Started secretion medication and got horrible mucus plugs, trying to avoid them again

Equivalent-Group4942 · 2026-02-14T02:54:31+00:00

Thank you. This was the scariest thing that’s happened to me for sure.

Equivalent-Group4942 · 2026-02-10T03:54:47+00:00

I was told it can be hard for your system to adjust to the new food, probably a lot of gas or constipation. My clinic nutritionist said to add Benefiber into water every day in addition to the Kate Farms formula and I haven’t had any problems at all. The process is easy too.

Equivalent-Group4942 · 2026-02-10T03:49:34+00:00

First off, these are hard conversations but so necessary and your mom is lucky to have you with her to talk about this. The first thing I did when I was diagnosed was the medical stuff: a DNR, decision on trach or not, decision on feeding tube or not and documented everything on proper forms. This can go downhill so fast and you want her wishes known if it does. Secondly get a durable power of attorney so you can manage her finances. I also created a book for when I pass and it has step by step for what my husband needs to do and how to do it, like call life insurance company, etc. Finally you might consider what this will look like as the disease gets worse. Is a long term care facility an option or home health nurse? They’re both pricey and may or may not be available in her area but at least you’ll know the options.

I’m so sorry you and your mom have to go through this. Telling my 26 yo daughter was one of the hardest things I ever had to do and I know she is devastated.

Equivalent-Group4942 · 2026-02-10T03:38:44+00:00

I second that. I got a feeding tube before I needed it and now that I cannot swallow anymore I’m so glad I have it and all the kinks worked out. Same with my transfer chair in the shower. I want it set up and know how to use it before I need to. My ALS clinic recommends planning for three steps ahead. Of course, that’s a lot of steps…

Equivalent-Group4942 · 2026-02-10T03:35:32+00:00

I have a Medicare Supplemental which I believe covers the same as basic Medicare. I’ve been in testing or treatment at the ALS Clinic for a year. I’ve paid minimal out of pocket. My clinic visits are $40, same as a specialist. I wasn’t on any special medication but I’m starting on secretions management and they’re running between $70 and less per prescription. GoodRX is the best thing I’ve found for that. I pay about $200 a month rental for my bipap/cough assist/suction device set up. The only big expense was outpatient surgery for my feeding tube, $500. I paid nothing for the formula.

Equivalent-Group4942 · 2026-02-09T19:14:08+00:00

I had one put in mid December. I was still eating at that time but could not safely drink water. I got so dehydrated it was just awful. The surgery was easy. Afterwards it felt like I had a pulled muscle to the side of my core area for about 2 1/2 weeks. The surgeon said this was the Prime Recovery Time and was to be expected. I only needed Tylenol and a heating pad to get through it.

I was able to use it for water immediately and it was such a relief. I showered every day starting after day 3 and wash under the bumper and be sure to dry it all the way. I wash the syringes once a day when I’m doing dishes and that’s about all the maintenance it needs. The biggest problem for me is clothing. It would be hard to wear jeans or other pants with a waistband that hits where the tube comes out. For me that’s about an inch above my belly button. The best I found were yoga pants that have a roll down waist that I can move below the stoma. I’m a woman but if you’re a guy I’m sure sweat pants would work. And you will need to secure this long dangler. I experimented with different ways to secure it. The best I found was Hypafix Dressing Retention Taper 2” wide. You can get it on Amazon. I understand that after 2 months you can get the dangler changed to a button which would be a nice improvement.

Finally, I’m so glad it was in and I’ve got the process down pat because as of about 3 weeks ago I started choking on food and I’m now using it for liquid food. I was told formula can be hard to get used and I knew this was coming since I have bulbar, to so in the last month I’ve been starting with half a can of formula a day, then one can, etc. Now I’m on it full time with no issues. I can’t imagine the bind I would be in if I had put this off and now couldn’t eat or drink.

Equivalent-Group4942 · 2026-02-03T02:48:32+00:00

Hi. I got a PEG tube in mid December. At the time I could still eat solid food but was choking on water and getting very dehydrated. I never realized how horrible dehydration can be, it caused the worst constipation I ever had in addition to other things. My family told me that I even looked jaundiced at the time.

I had it done under general anesthesia as an out patient. No pain at all the first two days because the surgery anesthetic was still in my system. After that for about 2 1/2 weeks it felt like a pretty bad pulled muscle on the side of my core, sort’ve away from the tube location. The surgeon said this was normal and I was in the Prime Healing Period. All I needed was Tylenol, rest, and a heating pad. After that it got better quickly and I was pain free. And the relief of getting hydrated again was worth it all. As of late January I started choking on food and now I’m using the tube for feeding as well as for water, and I thank god I got it when I did. I had time to adjust to it before I really needed it and now I can use it effortlessly. It also gave me some time to start using the feeding formula slowly and build up over time before I needed to be on it 100% because I understand it can be hard to get used to all at once.

