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Anyone have experience with late stages Lou Gehrig's


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My mom is there. She lives 9 hours away. Been heading out there once a month for a long weekend to help.

 

She's losing the ability to feed herself & swallow. Looking for food ideas that worked. Baked potato soup was a good texture/consistency. (She's strongly opposed to the feeding tube.)

 

My husband & son are heading out this weekend for son's scholarship interview. Want to send some things out with them, and just drawing a complete blank.

 

Any tips, even if they're not related to my specific question, I'd appreciate. Such a difficult journey.

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My aunt. She finally consented to the feeding tube as supplemental measure after the doctors explained to her how her body would respond to starvation and dehydration. As long as she could she did eat pureed foods - think baby food consistency. eventually however the muscles in her esophagus stopped working and the tube was the only method she had available.

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I'm very sorry about your mom's illness. My 16yo son gas a neurodegenerative disease, but not ALS. There used to be a product called Thick-et that you could add to anything (I.e. Ensure) to make it the perfect consistency for the specific patient's swallowing ability. Try googling various spellings of Thicket and dysphagia and see what comes up to buy. I will pray for your family...

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I'm very sorry about your mom's illness. My 16yo son gas a neurodegenerative disease, but not ALS. There used to be a product called Thick-et that you could add to anything (I.e. Ensure) to make it the perfect consistency for the specific patient's swallowing ability. Try googling various spellings of Thicket and dysphagia and see what comes up to buy. I will pray for your family...

Simply Thick is another thickening agent that my daughter used. It doesn't continue to thicken after being added to the food like thick-it. A speech therapist that works with people with swallowing disorders may be able to help as well.

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:grouphug: I don't have any specific advice, but I do want to offer my sympathy. My aunt passed away of ALS about 10 years ago. It's usually pretty progressive, but she lived with it for almost 15 years before she succumbed and I know it was very difficult towards the end. She was in another state, though, so I didn't witness much personally. Another aunt was her main caregiver,and I know it was hard. I'm saying a little prayer for you and her.

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Thanks for that input. I will look for those things. Last time I went out, I showed my Dad how we make smoothies, and he's been making those. The ensure type drinks/muscle milk really upset her digestive system. We tried the powder kind from GNC as well. I try & make anything I think she'll eat. Made several soups.

 

Her doctor has tried (as have I) to talk her into the feeding tube MANY times, but she still stubbornly says no. She's losing 3 or so pounds a month, believe she's down to 110. She's on the breathing machine at night & on medication to keep her from panicking.

 

Her doctor said for her age (she's 64), 2-1/2 years is the expected survival, but it hits each person differently. It's been 3 years since diagnosis. I know the medical people say I should be thankful; I don't feel thankful...as I'd like my mom around for much longer.

 

Sorry for whining!!

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I'm very sorry about your mom's illness. My 16yo son gas a neurodegenerative disease, but not ALS. There used to be a product called Thick-et that you could add to anything (I.e. Ensure) to make it the perfect consistency for the specific patient's swallowing ability. Try googling various spellings of Thicket and dysphagia and see what comes up to buy. I will pray for your family...

 

 

I just picked up Thick-It at Rite Aid last week for my son's private speech class.

 

 

I'm sorry to hear about your mom.

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It's ok to whine over such a loss. And being so far away that you can't be there for her more often. ALS is a terrible disease, and it can be a slow deterioration. I cared for a big, strong man who eventually passsed of ALS. He was a major hiker, even into his seventies, and always told me stories of hikes he did in Yosemite. He had the loving support of a tiny wife, and between the two of us we did the best we could. He ate seven grain cereals for breakfast, and everything else was pureed. She will take the feeding tube when she is ready, or not. I think a person's dignity needs to be taken into account in these situations, and if she is refusing it, I imagine it is because it is all she can do. They get to feeling very helpless about things, so this is one way she is able to have some power. It is so hard to lose someone this way...I pray you find peace in this so that you can enjoy what time you have with her.:grouphug:

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:grouphug:You are not whinning. You are in a difficult situation looking for answers. If she is needing calories there is a substance called Scandical that I used with children needing calorie boosts (like children with spastic CP and cystic fibrosis). They also make a product called Scandi shake that makes flavored milshakes. http://store.axcanscandipharm.com/home.php?cat=3 It is possible that insurance will pay for this with a prescription. The scandical is supposedly flavorless but it does change the texture and consistency some of some foods. For one child I was supposed to add it to everything. Another friend would add scoops of dry milk powder to anything she gave her child. It would work like protien powder by giving a boost to the calories in food.

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I am not sure what other eating tips I could share besides the smoothie idea and the ensure. ALS has taken 5 of my family members including my father 3 years ago and an aunt who is really deteriorating from it now. I know my dad got to the point of not wanting to eat much partly because it took so much effort and air to actually eat. We made lots of fattening smoothies with high calorie ice cream mixed in with fruit. He also drank ensure daily. I would just think, what could you get her to eat that has the most calories and nutrition packed into a small amount (due to the loss of appetite).?

 

So sorry you are going through this...........I personally know how you feel.

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5 of your family members...that's horrible!!! It's hard enough going through this with my mom.

 

My mom is also diabetic, which complicates the whole eating thing. After Christmas (Christmas has always been the highlight of her year), she's really been battling depression. Mentioned to my Dad, maybe she should just give up & quit eating. (That's how her favorite aunt died).

 

We keep going. I keep calling to cheer her up. I keep trying to think of new things for her to try to eat. Keep trying to hold my Dad's spirits up.

 

They had a special healing service for my Mom. 3 other people walked out healed, but not my mom. I've struggled with that also. Why some & not others. I know, when she gets to heaven, she won't want to come back, but selfishly, I want her here. Healthy & happy.

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