Dagmar
Forum Replies Created
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At first, I noticed all the negatives. For instance, it was intrusive; it was (I believed) the first thing people noticed when I entered a room. It showed up in photographs, and when hugging a friend my rollator became a third party in the entanglement.
But when out and about, I learned my rollator was actually a helpful visual “alert” to others not to bump into me. It also acted as a safety barrier, saving me from wayward children running past.
I wrote a blog post about additional ways my rollator helps me: https://alsandwellness.blogspot.com/2020/08/learning-to-roll-through-life-with-my.html
alsandwellness.blogspot.com
Learning to Roll Through Life with My Rollator
Learning to Roll Through Life with My Rollator
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ALS News Today published the Top 10 ALS news stories of 2025 — do you have any favorites? (mine is #3).
https://alsnewstoday.com/news/top-10-als-news-stories-2025/
No. 10 – Qalsody halts disease progression in SOD1-ALS patients
No. 9 – Researcher advocates rethinking ALS treatment strategies
No. 8 – Blood test could diagnose ALS up to 10 years before symptom onset
No. 7 – NP001 data show nearly two-year survival benefit in patient subset
No. 6 – Repurposed veterinary medication prolongs survival in patients
No. 5 – New evidence hints ALS may have autoimmune component
No. 4 – Noninvasive spinal stimulation extends survival in mouse model
No. 3 – High sugar diet plus riluzole linked to slower progression
No. 2 – Geographic link between ALS and MS suggests environmental factors
No. 1 – Actor Eric Dane raises ALS awareness in TV drama
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For those with genetic ALS, there has been quite a lot of research news. And I believe it will continue through 2026. However, for those of us with sporadic ALS, the advancements have been dismal. We are still in the beginning stages; laboratory tests, mouse models, Phase 1… followed by not-so-stupendous results. I’m not being negative, only being a realist. This is about the same stage that research was in when Iwas diagnosed 16 years ago. I’ve learned not to pin my hopes on an imminent cure, waiting with bated breath. But to focus instead on the quality of my life right now and how I can help other ALS patients.
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I think mine would be losing the ability to use my hands and arms. I have been able to accept and live with swallowing issues, very weak feet and legs, and voice and pronunciation challenges… but losing the ability to type, brush my teeth, put clothing on, etc., is a big fear for me. I realize others have already reached this stage of symptom progression, so I don’t mean to fault your life with ALS. Just sharing what I feel from my current perspective.
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Shane, do you have a link to the research that you can share here, so we can learn more about it?
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I tend to see the irony of the situation. Or, that my symptoms make me feel as if I am in a comedic movie or weekly TV series.
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Although we are still miles away from having a cure for ALS, I’d say that the treatment for genetic ALS — Tofersen (Qalsody®) has proven to beffective in slowing down symptoms.
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Since ALS has affected my voice, most of these devices do not understand me. I have to use alternate methods or ask a family member to help out. I wonder if people with a heavy foreign accent have the sme difficulties?
I wish technology would move away from assuming we can all speak to our devices and toward more inclusive options.
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All good suggestions…….. but, I’d rather not have to go through the tedious text-enter-computer voice manipulation just to give a device a command, or be in conversation. I guess I’m spoiled, but I don’t want to give up the spontaneity of using my own voice.
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Early on in my life with ALS, I noticed how coping with my symptoms was more difficult during the holidays. So, I created this list/reminder…. it’s been helpful to me every year.
“How I CHARM through the holidays”
https://alsnewstoday.com/columns/als-charm-holiday-stress-list/ -
I recently wrote one of my columns on this topic… I’ll link it here. What other tips do our members have? Any pet peeves?
https://alsnewstoday.com/columns/i-simply-soak-atmosphere-manage-holiday-stress-als/ -
I encourage caregivers to fill out the survey – – I know you are already busy enough, but this quick survey and your responses will help “pay it forward” for other caregivers like you.
We all appreciate you!
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I will be interested to read the tips from our forum members. Especially from caregivers, who are already managing so much.
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Amanda, I love your idea of an I Don’t Care list. Let’s all share what’s on our lists. Here are a few of mine:
I don’t care if I speak slowly… conversations around me need to slow down anyway.
I don’t care if I have to drink my coffee with a thickening powder… I pretend it’s one of those fancy coffee-flavored malts.
I don’t care if I have to use a rollator when I walk around the house… It’s a good way to carry stuff from room to room.
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I’ll admit that right after my diagnosis, I was embarrassed to talk about it. Heck, I didn’t even know what ALS was, much less having to explain it to someone else. But over time, I learned more about it, plus writing my ALS and Wellness blog was cathartic.
Now, I don’t bring it up in conversations unless someone asks me… I’m comfortable letting people treat me just as I am.
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I agree — that’s what is so frustrating about getting caught up in the latest announcements, breaking news, etc — it usually turns out to be about theories or trials with fish, mice, or still in the petri dish. The hype is to bring notice to the lab … not give pALS helpful facts.
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Good one Edward-joseph-mytych! 😉 😉
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eric-jensen, I am so sorry to read that your mom broke her leg… and on top of it she was your only caregiver, and you now have to manage by yourself. Have you contacted the ALS Association in your state for advice on finding an alternate home care aid? Having someone come to your home for just a few hours might be helpful.
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john-walker, I can relate to your frustration following your diagnosis. Seems the mediical experts know more about how to describe ALS than the cause, the treatment, or cure. Dr Bedlack is a dedicated neurologist and I follow him as well. As far as supplements go, Dr Bedlack hasn’t found them helpful – – I take zero supplements and am in my 15th year of ALS. My advice is save your money.
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Or maybe we are keeping our bodies active and sharing a positive attitude?
I agree with you that someone should be researching slow progressers and looking for commonalities.
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Hello Scott, your dedication and caring for your wife is wonderful. Many hugs to you both. I’m sure someone in our forum will share their similar rxperiences with you. Meanwhile, have you checked in with the ALS Association in your state? They are good at connecting patients and caregivers with each other.
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Yes, writing about what we’re experiencing is very cathartic.
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Katy, I agree with you, totally! I’m amazed that medical professionals don’t know what ALS is. Even after I fill out all my medical history on their forms, I get asked about it.
I applaud your forthright attitude – – keep at it!
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All excellent tips, Jane!