choke. And like the OP, my tongue is dead and can't move the food towards the teeth, I put food in my mouth and it just sits in the middle while my jaw goes uselessly up and down. Some food gets stuck on the roof of my mouth and I have to pick it off with my finger. I still eat solid food, cutting it up into very small pieces, but it's a lot of work. A meal takes me about one hour. I'm going next week for a consultation on getting a tube.

One question: I take lots of vitamins and supplements, in tablet, capsule, and gel caps form. Can these things be pushed through the PEG tube ? Must they be crushed or opened up ?
 
Bob-Yes you crush pills or empty capsules and dissove in water. You would cut open a gel cap. Only problem arises if extended release. You can probably find liquid or powder versions of some of the pills and gelcaps. Capsules are easy enough to open.
 
Depends on their shape, diameter and composition -- but many more vitamins/supplements than you would think are available as liquids or in more dissolvable forms than many drug stores carry. For rx, you cannot crush extended release forms [there is a "do not crush list" on line] but often immediate-release forms are available as well.
 
Anything that goes through the feeding tube needs to be crushed and ground to a powder.There are pill crushers available for this but if the pill is still in chunks try letting them set in water for a bit before putting them down the tube. Gel capsules will take a little experimentation. Some can be poked open and the liquid or gel squeezed out. Others may slowly disolve in water. Any capsule can be opened and the med, if powder, put down the tube. But any capsule or pill that has "beads" in it contains a time release med. The bead have coatings of varying disolvability so that you get the med slowly over time. If you crush the beads, you get the full dose right away. That can make you feel sick and doesn't extend the effective time of the dose as intended. I don't imagine any of your vitamins are time release but many meds are. There is an online list of uncrushable meds at http://www.ismp.org/Tools/DoNotCrush.pdf I have a lot of info about the types, procedures, care of feeding tubes on my website, http://www.alsfrombothsides.org Don't expect to get much information from your doctor, and recognize that the information you will be given by a nurse will be hospital procedures, not at home care!
 
Putting food in a blender, adding some water and turning it into a soup might help in the meanwhile.
 
Thank you Alex for your suggestion :)

Amy
 
Nikki,

Thank you so much for your reply! I can't say he necessary wants a tube, but he also knows he's having real trouble and it's getting worse. He's holding steady at a 20lb loss since the end of January luckily.
I appreciate your thoughts....it will be a conversation hubby and I will begin to talk in depth about.
Amy
 
Nikki,

Thank you so much for your reply! I can't say he necessary wants a tube, but he also knows he's having real trouble and it's getting worse. He's holding steady at a 20lb loss since the end of January luckily.
I appreciate your thoughts....it will be a conversation hubby and I will begin to talk in depth about.
Amy
 
Ells,

Thank you for your response and tips! I'll start adding fish to his menu. We usually have a lot of ground turkey for dinner with sauces, graves, etc so it's softer...but it's not as fattening though.
Amy
 
Bob,

My husband has that issue with liquids as well....almost like its dumping down your throat? I'm so sorry to hear of all the trouble you're having ....I hope the consultation goes well and the peg tube can be put in soon. Thank you for asking about vitamins, meds, etc through the tube. We recently purchased some liquid vitamins for him to take daily as swallowing pills is no longer an option. Good to know that will work nicely.

Amy
 
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