ALS News Today ForumsWhat’s the biggest ALS-related change you’re dealing with right now? – ALS News Today Forums https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/feed/ Fri, 24 May 2024 04:31:48 -0500 http://bbpress.org/?v=2.5.14-6684 en-US https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25412 <![CDATA[What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25412 Tue, 09 Apr 2024 15:41:40 +0000 Dagmar 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!

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25414 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25414 Tue, 09 Apr 2024 16:00:04 +0000 Dagmar 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???) 😉 😉

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25415 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25415 Tue, 09 Apr 2024 19:50:31 +0000 Eric Jensen 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.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25416 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25416 Tue, 09 Apr 2024 21:05:04 +0000 Steve 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.

Steve

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25417 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25417 Tue, 09 Apr 2024 23:20:19 +0000 monka 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.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25423 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25423 Wed, 10 Apr 2024 15:02:04 +0000 Denice 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.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25425 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25425 Thu, 11 Apr 2024 16:32:59 +0000 Amanda 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.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25426 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25426 Fri, 12 Apr 2024 00:45:53 +0000 Danni 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.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25427 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25427 Fri, 12 Apr 2024 01:31:56 +0000 Melody 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.

]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25428 <![CDATA[Reply To: What’s the biggest ALS-related change you’re dealing with right now?]]> https://alsnewstoday.com/forums/forums/topic/whats-the-biggest-als-related-change-youre-dealing-with-right-now/#post-25428 Fri, 12 Apr 2024 22:46:16 +0000 Janet Neckyfarow 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.

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