ALS News Today Forums Forums Living With ALS How Do you Decide What Medical Interventions are Acceptable?

  • Susan

    November 8, 2022 at 7:18 pm

    I have been sick for 2 years, diagnosed last Christmas, what a shock to say the least, very healthy happy 64 year old female, 9 siblings, ancestry back 5 generations, no ALS anywhere but me. At first it didn’t sink in really, of course we cried, but had no idea what my neuromuscular   .specialist had just told us.
    ‘I was already using a Walker, had been for about 3 months because I kept falling due to ALS and breaking bones, I had been dealing with foot drop, causing me to fall a lot.

    we did our best to educate ourselves, very scary, and then seek treatment options, tried the 1st riluzole, bad reaction, then got approved for Radicava via I V, then went on oral solution when it came up. I don’t think the Radicava is working on me, I have progressed quick, so now I will go on the new one just approved by the FDA.
    ‘last Doctor visit filed a POLST, ask your Doctor, I chose no life saving measures, just keep me comfortable, the reason is my fear of being trapped on a ventilator, I have a very strong Catholic upbringing and have all confidence that I will go to heaven.


  • Clint Williams

    November 9, 2022 at 2:56 pm

    This is a great question. I’m sure one size doesn’t fit all. I’ve been diagnosed with bulbar onset for over a year with over 2 years of symptoms. We’re trying all the meds, but I can still sense the progressing symptoms. So far, I’ve only looked at my prior directive and it still seems valid, but times are a changing. I’m watching my step-father goes through the process that awaits me at some point in the future. He’s now in hospice care, not eating or drinking, and the end is near. Most striking is the love and support that surrounds him as he slowly slips away. My new plan is to have a major cardiac event and go quickly, but this is unlikely given the process of ALS. I know I don’t want a trach, but I can hardly speak anyway, so I guess I will wait for lung infection or malnutrition in the end. It’s hard to translate this to legalese, so I plan to speak with my wife, doctors and lawyer in order to document my wishes. Seems like I still might have a couple years, so I remain flexible for now.

  • Patty

    November 22, 2022 at 2:25 pm

    Susan, i am happy to read about your experience with your meds. I was diagnosed feb. 28. But had symptoms prior. I took riluzole for a few months and experienced twitching all over my body, pain in my ankle, that which I hadn’t experienced before.. Also fatigue. I was put on Radicava ORS. I took it for 3 months. After the first week my balance got really bad that I felt I could not stand alone without holding something. I wasn’t sure if it was the meds. Or als progression. I spoke to the pharmacist who said side effects usually happen within 1st week. So I am using a rollator now, where before a cane sufficed. I have fallen several times. Now I am also waiting to see if I can get the Amylyx. Good luck to you. I do want some med to help! I take a couple different vitamins.

  • Elizabeth Pacheco

    November 28, 2022 at 5:44 pm

    When anyone attempts to comfort me by stating that slow progression is better , . Though well meaning, offers me little comfort. Any progression is dangerous and unpredictable with this disease. I fear waking up and not be able to stand on my feet. Knowing full well that it’s just a question of when.. I like many others don’t want to be kept alive by artificial means and want to make decisions that will enable me to keep some quality of life and personal dignity.

    • Amanda

      November 29, 2022 at 10:39 am

      Your comment really hit home today. I was messaging a friend who has ALS and has lost many of their abilities (to walk, eat, ect.) and I worry because I don’t want to sound insensitive or hurtful. I know that this can happen out of sheer ignorance at times. I try to focus on anything positive and encourage pALS to do the same; especially my friends. I think we need to be very careful and choose our words carefully when we are talking to anyone who is facing a disease like ALS. Everybody’s journey is different based on their progress, personal experiences, relationships and faith. There are probably a lot of other factors that impact each of us and how we face illnesses/challenges. The bottom line, in my opinion, is for me to be respectful and empathetic. I try to understand how someone is feeling and thinking, but I also know that is an impossible task since I am not walking in their exact shoes.


  • Alan Larrivee

    November 29, 2022 at 2:18 pm

    Diagnosed only a few months ago. Bulbar. Voice is getting weaker. From a family of ALS, no one lasted more than a few years. I have no illusions about the future. Have a few advance directives. That said I will reserve the right to override myself if it want. Do not think I will but you never know. My faith sustains me. I feel the love and support of my family in this matter.

  • Tim Thurston

    November 29, 2022 at 2:53 pm

    My friend with ALS limb onset is now having increased breathing difficulties, uses TRILOGY at night and some daytime.  Most recent FVC is 57% which prompts the conversation of gastrostomy tube.  He is also losing weight.  He has a lot of difficulty coming to grips with the decision to have a feeding tube, saying he does not now need it, understanding that surgical risks increase greatly with FVC <50%.  As walking becomes more of a challenge, now uses rollator, thoughts of motored devices are not yet pallatable.  The struggle with “giving up” to motorized devices or “tubes” is so difficult.  He already has made the decision for no trach, but these interim decision are the tough ones now.

  • Nina

    November 30, 2022 at 11:56 am

    Thank you for all these thoughts. More of you want to have no interventions than I would have thought. When I see Steve Gleeson with all with all his devices and interventions I think that is not for me, as much as I admire and appreciate him.

    I have a palliative care counselor who has been very helpful on this issue. He is supportive of my preference of having no interventions and agrees it is the best and most natural way to go. He has help me understand what it means to have no interventions. If any of you are using palliative care I suggest discussing it with your counselor there. Very helpful for me. Good luck to all of you and making these very difficult decisions.

  • john hamilton

    November 30, 2022 at 3:03 pm

    Hey, I’m old, 81, and won the bulbar-onset ALS. Soon to get a PEG. Nothing extraordinary, but could help slow my weight loss. Had a good life, but not in any hurry to leave it! Who knows, maybe some miracle cure will suddenly be available; if not, oh well. And, yeah, I take Radicava ORS (free, essentially!). Meanwhile, I use a $20 Boogie Board to communicate with. Works pretty neat, I think.

Log in to reply.