ALS News Today Forums Forums Living With ALS What’s the biggest ALS-related change you’re dealing with right now?

  • What’s the biggest ALS-related change you’re dealing with right now?

    Posted by Dagmar on April 9, 2024 at 10:41 am

    ALS brings so many changes to our lives, no matter if you are newly diagnosed or have been living with it for years. It’s everything from learning to move slowly, and having breathing difficulties, to navigating the healthcare system – – it can be frustrating and a challenge. 

    What’s the biggest ALS-related change you’re dealing with right now?

    You might not be the only one!

    Patricia Koopmans replied 2 weeks, 5 days ago 18 Members · 23 Replies
  • 23 Replies
  • Dagmar

    April 9, 2024 at 11:00 am

    Over the past decade, I’ve had to deal with many ALS-related changes in my body. But right now, I’m feeling more fatigued in the afternoon than before. Is it from ALS or part of the aging process? I don’t know. But, I have found that 5-min. of sitting-breathing-focusing-on-nothing resets my brain and energy. …. maybe there’s just too much social media and weird events happening nowadays – – that whoops me out. (ya think???) 😉 😉

  • Eric Jensen

    April 9, 2024 at 2:50 pm

    Hand weakness. I didn’t notice because I would just adapt to whatever my hands wouldn’t do. Almost in denial. Now, I wish I would have done hand strengthening this whole time. The inability to use my hands is up there with people not understanding my speech.

  • Steve

    April 9, 2024 at 4:05 pm

    The intermittent weakness that comes and goes with ALS. I have in the past had this weakness only when taking the Radicava ORS. But lately the weak days can come at any time. Once I have a weak day, let’s say 50% of normal, it takes me 3-4 days to recover.


    • MillieB

      April 25, 2024 at 3:49 pm

      Interesting that you say you only use to experience weakness when you were taking Radicava. I have been experiencing weak days for a few months now And like you they can take 2 or 3 days to recover from.

      I have just started taking radicals and am really hoping I do not experience these days more frequently.

  • monka

    April 9, 2024 at 6:20 pm

    I have to say that speech and excess saliva are what mostly puts me over the edge. In the 5 years of being diagnosed and 8 years being symptomatic I have to say l that those 2 things have been the hardest to accept.

  • Denice

    April 10, 2024 at 10:02 am

    I was diagnosed with ALS 8/23.

    I’m feeling more weakness in my left leg and left hand. I’m seeing the muscle loss in both hands. It really freaks me out. Still living a good life.

  • Amanda

    April 11, 2024 at 11:32 am

    For me it was having severe pain and cramps starting at least a decade before I was diagnosed. They came on slowly and I saw specialist after specialist. There were no answers from anyone.

    I know that prodromal stage in ALS is recognized, however, the symptoms characterizing this phase are not definitive. There is no checklist to determine if it is ALS related or not until after the fact. And then, we know that each genetic mutation can manifest differently adds to the difficulty of knowing is it related or not. Not only the differences caused by genetic mutations make it a challenge, but each case, sporadic or familial, manifest differently too! Although I have been diagnosed and have been on medication (baclofen, QALSody, Riluzole) none of them seem to make it stop. Lately it seems that they are not as frequent or as intense as they were a year ago. These cramps and spasms get so painful that I’ve had days where I have curled up in the fetal position on the couch and cry for over an hour until the cramps releases. Ugh! I can handle it, and I will handle it 🙂 The other thing that has been challenging at times is being breathless so quickly. I often taught classes to adults in the school district. Now, although I do occasionally teach, my partner teacher typically does most of the talking during the 6 hour training. With all of that being said, I am grateful for still being able to work and be independent. I find something to enjoy and appreciate every day and this helps me a great deal.

  • Danni

    April 11, 2024 at 7:45 pm

    I have bulbar onset so after becoming nonverbal, managing secretions has been challenging. I take Robinul at bedtime and Atropine 1% sublingual daily to manage drooling. But then secretions become thick and difficult to get out without cough assist and frequent suctioning. Extreme fatigue and a feeling of being lightheaded most of the time is also challenging. Along with this is increasing unsteadiness on my feet and a staggering gait which started in recent weeks.

  • Melody

    April 11, 2024 at 8:31 pm

    The biggest challenge for me currently, is learning to adjust to the changes in my voice. I am engaged in speech therapy weekly and the therapist is awesome. Some days are better than others.

    My voice has been my living.

    Now I must adapt to an entirely new way of thinking about how I use my breath, when I pause, how to take my time and how to relax.

    I’m learning to trust even when it feels so strange.

    • MillieB

      April 25, 2024 at 3:42 pm

      Im with you Melody, my voice started to become affected just over a month ago and this is really hard for me to accept. I am a talker and now I find just having a 10 minute conversation can tire me out.

