Brooke Eby
Region: US
Sunday 18 May 2025 03:11:42 GMT
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lolonugget :
You’re giving your family the ultimate gift by making these decisions for them.
2025-05-18 04:40:13
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schachererkg :
Feeding tube can ALSO be used for comfort meds and gastric decompression with nausea/vomiting later in disease progression so it may help a lot with Non-food things :)
2025-05-18 03:32:35
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Letters for Laura -ALS Warrior :
Brooke - I got mine under Interventional Radiology, so I was awake the whole time, they just give you good meds to not care. So you can have it done after the 50% FVC score.
2025-05-18 03:29:29
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Summer ☀️ :
Idk. If I can’t enjoy the taste of food anymore and need smelly formula through a tube in my stomach just for the sake of living maybe a few months longer- what’s the point?
2025-05-18 04:06:36
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norbratt :
My disabled daughter got a feeding tube. We were against it, but boy, did it help.
2025-06-01 21:38:20
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Kim Sunner45 :
I’m dealing with late stage cancer and have set up death with dignity. I worked for hospice and have been with many patients that have exercised this option. Is this an option for you?
2025-05-18 03:38:05
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GGinWA :
Money is absolutely a reason why people with ALS don’t go full 24/7 care with ventilator. My BFF made her own choice. You are entitled to make your own! ❤️
2025-05-18 03:44:33
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EmAre :
Hospice nurse here…been following you a couple years, and have had many ALS patients as well as a former spouse with ALS. My fear would be comfort meds…the route. Just my two cents worth. 🫶🏻
2025-05-18 03:48:00
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Kira 📚 :
Thank you for sharing such personal moments. Been silently cheering you on. Sending you all the love and hugs. ♥️♥️♥️
2025-05-18 03:19:29
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pasttenseofdraw.mp3 :
I don’t have ALS but I have a j tube, I think ppl tend to view them much more negatively than they deserve! You can still eat+drink with a tube (to whatever degree is safe for you, obv), it’s just like a belly piercing 😂 and can be taken out in the future if needed!
2025-05-18 04:39:21
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User85689857975 :
Do you believe in God?
2025-05-18 20:50:57
0
hello27964 :
I was on a ventilator for a month in the ICU. It felt like being buried alive. I would rather die than ever be on a vent again. I am now DNR, DNI and no peg tube. It’s a very personal decision. I am all about quality over quantity.
2025-05-18 05:04:46
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Gillian :
my dad was an emt. he had to have an AD to be listed for liver transplant. he was adamant about comfort measures only. no trach no peg. he ended up sustaining a head injury before he could have his transplant, but that AD was such a gift in navigating treatment. we didn't have to make any decisions for him, bc he had already made them for us.
2025-05-18 05:05:40
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Jen :
Yes these are super personal, but it’s important to normalize these types of conversations. Loved ones should know your wishes, even if you don’t have a progressive condition. They should know what you would want if they have to make decisions for you.
2025-05-18 03:27:13
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riss :
I’m an onc dietitian who works with feeding tubes daily. People have made them seem scary for so long and it can deter people. But they really are very helpful tools that can relieve a lot of stress for people struggling to eat. I’m so glad you’re having this hard conversation about what decisions you’re considering!
2025-05-18 11:23:56
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DisabledatDisneylandParis :
You could always have an NG tube. They always go for things like PEGs but NG is an option. We did a peg for my Nan with progressive MS. It was a hard choice as my grandpa felt like it was giving up but it was positive as it left her swallowing for enjoyment
2025-05-18 19:46:47
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Howdyhowdy! :
Feeding tube was SO helpful for us (my mom). She only used it for 3 weeks 🙁, but it made a huge difference. She didn’t want a trach either.
2025-05-18 04:37:08
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cricket 🌊🐈⬛ :
Feeding tubes are not nearly as bad as people make them out to be! I have had an NG for almost 3 months and I have a g tube consultation on Tuesday, I’m super excited and it’s nice to have freedom again.
2025-05-18 16:05:12
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Nichole :
Hi Brooke! I’m a g-tube mama and I’m glad you’re considering one. It has been such a wonderful tool for meds, as well as food. Sending lots of 💗
2025-05-18 03:42:24
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Ron :
What is five wishes? Social worker and always looking for resources. Also planning to go into hospice:palliative care
2025-05-18 03:55:39
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MariaMeri :
the trach would be tough imo. if you get it and hate the machine... you really can't go back. feeding tube is the opposite, it might help your quality of life bc the nutrition and comfort meds
2025-05-18 06:01:12
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Rebecca❤️GLN :
I was the nurse to my best friend for over 10 years with ALS, She did have a trach and feeding tube, because we are able to suction her so she could breathe better but we laughed we had the best times We went all over the place ❤️
2025-05-18 03:41:41
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salty :
I wouldn't ask this if this wasn't the month for any question - but what do you do about arousal/s*xual urges? I'm disabled and I couldn't move at all for a couple of years, and that part was so hard for me because the urges didn't go away, I just couldn't do anything about them.
2025-05-18 04:27:12
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Amanda :
Again it’s a personal experience but I have a peg feeding tube. Personally I don’t use it much anymore but maintenance is close to zero, just wipe or use gauze. Recovery wasn’t painful either
2025-05-18 16:47:39
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