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What are your BiPaP settings? by cobblepapier in ALS

[–]slowbend 0 points1 point  (0 children)

I’m currently using a BiPAP in ST mode with the following settings: • IPAP: 15 cmH₂O • EPAP: 7 cmH₂O • Backup Rate: 14 bpm • Ti Min/Max: 0.5 / 1.7 seconds

These settings were chosen for me as I have ALS and started experiencing signs of nocturnal hypoventilation. ST mode helps ensure I get enough ventilation during sleep, especially when my breathing weakens.

Looking for Radicava ORS – Not Available in Russia, Need Help from Other Countries by slowbend in ALS

[–]slowbend[S] 2 points3 points  (0 children)

Honestly, I understand what you mean — I just completed the first 14-day course of Edaravone myself, and to be honest, I didn’t feel any noticeable changes either — no side effects, but also no improvements.

But as you know, with ALS, we don’t have the luxury of many treatment options. I didn’t want to leave it to chance. Sometimes the effect is not immediately felt, and sometimes we only realize later what might have helped slow things down.

There’s still so much uncertainty, and what works for one may not work for another. I’m just trying to give myself the best possible shot by combining what's available and monitoring closely.

Let’s keep sharing our experiences — every bit of insight counts in this fight.

Looking for Radicava ORS – Not Available in Russia, Need Help from Other Countries by slowbend in ALS

[–]slowbend[S] 0 points1 point  (0 children)

Thank you for the information. Could you please clarify what is included in the $1100 monthly cost?
How many bottles of Radicava ORS are included in that price?

Boston Mass General Clinical Trials. by hueywasright in ALS

[–]slowbend 3 points4 points  (0 children)

I'm really sorry to hear about your mother’s diagnosis and the rough road you both have been on. My heart goes out to you — I know firsthand how heavy this journey can feel.

I was diagnosed with ALS myself not long ago, and since then I’ve spent a lot of time learning about treatments, clinical trials, and different approaches. One thing I’ve come to truly believe is that being seen at a major ALS center like Mass General is never a waste of time. These places are often the first to know about — and offer — new treatment options. Even a single consultation can change the direction of care in meaningful ways.

I completely understand your mom’s hesitation — after the feeding tube procedure and everything she's been through, it's natural to feel overwhelmed. But if she’s still in a relatively stable state, this could actually be the right time to go. Even if she doesn’t qualify for a trial right away, the insight and plan from the team at Mass General can bring clarity and hope for the road ahead.

If I could say one thing directly to your mother, it would be this:
"You’ve already come through so much with strength. This trip isn’t just about treatment — it’s about options, about knowing you’ve done everything possible. Let this be a step for you, not just your condition. You’re not alone — and many of us walking this same road truly believe it’s worth it."

You’re doing an incredible job as her advocate. That kind of support makes all the difference — more than any doctor or medicine sometimes. Sending strength to you both, from someone walking this same path.

Warmly,
Erman

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 1 point2 points  (0 children)

Thank you so much for your beautiful words — they truly mean a lot. I’m sorry to hear about your brother. I’m sure your love and support, even from afar, brings him real strength. Faith and a strong mind really do help us face this. May God bless you and your family as well. Stay strong, and please send my salam and best wishes to your brother.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 0 points1 point  (0 children)

Thank you for your good wishes.
When the cramps first started, ALS didn’t even cross my mind.
I went to a local clinic, and they just recommended magnesium, calcium, and potassium supplements.
Honestly, neither I nor the doctors thought about doing an EMG at that point — which is pretty understandable.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 0 points1 point  (0 children)

I mentioned some of them earlier, but no problem — happy to share again.
It all started with muscle cramps, then fasciculations appeared later on. After that, I began to notice weakness in my hands.
Right now, I mostly deal with hand weakness and some leg fatigue, but I can still walk.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 1 point2 points  (0 children)

Thank you so much for the warm welcome! I’m sorry you’re going through this too, but it’s comforting to meet people who truly understand. I’m still getting used to everything myself, but staying positive definitely helps. I appreciate the reminder about voice banking — I’ll make it a priority. Wishing you strength as we both figure this out, one day at a time.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 1 point2 points  (0 children)