  • Janet Neckyfarow

    April 12, 2024 at 5:46 pm

    As a linguist and singer, losing my voice was really difficult. I get my nutrition, medicine, and hydration through the feeding tube. Something else to get used to. Complete loss of my left hand and arm made things I loved to do impossible.. quilting, playing the guitar, cooking, etc. I have learned to adapt through all of this.. because I was still mobile, line dancing, and doing tai chi and aerobics at the Y. For a while I even played one handed golf and one handed miniature golf! I even managed to embroider some on my Christmas tree skirt two years in a row. And I am still cutting my hair and my husband’s hair. My legs are getting weaker. But the only thing I haven’t figured out yet is how to walk or do much of anything with my chin touching my chest. Going to PT, being fitted for a heads up device, and going for a wheelchair evaluation . I know it’s going to get a lot worse, but I sure would love to use my legs more while they still work! We’ve actually bought a transporter wheelchair so I can enjoy going for “walks” again.. with someone pushing me. Staying positive is the answer to everything.. but at times it just gets really hard.

  • Richard L Wheeler

    April 24, 2024 at 2:53 pm

    In the past year now have lost muscle in strength in right arm. Noticeable muscle loss as well. Hurts to pick-up weight that was easy before.

    I am scared of what comes next.

  • MillieB

    April 25, 2024 at 3:38 pm

    Fatigue. More days than not The smallest of things can make me absolutely exhausted, getting dressed, cooking dinner, even talking can tire me out. When I am exhausted it takes 2 or 3 days to recover and then bam…,I’m exhausted again.

  • Debby

    April 25, 2024 at 4:14 pm

    For me, its absolutely noticing weakness all of a sudden. And hand strength going weak. Very frustrating. Makes me glad I got the tobii dynavox now so I can get used to it. And having difficulty even with soup lately – I’m chewing on my cheek some times ugh!!

  • Debby

    April 25, 2024 at 4:22 pm

    And yes, agree with Millie – tiredness. Is..tiring! I hate that my husband drives me to store and I’m exhausted after. I really hate I had to give up my car also just don’t feel comfortable driving anymore

  • Charles Sutherland & Doris Sutherland (caregiver)

    April 25, 2024 at 4:54 pm

    I just asked Charles what is the most challenging ALS symptom right now. He said it’s his speech and I agree with him. All of a sudden his ability to speak plummeted. It’s been very difficult for him to communicate at times. He has the Tobii Dynovax. It’s getting to the point where he may have no choice but to use it.

  • Roman

    April 25, 2024 at 7:45 pm

    Excess of saliva and phlegms, recently I have to use 3 to 5 times a day the cough machine if I want to breathe. Really is horrible

  • Timmy

    April 26, 2024 at 7:28 am

    It’s hard to figure out the changes and things that are happening in the course of my life. I don’t know if it’s my age or the disease. If it’s all the dumb stuff I did when I was younger or is it the environment I grew up in. You can ask and ask questions and get different answers from every person.

    Our bodies are just so complexed to begin with. If you just look the neurological aspect, that has to be the most challenging. I am so thankful for the help and care I have received. I’m even thankful for all the different diagnosis offered (right or wrong), the treatments that didn’t work but at the time gave me the hope I needed.

    Everything I’ve experienced has taught me to keep a positive mind. To hope and to understand what’s really important in life, Family, Friends and the higher power that watches over us. We must Believe!

    Believe we will hear the words “Researchers have found a cure for….”

  • Emee

    April 26, 2024 at 7:50 am

    I just got a feeding tube, I miss eating as a social activity, and I miss tasting all the wonderful foods I’ve always loved.

    • Debby

      May 1, 2024 at 3:02 pm

      I have been blessed to hold off on that but cant do anything except creamy soups and smoothies very well blended. I , too, miss “real food”. Last month was honored by the local Masonic Lodge and had to sit there and watch as others ate shrimp, chicken french, and pizza – so hard! and when my husband has a burger – ohhhh

      • Dagmar

        May 1, 2024 at 5:03 pm

        Debby, I feel for you. But my situation is a little different… I can’t deal with thin liquids. So, I miss drinking normal (unthickened) drinks – – coffee, ice tea, beer. Even ice cream has been off my list for the past 6 years. Oh boy, I sure do miss the ice cream!

  • Beth Gabel

    May 4, 2024 at 12:18 pm

    Having ALS is so hard on us in every aspect of our lives but it doesn’t stop other health conditions which are complicated by ALS. Recently my appendix ruptured and was septic then developed an abscess. I’m able to transfer independently and use the bathroom independently normally. In the hospital I had to be lifted and couldn’t use the bathroom by myself. Couldn’t reposition myself in bed. Pain and weakness was unbearable. It made recovery much longer and more difficult. I was in the hospital twice for a total of 10 days. We weren’t prepared for my husband to have to lift me or shower me or help on the toilet. I had to use the bedside commode because it was easier than getting to the toilet where I have a bidet. I honestly thought I was going to die. Then I felt I would never regain my strength. Then we all had to deal with the emotional aspect of the added stress. Unfortunately we get no reprieve from the “normal ” life of illnesses. As if having ALS isn’t bad enough.

  • Patricia Koopmans

    May 4, 2024 at 7:38 pm

    Hello all! I’m asking a question in this thread. Do any of you experience incontinence or have scalp issues? I developed early on and have recurrent bouts of psoriasis on my head. I treat it topically but when I checked google it seems to be yet another issue for us. On the incontinence issue, I think my nerves are failing me there as well. Just wondering if anyone else has these issues. I’m about 18 months since diagnosis.

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