Loss of appetite and the chore of eating

Micaela

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Hello to all,
I am 66 years old and I have been diagnosed with upper & lower ALS in July 2019. I have problems with my voice, swallowing, weak hands, twitching and cramps. I have no respiratory issues or limb problems. Indo feel exhausted most of the time, however.
Just the thought of the next meal makes me feel nauseated. My partner does his very best to make different tasty meals and i do take some highly concentrated lactose free protein drinks. I'm managing to just keep my weight although i have been told to try and put weight on.
The thought of feeding tube really scares me. Can someone give me some guidance, personal experience....
Thank you
Micki
 

KarenNWendyn

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I’ll just say that the tube sounds scarier than it really is. If your respiratory status is good, now is the time to get the tube and you should recover quickly and uneventfully. There is pain for a few days and it gets better by the day. It’s such a pleasure to be able to get nutrition without choking. Your energy and weight will improve and you’ll feel so much better overall. Weight loss speeds progression, so it’s time to change that. I have no regrets about getting the tube when I did.
 

Micaela

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I’ll just say that the tube sounds scarier than it really is. If your respiratory status is good, now is the time to get the tube and you should recover quickly and uneventfully. There is pain for a few days and it gets better by the day. It’s such a pleasure to be able to get nutrition without choking. Your energy and weight will improve and you’ll feel so much better overall. Weight loss speeds progression, so it’s time to change that. I have no regrets about getting the tube when I did.
Thank you for your reply Karen
I was wondering concerning this kind of system: do you have intestinal problems? Gas, constipation etc? Do you also eat ? Is it a time consuming task?
Thank you
 
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Nikki J

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Hi sorry to have to welcome you

another vote for a tube asap. My sister delayed far too long and because of severe malnutrition and compromised breathing it was a hard surgery. She was glad she got it and admitted she was sorry she did not get it when it was first recommended. I have promised myself not to delay when I am told to get one.

caring for it is extremely easy and much less energy and time consuming than trying to eat. As long as you can safely do so, though, you can eat for fun while getting your nutrition through the tube
 

nona

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me three on the tube, the sooner the better for recovery and easing into it. For the first few years I used mine to supplement meals and add calories and water, and now it's all I use except for the occasional few spoonfuls of ice cream. I have no gas or bloating from the formula (i use Kate Farms peptide 1.5 ) but I did have trouble with the more commercial formulas loaded with sugar and junk. I don't blame the tube for that ; I would have had the same problem drinking it. I do three feedings a day and each is about half an hour.
 

affected

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me four on getting a feeding tube sooner than later, and welcome to this place, though I wish sincerely we didn't have to welcome you here.

Honestly, the longer you wait the more you progress, the more your digestive system slows and the harder the adjustment is.

Getting it early means one more thing taken care of, and you can still eat and drink by mouth as long as you want to and it is safe too.

HOWEVER you don't have to rely on having to eat everything by mouth. Think of it this way - you can ensure you get plenty of fluids and are hydrated, and that you get lots of calories and protein through the tube. Then you can enjoy to eat your very most favourite things by mouth, at your leisure, without exhausting yourself! That is a win-win-win over and over 🤗
 

Micaela

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me four on getting a feeding tube sooner than later, and welcome to this place, though I wish sincerely we didn't have to welcome you here.

Honestly, the longer you wait the more you progress, the more your digestive system slows and the harder the adjustment is.

Getting it early means one more thing taken care of, and you can still eat and drink by mouth as long as you want to and it is safe too.

HOWEVER you don't have to rely on having to eat everything by mouth. Think of it this way - you can ensure you get plenty of fluids and are hydrated, and that you get lots of calories and protein through the tube. Then you can enjoy to eat your very most favourite things by mouth, at your leisure, without exhausting yourself! That is a win-win-win over and over 🤗
Thank you for your reply and that of the other members all pointing in the same direction. I forgot to mention that i am an American living in France but being cared for both at Mass General and in Paris. I am soon to be given Edaravone treatment and will ask about the feeding tube at this time, although in France Edaravone is only given if you are in early stages and am a little afraid to ask because I really want to get this treatment that is free of charge here.
I am also a little worried about a tube sticking out and it demoralizing me and would love some feedback on this.
Its wonderful to be able to communicate about these issues, here in France there is very little in that respect
 

Nikki J

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There is an option to convert to a Mic-Key button after healing. My sister planned that but once she had the tube decided it wasn’t worth it to her. She was young and petite and cared about her appearance but the tube wasn’t noticeable with her normal clothes.

I go to MGH too 😀

re Edaravone I expect the French rules are similar to the US insurance ones which are recent diagnosis which you have ,ok breathing and at least 2 on all your frs categories. Sometimes there is a requirement of dropping frs at least a point a month. If you have worries about being too progressed the sooner you ask the more likely you would be to be approved

I understand all this is hard but don’t let your fear keep you from being proactive!
 

KarenNWendyn

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I love this drawing of the Mic-Key low-profile button that is in their patient informational brochure. This says it all.
85F99BB8-C2D8-4856-AFD1-B081DBC2E99C.jpeg
 

affected

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What I would say about that drawing however is that you will not have a pinched area of skin around the button whatever type you choose. I wonder why they made it look like it is all drawn in and pinched.
 

nona

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I converted to the mickey about three weeks after the initial tube placement. Did it all at MGH and they were wonderful. You'll be there for one night and they teach you how to use it. The initial tube is not visible through clothing but I had an allergy to the tape that held it in place. I love the mickey. I have it replaced every six months which takes ten minutes and doesn't hurt.
 

Micaela

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me four on getting a feeding tube sooner than later, and welcome to this place, though I wish sincerely we didn't have to welcome you here.

Honestly, the longer you wait the more you progress, the more your digestive system slows and the harder the adjustment is.

Getting it early means one more thing taken care of, and you can still eat and drink by mouth as long as you want to and it is safe too.

HOWEVER you don't have to rely on having to eat everything by mouth. Think of it this way - you can ensure you get plenty of fluids and are hydrated, and that you get lots of calories and protein through the tube. Then you can enjoy to eat your very most favourite things by mouth, at your leisure, without exhausting yourself! That is a win-win-win over and over 🤗
Hi, thank you for all the feedback.
I just however talked to my nurse here in France and she is saying that she has other patients with feeding tube but that it takes 1 to 1 and 1/2 hours for 1 meal of 500ml to go through. Which means to me being hooked up to a bag for at least 3 hours a day which seems so much time . I thought one the replys I got mentioned 1/2 hour. Any info on this would be so helpful.
 

Nikki J

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Hi again

people do feedings in different ways. The nurse is describing some kind of gravity or pump feed. What MGH recommended to my sister was a pump feed overnight ( she was getting all her calories through the tube). Ultimately she chose instead to use the pump for a couple of hours 3 times a day. She would ask for it when she got hungry. She was in a wheelchair and it didn’t interfere with anything. We just hooked her up and carried on.

others do feedings with a syringe either pushing it gently in or holding it up and letting it flow in. These are much faster.

there isn’t one way and you can work out what works best for you
 

KarenNWendyn

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Micaela, my feedings take about 15 minutes each. I use the Kate Farms peptide plus extra water, and it takes under 15” to flow in using the gravity method. If we use thicker formula, we use the syringe plunger to push it in, and it takes no more than 15”. Some prep time is needed to set things up and then clean the equipment afterwards. In the overall scheme of ALS care, this is not one of the more time consuming chores. But of course it all adds up.
 
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