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sweetpea

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I'm caregiver of my 56 year old husband with Bulbar Onset ALS. He struggles so with chewing and manipulating food in his mouth. He can drink out of a straw, and I think he is having problems with that now. It's as though he comes up gasping for air after a drink from the straw. He loses control of food, also, and has multiple coughing spells - eating or not eating. I read somewhere that if someone is coughing while eating they are aspirating - is this true ?

Our Neuro said that the rules for feeding tube are 2-3 bouts of non-weather related pneumonia. Is that his "rule" or insurances' rule? Hubby has lost weight (his normal lookin' good weight was about 155-160; he's now down to 146.) We met with the nutritionist who suggested upping his calorie intake, but if he's struggling to eat, is that the answer ? It takes the rest of the family 20-30 minutes to eat a meal; it takes hubby an hour to 90 minutes. He likes Ensure, and we try to get 2 in him per day !

Sorry this does not seem explained very well. We meet with the neuro again in April, and I just feel deep down that I need to be prepared......
Thanks in advance for help in this matter.........sweetpea
 

emjoi

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Go talk to your Doc again.
If you ever feel like you Don't Know, then don't be shy, don't feel like you should wait... go ask someone who knows.

In short, you want it before things get too difficult.
You don't want him unable to eat, but waiting a week for the procedure.
It's a big emotional decision to do it, but comparatively minor as far as surgery goes.
 

sweetpea

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thanks, emjoi.....my cousin once told me that "the doctors are there to SERVE you and your husband - that's what you PAY them for"!.....You're right about waiting for the procedure - he could lose even more weight before we get schedule for the "surgery"........
 

Al

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He sweetpea. I've never heard of that "rule" for a feeding tube. Usually it is repeated bouts of choking and large weight loss in a short period of time and just plain difficulty in eating and drinking. Coming up gasping for air after drinking from a straw could be a signal of weakening of the lung and diaphram muscles. I agree with emjoi. I wouldn't be waiting until April for an appointment.
AL.
 

sweetpea

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Thanks, Al....It just seems like this is happening so fast. We've had 2 lung capacity tests (if that's what ya call them), and he has had "marked decrease". We're scheduled for another one next week. He is no longer able to speak - at all. He's also been diagnosed with Frontal Lobe Dementia. He has no sensation in his eyes now, so the contacts were taken away by the eye doc. Just seems like we just keep taking away from him.... :(

He still has a sense of humor, tho. I'd asked him if he'd had his Ensure this morning, and he shook his head "no". I said, "do you want me to kick you in your b***? He got up out of the chair, and turned his b*** towards me, so I "kicked" it with my big toe.....I love those moments.....

We have very little family support, so thanks to all of you for "holding my hand" thru all of this.....like your quote says, Al, live today like tomorrow may never come......and that we've been doing......sweetpea
 

Al

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Sorry things aren't going all that well. If we can help at all let us know. Other than sending buckets of money. LOL. AL.
 

Jamiet

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Sweetpea,

Everything i have read and everyone i've talked to, says that it was a great decision and it was not much trouble.

If he's having that much trouble, it will probably make things much easier.

I don't have one, but i think he can still eat and drink, but you can supplement his meals through the feeding tube.

Good Luck!
 

edna may

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I also have been told to get a feeding tube. I made a statement on this forum a few weeks ago, saying " I would hate it but would do it" Recently I attended a support group, one of the fellows had just received his Feeding tube. he was happy with it & showed it to us. I was shocked, it was not what I had imagined. It made me realize I was about to make a decision with my eyes closed. I have made an appointment with our ALS nurse & plan to learn all I can before my final decision. I will fill you in after my appointment. I am sure many of you already have one. So any input would be greatly appreciated. EM
 

lunarruna

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Sweet pea...
That thing about rules of having pneumonia before getting a feeding tube is just ridiculous--pneumonia is life threatening and to be avoided at all costs, esp for a PALS. A PALS with bulbar ALS knows a feeding tube is inevitable (if that is their choice), so most recommend getting them early before complications set in. If you are ready, demand a feeding tube or get a new doc. That is just hogwash.
We were very happy when my husband got his---took so much stress of eating, weight loss away.....they are a god-send.
Good Luck, Beth
 

emjoi

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edna may said:
I also have been told to get a feeding tube. I made a statement on this forum a few weeks ago, saying " I would hate it but would do it" Recently I attended a support group, one of the fellows had just received his Feeding tube. he was happy with it & showed it to us. I was shocked, it was not what I had imagined. It made me realize I was about to make a decision with my eyes closed. I have made an appointment with our ALS nurse & plan to learn all I can before my final decision. I will fill you in after my appointment. I am sure many of you already have one. So any input would be greatly appreciated. EM
Edna, I know it looks scary to see someone else with it. But you seem like a woman who hasn't given up on life just yet. It may seem a bit of an indignity to use a tube, but it's a small price to pay to stick around with your family and loved ones a while longer.
 

hboyajian

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It was recommended to my father that he get a feeding tube due to difficulty swallowing and weight loss. He never had pneumonia, but there was an increased risk of it because he was aspirating small amounts. In addition to being helpful to maintain or increase weight, having the tube was supposed to help avoid pneumonia. I think it is very strange that you would be told to wait on the tube until after suffering through 2 bouts of pneumonia, especially since pneumonia can be extremely serious if not deadly to a PALS. If you can, get an appointment directly with a gastroenterologist who would be doing the surgery for the PEG tube. This person would be able to answer many questions. Also, if you are concerned about the advice your neurologist is giving you, it could be worth it to seek out the opinion of another neurologist, preferably at an ALS clinic where people will have extensive experience with the challenges and needs you are facing.
While the PEG tube surgery is minor for most people, it can have adverse effects on an elderly person. The tube itself is not the problem there, but the affect on the system of the surgery itself can cause complications. I think I remember, Edna May, that you are in the older age bracket. I think it is worth questioning your doctors closely about this issue. It may still be in your best interest to get a tube, as the health problems without one could be worse than any trouble the surgery could cause. I am convinced that my dad's death was hastened by the PEG tube surgery. Our experience was different than most people here, I know, but one cannot assume that getting a PEG will automatically increase life span.
 

quadbliss

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There is another serious health concern with not getting a PEG soon enough. If a PALS loses muscle mass due to weight loss, they will probably not gain it back. Obviously, you want to maintain all the muscle you can.

Mike
 

edna may

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hboyajian, Thanks for the input, & yes you are right I am 8oyrs old. & the only reason I would go for it, is my husband & I are very happy together.(60yrs) if I was on my own, I would not have it done. I feel we are very lucky to have these choices. Many other illnesses the patient dies before you have a chance to say goodbye. We have a chance to mend any fences & let friends & family know how much we care for them. Have a good day everyone.EM
 

anne

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Hi Edna. My mom just turned 76 and got the peg feeding tube on Jan 23rd. Eating became very stressful for her. She was choking on every bite and had just started to lose weight. 4-5 pounds prior to getting the tube. If you are thinking about getting the tube you should have it before you start to experience breathing problems. Anne
 

edna may

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Thanks Anne, I already have breathing problems. I will make my decisionr Wed. after I talk to the ALS nurse. Have a good one. EM
 
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