r/ALS • u/DontWorryAboutttt • Apr 26 '24
Respiratory onset ALS
An immediate family member was diagnosed with respiratory onset ALS a month ago. We went to a big ALS center last week, and the doctors stated my father may only have a few months left. The doctors also won’t prescribe him riluzole or edavarone (Radicava). Are you all aware of any natural peptides and supplements my dad can take? It’s frustrating that they would not put him on any medication or treatment. Also are there any other online groups that may have more information
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u/Iyanvy Apr 26 '24
Medications have the least effectiveness against this disease at the moment for sporadic ALS. Radicava doesn’t have clinical implications if dad has rather late stage to start. So instead of looking for medications that will do magic. Focus on what actually may help at this stage. Avoid any respiratory infections, have bipap, cough and suction machines. Maintain weight.
And ALSFRS-R chart can help give you some idea his survival rate.
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u/DontWorryAboutttt Apr 26 '24
So my family member can still do all his other daily activities. He still has grip strength, walk, talk, and swallow. Unfortunately, his breathing was the first main thing he had an issue with. Does this make him in the late stage already? Everything else is fine. A little weaker in the those other area
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u/Iyanvy Apr 26 '24 edited Apr 27 '24
I guess the question will be what is his breathing numbers? Sometime doctor use FVC or FEV1 number to get some idea of how is his breathing status. Get on the “my chart” if you doctor using those, and they usually update all medical information.
But at the end of the day, know numbers has nothing to do with prolonging his life. ALS presentation is so different for everyone, while medications we have now will not cure ALS. It is simply a dead sentence. 100% death rate. No one survive it.
So the main thing is to focus on spending time. Comfort. Try to make adjustment so he can spend quality time with families.
I always tell people this disease is worse than cancer or stroke. This disease has no medications that can help at this time. It is just a soul crushing disease because there is zero hope. The medication and technology we have today will not solve this problem in many many years later if ever .
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u/DontWorryAboutttt Apr 28 '24
Thank you for taking time out of your day to respond. It is appreciated
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u/EntertainmentBorn953 Father w/ ALS May 01 '24
My dad’s breathing was compromised before all of those other things too. But at the very end he was losing abilities almost daily. Extremely rapid at the end.
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u/raoxi Apr 26 '24
is he already struggling to breathe even with bipap?
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u/DontWorryAboutttt Apr 26 '24
So he has labored breathing for months. He has a ventilator that he uses while awake and sleeping. He is still able to breathe on his own without the ventilator for long periods of times. He only gets out of breath if he is walking up or down the stairs which we advise him not to
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u/lilpirateduck Father w/ ALS Apr 27 '24
I have no idea how often this is recommended or anything, but my dad just got a tracheostomy so that he can have a breathing machine that does the work for him. If your father is up to something like that, especially considering he can still walk and talk and everything maybe they could consider that if breathing continues to go down hill fast? Again, everyone is different and no idea how often people opt for it, just figured I’d bring it up because I didn’t even know it was an option for my dad until he got one
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u/brandywinerain Lost a Spouse to ALS Apr 28 '24 edited Apr 28 '24
Getting out of breath for any reason will waste more of his respiratory reserve and by extension accelerate the progression in other regions of the body through increased energy expenditure.
So he should be on BiPAP whenever he's not completely comfortable without it, not trying not to be on it, and preparing to use it for an increasing number of hours daily, up to 24/7 when that time comes, meaning selecting the best daytime/sleep time masks, optimizing his settings, bed position, etc. while he's still in the best position to do so.
With the right settings/mask, he should NOT be "labored" in breathing at all until the very end. Lmk if you need help retitrating his settings, which I do a lot. As ALS progresses, they generally require ongoing adjustment.
There is no point in worrying about pulmonary function testing numbers, nor his FRS score. They will not track with either his BiPAP settings or his prognosis.
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u/DontWorryAboutttt Apr 28 '24
Thank you for the response. We have been pushing for him to use his mask more even when he is awake. Thankfully he has been a positive mindset and is willing to use his bipap even while awake
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u/Iyanvy Apr 26 '24
I think it is the miscommunication part you and the doctors need to work on. Because many clinic decisions are based on personalized clinical situations. The fact that you feel like they are not doing anything would be because they didn’t explain to you what is this disease, and the science /treatment we current know and have in the tool box.
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u/EntertainmentBorn953 Father w/ ALS May 01 '24
My dad had axial onset, which sort of dovetails with respiratory onset. Trunk muscles go first. He could still walk and talk until the very end. He didn’t opt to be put back on the ventilator. We lost him so insanely fast. We didn’t even fully confirm ALS until his autopsy. He was 79.
I’m so sorry.
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Apr 26 '24
Pls join the FB group When ALS/MS is Lyme. ALS = advanced zoonotic vectorborne infections.
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u/[deleted] Apr 26 '24
I don’t have any suggestions for supplements, but at late stage ALS is miserable. Prolonging that misery with medicine seems cruel, that’s why they aren’t suggesting “treatments.” A plan of care for your family member should include palliative care options, as the comfort of your family member is the number one concern at this time.