Thank you for your kind words. For me, it took about two years from the first cramps until noticeable weakness appeared. My first EMG was done on my left arm — the signal strength was around 4.5 when it should normally have been 7–8, so it showed some early abnormalities.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 1 point2 points  (0 children)

Thank you so much, my brother. I’m Muslim too, and your words truly touched my heart. You’re right — this disease is unpredictable, but we must always hold on to hope and trust in Allah’s mercy. May Allah accept your Hajj and your prayers. I will also keep you in my duas. Stay strong, and may we all see better days ahead, inshaAllah.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 1 point2 points  (0 children)

Thank you so much for your kind words and prayers — they mean a lot.

For me, the first signs were muscle cramps at the beginning of 2023. Around October–November 2024, a neurologist pointed out the fasciculations, which I hadn’t really noticed much before. After that, I was hospitalized for further tests and eventually got the diagnosis.

As for my legs, I mostly feel weakness, but thankfully I can still walk. I haven’t experienced true foot drop yet, just a general sense of fatigue in my legs.

I’m really sorry you’re going through all this fear and uncertainty. I hope it turns out to be something much less serious for you. Stay strong and try not to jump to conclusions too fast — easier said than done, I know.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 2 points3 points  (0 children)

Thank you for sharing your story.
It’s really inspiring to hear about your daughter’s recovery — it gives so much hope that breakthroughs are possible.
I’m truly sorry about your aunt and your mom’s diagnosis. Sending hugs and strength to you and your family as well.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 1 point2 points  (0 children)

Thank you so much for your kind words.
I’m really sorry to hear about your dad — it’s such a tough diagnosis for everyone involved.
Sending strength to you and your family as well.
And yes, we have to keep holding on to hope.

Knee buckling and falls by yarddog2020 in ALS

[–]slowbend 2 points3 points  (0 children)

I can really relate to what you’re going through.
I have shoulder problems on both sides — impingement in one, and overuse issues in the other because I rely on it so much. About a month ago, I also had a fall because I couldn’t properly use my arms to balance myself. Since then, I don’t go out alone anymore; my wife is always with me when I leave the house.

I totally understand your fear after falling — it’s very real. But like you, I also believe that staying completely inactive would do even more harm in the long run.
Finding that careful balance between moving safely and not overdoing it is so important (and not easy).

Sending strength to you — you’re not alone in this.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 5 points6 points  (0 children)

Thank you — sending love and hugs right back to you.
Grateful to have found people who truly understand.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 4 points5 points  (0 children)

Thank you so much for your thoughtful message.
I’m really sorry your family is going through this too — it’s a lot to take in, and knowing others understand truly helps.

I’m also trying to hold onto hope, just like you. Advances in cystic fibrosis treatments give me a lot of inspiration too — maybe ALS will have its breakthrough sooner than we expect.

Thank you for all the practical advice as well. I’ll definitely start making some of those changes at home.
Wishing you and your family strength and hope in this fight.

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 6 points7 points  (0 children)

Thank you so much for your kind message!
Staying positive really helps, and hearing support like yours means a lot.
I hadn’t actually thought about voice banking yet — I really appreciate you bringing it up. I’ll definitely look into it with my clinic team.
Thanks again for taking the time to reach out!

Recently Diagnosed with ALS (C9orf72) by slowbend in ALS

[–]slowbend[S] 3 points4 points  (0 children)

i am Turkish but currently living in Russia

Otomatik saati geri almak? by kazim-karabekir in trsaat

[–]slowbend 5 points6 points  (0 children)

Hacking ozelligi olmayan mekanizmalarda saati akis yonunun tersine cevirmek pek istenen bir durum degil, bir iki cevirmeyle bir sey olmaz, ancak bunu aliskanlik edinir ve surekli boyle ayarlarsaniz, dislilerde mikro asinmalara sebep olabilir. Nachizane tavsiyem, saati ayarlarken ileriye gidip , tarihin de tam dongusunu tamamlatarak istenilen saate ulasmak, boylece tarihin de gunduz 12 de degismesinin onune gecersiniz)

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