r/ALS

Hello everyone,
My dad is scheduled to have a PEG tube placed next week. He finally agreed to it after going through a very severe chest infection caused by repeatedly choking on food and water.
The infection became so severe that he lost consciousness and was in a coma for few hours. The doctors were concerned that he could develop sepsis, and after everything he went through, they were genuinely surprised that he survived. Honestly, I feel like it was a miracle.
Before this happened, I had been trying to convince him to get a PEG tube, but he kept refusing. After this experience, he realized it was the only safe option.
My question is for those who have experience with ALS: after getting a PEG tube, is it possible for someone who has lost a lot of weight to regain some of it? He has become very thin because of the infection and the difficulty eating. Assuming everything goes well and he’s stable after the procedure, were you or your loved one able to regain weight or at least maintain a healthier weight with PEG feeding?
Also, if you have any advice about preparing for the PEG procedure or caring for it afterward, I would be incredibly grateful. We live in Tunisia, where ALS is unfortunately not very common, and many healthcare providers have limited experience managing the disease. Any tips, recommendations, or things you wish you had known before or after the procedure would mean a lot to us.
P.S. I have to admit I’m feeling quite anxious about the procedure. My dad only recently survived a life-threatening infection, so it’s hard not to worry, even though both his doctor and the anesthesiologist have reassured us that he is fit for the PEG.

Thank you so much for taking the time to read this and for sharing your experiences.

Hi guys hope everyone is doing okay . My dad has had als for many years , he is on a ventilator now with a trach . All of this was done last month , since then he is in so much pain . Not the trach or his lungs , it’s his whole body now . All day we massage and stretch his legs, arms , wrist , head , his elbows are hurting , we adjust him so often bc no matter how many pillows we put under him it doesn’t help . Before our trip to the hospital he wasn’t in pain , he very seldomly took pain medicaton. Now he has hydrocodone and Dilaudid , which doesn’t seem to be helping that much . So i can’t wrap my head around what happened in the past month. He is also having panic attacks several times a day even on his Lorazepam. He’s vitals are good but I’m worried this is the beginning of the end :( . Has anyone had this experience?

So today when me and my dad were talking with my mum, and she was saying no for something, her head movement was a bit unusual. Like how someone would give a single nod from left to right for a No. she did that for 10-15 seconds straight. We noticed it for the first time and found it very unusual since she has never done this before. This happened twice today. When even when the conversation ended, she kept moving her head from left to right for a few seconds. We stopped it by hand both the times. On asking if she was doing that or involuntarily, she didn’t say anything. Is this something that ALS patients go through or something different?

Hi! I’m recently diagnosed with ALS4 with dominant SETX mutation. Looking for anyone else with it, I know it’s a really rare type but looking for others out there

My mom has ALS and is currently on hospice. Yesterday she began VSED (voluntarily stopping eating and drinking), which was her decision after a long and difficult journey with this disease (going on 6 years). Of note, does not use any assistive devices, such as feeding tube, bipap, etc. She has refused those throughout her entire journey.

This past Monday, the hospice nurses increased her medications to 2 mg of hydromorphone and 2 mg of lorazepam every 4 hours. Last night into this morning, we noticed her breathing becoming more labored, so under hospice guidance we've increased it to 4 mg of hydromorphone and 2 mg of lorazepam every 2 hours.

One of her biggest wishes has always been to be kept asleep and comfortable so she can pass away peacefully. She is definitely sleeping much more than she was before, but what has been difficult is that when she does wake up, usually every 2 hours when we need to administer meds, she's often very confused and hallucinating. She'll ask me questions that don't make sense and often believes she's doing something that isn't the case (such as envisioning herself preparing me dinner). When I respond to her, she knows who I am and is conversational, though still often hallucinating. The hallucinations have increased over the past few days, and she has become less and less in touch with reality.

I'm really struggling with this because I don't want her to be in any distress. Every time she wakes up and starts talking, even if she's mostly hallucinating, I become anxious that we're somehow not doing enough to honor her wishes to remain asleep and comfortable. I keep wondering if she's suffering or aware of what's happening.

I guess my questions are:

• Is it normal for someone to still have periods of wakefulness even with these medications?
• Why might the medications not keep her asleep continuously?
• For those who have cared for someone with ALS or been through the end-of-life process with hospice, what was your experience like in the final days? Was confusion or hallucinating common? And, how long did this period last?

I know everyone's experience is different, but hearing from others who have been through this would really help. More than anything, I just want to make sure she's comfortable, not in pain, and that we're honoring the peaceful passing she wanted.

Thank you to anyone willing to share your experience or offer some reassurance.

Are my feelings valid? ADVICEE PLEASE

My dad got diagnosed last year. I have an older brother, and I have 2 young kids. When my dad got diagnosed I had to drop out of my dream school program and move back in along with my brother.

Off the bat my dad said he didn’t want to be a bother and a drag in our lives. We told him he isn’t. Over the last few months I’ve asked him how he views his future. The interventions he would want or not want.

He just shrugs it off and says “I don’t know”. I try to give him time to think & ask again after a few months but he just doesn’t. And when he does give me an answer it’s that he wants NO intervention. Well today after the ALS appointment he decided he did want a feeding tube.

