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shiningsmile

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CALS
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I am new to this forum. I stumbled across it while doing some research for a dear friend who was diagnosed roughly two years ago with ALS. Her ALS started in her legs and then to her arms and now has taken her whole body. She had her last doctors appointment about 4.5 months ago and at that time she had a 16 on her FAV test.

She recently had a feeding tube placed and expierenced a lot of complications. She ended up in the hospital. her body is not absorbing the food thats being placed in her stomach through the tube. She was severly dehydrated when she entered the hospital but has recovered some water weight through the IV. The doctor decided to keep her until the feeding tube issue was resolved. He thinks that the ALS has effected her muscles involved in digestion and elimination.

All this history leads me to the questions I have. At this point she would like to go home and forget about trying to figure out the feeding tube. She would like to just take water and some pedialyte, and her meds through her tube and try the best she can to eat. She can't swallow very well at all anymore and getting the simplest thing down is a chore. All of us, her family, caregivers, and many many friends are wondering what to expect next. If she goes home and can't consume much food but can get some nutrition and fluids through her tube what kind of quality of life is she going to have? How long can one survive in her state? Doctors won't really say.

I am hoping maybe someone out there is can lend some advice and support, possibly someone who has had to go through this terrible disease with a loved one and can share their expierence. Thank you all in advance.
 

califsand

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sant barbara
The Doctors can't predict what will happen because ALS can be so unpredictable... as her food intake and digestion of it decreases, she will lose weight and become thinner. Lack of nutrition can cause lots of side effects, she will become weaker and it can affect everything from skin (can get dry skin, rashes, bruise more easily) to organ disfunction. It is of course best if she can digest nutrients through the tube from either formula or ensure, or even slim fast... being hydrated is important, but without nutrients her body will starve.

I haven't heard of ALS affecting the muscles that aid in either digestion or elimination... but symptoms do vary from person to person. Per the ALSA.org site, "Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected."

My father has had trouble taking nutrients through his tube but it has been gradual. He is now down to 4 ounces of formula per day through the tube and sometimes even that makes him vomit. We hydrate but it is not as much as I would like, because he can only tolerate a certain amount. What I've seen with him is him become painfully thin, like the people you see in the documentaries about malnourished/starving people in our poorest nations. He is weak, his urine is thick, but I don't think he has hunger pains because it has been a gradual decrease in feedings.

While Dad could still swallow I made him milk shakes using ensure or formula, a banana, tons of ice cream and though it took him a while to drink them, he would stand at the sink for an hour or so until he was done. We put protein powder and other vitamins in them... if she can still swallow that may be an option.

Maybe trying other types of things in the feeding tube will help? There are different types of formulas with varying calorie counts, maybe her body is having trouble with some kinds but would be okay with others. There are dairy based ones, soy based ones, etc. My Dad had a harder time with the higher iron & higher calorie ones, they upset his stomach and made him vomit. We did have to change it around a few times before we found a good match for him.

I hope that things work out the best that they can for you, please keep us all posted on things.

Sandy
 

shiningsmile

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CALS
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Indiana
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Liberty
Thank you so much Sandy, I appreciate the advice and you sharing your thoughts. We are waiting for Nat to get released from the hospital. She has tried ensure and another brand and she can't tolerate. She can only digest about one ounce per 8 hours. I will suggest slim fast. She already looks painfully thin. She is about 97 lbs. I am not sure how weak she is because she has no movement capabilities. She does mention being very hungry. I have read several places that dying from malnutrition is worse then the breathing issues. I am just so concerned of what is to come. We all pray constantly and will continue. I will also pray for your father. Thank you so much again! I will continue to post with updates on her condition.
CA.
 

BethU

Extremely helpful member
Joined
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PALS
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I am praying that the doctors can keep your loved ones comfortable at this terrible time.

BethU
 

gagirl

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Hey there. My husband has had ALS for appros. 5 1/2 yrs now. Since Jan. he has progress rapidly and his rectal muscle and the muscles that work the bladder have been effected. He has the urge to go to the restroom, but does not have the muscle strength to push anything out. He had a catheter put in yesterday which should be a great help. Because he was unable to empty his bladder on his own, he constantly got infections and suffered with fluid swelling in his hand, feet, ankles and legs. He takes large doses of stool softners and laxatives along with suppositories to get his daily clean out. We have pretty much learned as many others have, this disease effects everyone completely different, but basically if its a muscle, there is risk it can be effected. He gets his feeding tube tomorrow so we will see how that goes. Good luck and God bless.
 

CindyM

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Learn about ALS
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I am wishing both of you well. Let us know how his tube insertion goes!
 

gagirl

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My husband got his peg tube this past Friday and all is well. His formula is Jevity 1.5 and takes 1/2 can in the morning and 1/2 can in the evening the first week, then beginning next week he will go to 1 can in the morning and 1 can in the evening; eventually working up to 5 cans a day. He can still eat small bites of soft foods so we are just supplimenting his diet right now and will increase his peg feedings as he is less able to eat. He is doing great and already commented that it has taken alot of pressure off him because he was exhausting himself trying to eat an entire meal. And it is so easy to feed him through his peg. I was so concerned that it would be something really difficult for me and that I would hurt him. Not the case at all. So glad we did it.
Windy
 

BethU

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Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
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Los Angeles
So glad that it went so well. Thanks for sharing that .... I know it will help a lot of people get through that procedure, knowing such a good outcome.

Blessings!
BethU
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
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NW of Toronto
Thanks Windy. It's good to hear stories with positive outcomes.
AL.
 
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