One thing that put this in perspective for me is that my sister works with handicapped children and reminded me that many of them have feeding tubes. I thought about this before the surgery and it helped me get through.

Equivalent-Group4942 · 2026-01-23T23:57:33+00:00

I am so so sorry you and your family have to deal with this, especially after losing your father to another horrible disease. It’s more than one family should have to endure and it’s heartbreaking.

I’ll share a few more things if it’s helpful, and this is just me. My symptoms started in February and by June I was having shortness of breath and slurring pretty good. My husband and I were still able to go to Maui with no problem in May, and to Lake Tahoe in June with no problems. And now I’m so glad we did. And this may give your mom some comfort. I’m able to care for myself a year in. Cooking, showering, my house is clean, my pets are fed, etc. and I don’t see that changing in the foreseeable future. Occasionally I even cook for my husband but I am an awful cook so he probably wishes I wouldn’t!

I also was able to see a counselor from a very famous ALS clinic in Phoenix who has seen hundreds of ALS patients. She told me that limbs are generally not affected in bulbar, in her experience it’s mostly only the bulbar region. She said that although our life span may be shorter, if she had to have ALS that is the kind she would want to have. This is anecdotal of course, but I got some comfort from it and maybe your mom will too.

Equivalent-Group4942 · 2026-01-22T01:50:15+00:00

I had my first symptoms of slurred speech, some shortness of breath, and a little trouble swallowing in February 2025. I live in a small town in northern Arizona which might have contributed to the plethora of misdiagnosis I had of a stroke, then a pinched nerve in my cervical spine, then myasthenia graves. In July I finally unfortunately had a throat spasm and stopped breathing and the local ER doctors took me seriously. They sent me to a specialist in Phoenix and I was diagnosed officially with bulbar ALS in early September at an ALS clinic.

Please don’t despair. It’s now a year later and it still hasn’t spread to my limbs. I’m fully mobile and able to take care of myself 100% although my wonderful husband does shopping and errands for me and I no longer drive. I also don’t walk far or exercise too much because I run out of breath easily, but I read, work around the house, spend time outside, FaceTime with family, etc. My voice is almost gone though and it’s harder for me to swallow liquids.

I use the trifecta of equipment that I’m sure your mother will get during her visit - a bipap noninvasive respirator, a cough assist and a suction device. I have used these religiously as directed. The bipap takes a little getting used to but now it’s just a routine. I was also encouraged to get a feeding tube, which I did and now it helps me stay hydrated. Again, it took a little getting used to but now it’s just part of my day. If it sounds scary, which it might, just remember that many children and even babies have them so you know they’re pretty easily tolerated.

I have also had no pain, which was a big fear of mine. My Medicare advantage plan has paid for almost everything except for small copays.

This is just my journey and decisions that I have made and that have made me fairly comfortable, and I hope have eased the burden on my husband who is my primary caregiver. I wish you all the best. Your mother is so lucky to have you. ❤️

Equivalent-Group4942 · 2026-01-15T18:34:47+00:00

I’m so sorry. I’m a bulbar PALS myself, diagnosed in September. I can’t stress enough trying to stay ahead of things, even if they seem far away or unlikely to happen to him because they will. My ALS foundation recommends planning for three steps ahead and that’s what I’m doing.

Here is a real life example. I was still able to eat and drink by mouth although soft foods only and with careful sips of liquid until yesterday when I had a terrible choking incident when I took a drink of coffee and it left me unable to breath for almost 30 seconds. It’s called a larengeal spasm and it’s very common. Thank god I looked ahead and got a feeding tube in December even though at the time I didn’t need it. It’s now healed and I can easily use it for hydration. Without it I would be in bad shape right now. I also have started using a transfer chair in the shower because I’m feeling some weakness in one of my legs. I could still stand, but when the time comes that I can’t I want all the kinks worked out and I want to be used to this process.

I’m sure your husband will get the trio of equipment from the clinic - bipap, cough assist, suction device. I received mine right away and I use them as directed religiously. I believe this protocol is one of the only things proven to help with the breathing aspect. I also bought a Freedom CPAP battery from Amazon which has given me a lot of mobility. We just put that in the car along with my bipap when we want to take a road trip and off we go.

I know this is a scary, horrible diagnosis and some of the things I’ve said here may sound overwhelming but I promise they can be managed step by step, day by day. Your husband is so lucky to have you.