While I’m not frustrated over his decision to get a feeding tube, I’m frustrated that he doesn’t warn us or talks to us about how he views his future. I’m frustrated because I want to plan MY future. I still want to have more kids, go back to school, buy a house. I just want to PLAN! Even plan for my dad. How to help him, what to expect.

I understand people can change their mind but how can I go about this? Has anyone experienced this? He avoids all serious conversation and just says “I don’t know” or gives answers that he clearly doesn’t mean (aka says he doesn’t want feeding tube but is now scheduled to get one).

I just feel so lost of control. I don’t think he understands that while this is 100% happening to him. Everything that is happening to him is happening to US as well. And I feel like I deserve to know what to expect. Anyone have any advice? ):

Feeling so frustrated.

Hi-

Have any of your or your loved ones visited either or all of these hospitals for your diagnoses and/or second options. Do you get care at either of these places? trying to compare! Please feel free to send a private message if you dont feel comfortable sharing your opinion publicly, Thanks.

Please delete if not allowed. My husband was diagnosed with ALS based off an EMG in November. They did the elimination tests and came back to confirm the diagnosis in December.

We then went to an ALS clinic where the doctor stated he was not sure it was ALS and wanted to run through genetic testing and do a repeat EMG before confirming the diagnosis. After 7 months of testing, ruling out all genetic neuropathies, muscular dystrophy’s and axonopathy, the doctor told us that he could state within a 95-96% accuracy that it is ALS or some form of MND.

Today we went in for our evaluation for the Coya 302 trial and a third (new doctor at the same clinic) is now saying she does not feel certain he has ALS (after doing a 5 min exam and reviewing his test results) and wants to perform a muscle biopsy. He previously had a spinal tap and bloodwork on his CK levels in lieu of the biopsy. I’m feeling a little lost since he’s now been diagnosed twice with ALS, but each time we see a new doctor they’re asking for further testing (I know this is a good thing and we of course want to test for any/all possibilities). They said don’t get false hope because he still may have a form of MND that’s terminal but just not “traditional” ALS.

They said once the muscle biopsy is complete we should take everything and go to Mayo Clinic. Just wondering if anyone else was experiencing this back and forth on diagnosis. Did you have to get a 3rd or 4th opinion for your diagnosis?

I know it’s hard to diagnose and there is no definitive test, I just can’t tell if we’re just set up with bad doctors/having a particularly bad experience?

my 63 year old father just got diagnosed with ALS today. it's 4am, i can't sleep, i don't know what to do or think. i just keep crying. my mom wants a second opinion, and everyone says to have hope, but i knew he was dying before he was even diagnosed. i feel like i spoke it into existence and i jinxed it somehow. i know that's probably not the case but i feel so guilty. i don't even know what to do right now.

Already purchased a wedge pillow on amazon, i’m just wondering for any recommendations?

My mom passed from ALS when I was 3, she was only 27 years old. Obviously I don’t remember her time in the hospital but I’m guessing she must have been diagnosed around 25-26. Nobody one else on my mother’s side of the family has had ALS, (her grandparents, parents, and siblings.) I’m just so confused on how sporadic ALS works. What are the odds she had a de novo gene mutation? What are the odds I might have inherited it? Since my mom is such a rare case getting diagnosed so young. Im thinking I should get a referral to a genetic counselor to understand better. I’m 23 now and as I get closer to my mom’s age this has been on my mind more. Thank you for reading, any advice is appreciated

Today, I lost my mother-in-law after 3 years with ALS. The mother who raised my beautiful partner, who shares so many of her traits.
I am so grateful for the moments I was able to share with her. And I will continue to care for her son the way she cared for him.
What a beautiful soul that the world will have to miss out on from now on.

Fuck ALS. What a horrible disease.

My husband is at the stage where he will soon need a wheelchair. Thankfully, he still has quite a bit of overall mobility at this time, but we are looking for some recommendations on an electric wheelchair. This would mostly just be to use when we need to walk longer distances, etc. Just looking for something fairly simple, lightweight and compact that can handle gravel. I have found some decent looking ones on Amazon, but the reviews are all fake or paid and I don't trust them. Any recommendations are appreciated!

Hi friends! This company is trying to make eye-tracking/assistive tech devices affordable: www.babatech.io

Full disclaimer: I know the people who started it personally and they're very open to feedback. Tried the demo and it's pretty cool what they're trying to do

Chris Johnson, nfl player has been diagnosed with aggressive ALS.Man that's a terrible disease. Im child less but if i had a son,I wouldn't put pressure on him to play football. That sport causes so much hits to the head and issues with health and brain. So many parents want to turn their son into NFL kids but we gotta look at the cons. This is sad.

Hello, I’m really struggling to find adequate adaptive products for upper limb disabilities. My ALS started in my left arm and has now moved to my right and dominant hand really quickly. I’m really struggling to adapt. Although I’m primarily given up make up, I’m still clinging to my mascara and other eye products. I do get lash tints and lifts, but that can’t go on forever. Please give any suggestions for any and all beauty products or hygiene products that have been effective for you.

how does a pALS know when it is time? Can anyone share experiences with choosing *when* to use MAID?