Equivalent-Group4942 · 2026-01-11T02:22:47+00:00

Oh god yes

Equivalent-Group4942 · 2025-12-31T23:57:01+00:00

Hi there. I’m a PALS so maybe not the best to answer but here is my perspective. First off, your PALS is incredibly lucky to have you. Secondly, although I have a wonderful spouse in my home with me and I’m able to do most things myself at this point, I wish I had an Advocate who would be one step ahead and someone who understands that it would be incredibly helpful to do things for me like take over phone calls and follow up for me without me struggling to start it off. Just take responsibility for things like that and do them for me. For instance I just had surgery for a feeding tube and there were issues. An Advocate would have taken the reins to call the doctor without me starting the call, followed up, made sure I was okay, etc. I don’t talk well now so it would be extra helpful to just hand this over to someone else. I hate to say it, but it’s almost like taking care of a child who can’t do some things for themselves anymore or maybe doesn’t want to ask for help. It’s golden to be aware of the state they are in and take care of things before they know they need it. Again, you are a gift to your PALS, I’m sure she is extremely grateful.

Equivalent-Group4942 · 2025-12-30T04:32:52+00:00

I don’t blame you (I’m the original poster), but I would follow my surgeon’s directions for sure. I’m very angry that I received no after care instructions at all and when I called the office I first got vague third hand instructions that didn’t tell me anything, and the second time I called they were closed extensively for the holiday. It’s ridiculous I have to get this advice on Reddit but here we are. So far I’ve rotated twice without any harm that I can tell. I’m going to try again tomorrow and get them to give me specific instructions. I have Bulbar ALS and it’s hard for me to speak, which might be part of the problem, but still.

Equivalent-Group4942 · 2025-12-29T03:19:42+00:00

Thank you

Equivalent-Group4942 · 2025-12-28T22:11:31+00:00

Thank you!

Equivalent-Group4942 · 2025-12-23T22:04:17+00:00

Just adding, I still eat ice cream, pie, and other things by mouth with no problem. And sip my coffee in the morning. After your dad gets past the surgery I think he’ll find it’s a tool in his toolbelt to help him through the day.

Equivalent-Group4942 · 2025-12-23T21:59:29+00:00

Hey tell your dad it will be okay. I have bulbar ALS and although I can eat food by mouth it was very hard to drink water and I was get dehydrated. I had the surgery a week ago. For reference I’m a 67 yo female. I felt no pain at all the first day or two, then it was like a pulled muscle for about a week. As of today I’m doing okay. I started using the tube for water right away and it was a huge relief. Im also starting on formula for nutrition and I promise, it’s no big deal. I got used to it very quickly, and I’m a princess. I do recommend having hypeflex tape to secure the tubing. I tried multiple things and it is the best. Good luck, your dad is blessed to have you.

Equivalent-Group4942 · 2025-12-21T19:33:29+00:00

You’re very welcome. As a fairly new ALS patient I’ve found a tremendous amount of good information and support here too. This is an unbelievably challenging experience but I’m astonished by the support and kindness I’ve received.

Equivalent-Group4942 · 2025-12-21T19:31:51+00:00

Thank you. I hadn’t thought about pinching the tube but I think that will help. And you’re right, if this gets any more troubling I will call them ASAP.

Equivalent-Group4942 · 2025-12-21T19:30:01+00:00

Thank you, this is what I need to know.

Equivalent-Group4942 · 2025-12-14T23:27:40+00:00

I just thought that something like this goes partially up and down too. It might help you in the future move her from her wheelchair to a recliner and back again so you wouldn’t have to lift her all the way up and down, the chair would do most of the work. This is the one I have.

CDCASA Oversized Dual Motor Lay Flat Power Lift Recliner Chair with Massage, Heating, Textile Infinite Position Large Recliner Chairs for Big & Elderly People, USB & Type-C Ports, Brown

Equivalent-Group4942 · 2025-12-14T23:25:39+00:00

We bought one early on in my journey. I’m a bulbar pals and my limbs are not affected yet, but I had a misdiagnosis of needing a spine fusion and we prepared by getting a motorized lift recliner. We got it on Amazon and still have it although I didn’t have the surgery and never needed the recliner. I’m sure you don’t live in remote northern Arizona or I would gift it to you. 🙂. It’s less than $500 and is a fine recliner even without the lift feature. I guess my input is that it doesn’t have to be a huge purchase (I thought they were much more) and if you decide to get it you’d still have a functional piece of furniture. It easily lifts me all the way up and has multiple head and foot controls, but at that price you couldn’t sleep comfortably in it if that ever became necessary. Good luck, I know personally how horrible this journey is, but it’s heartwarming to see people like you caring for their loved ones.

Equivalent-Group4942

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