Thanks for sharing this discussion. I’ve also been reading about peptides and their role in ongoing neurological research. While there isn’t enough evidence to support their use as a treatment for ALS, I think it’s interesting to follow new research as it becomes available.

Hi everyone,

I’ve been reading about the growing interest in different peptides being investigated in preclinical and experimental neurological research. I understand that there are currently no peptide therapies that are proven or approved to treat ALS, but I’m interested in following the research and learning more about the science behind…

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For me, the letters now stand for:

Adapt – Learn – Survive

All very good tips for our other members. Thank you for sharing!

It is so good that you’ve found ways to take care of yourself — yes, days will have ups and downs. Simple things like a manicure (aka., someone else holding YOUR hand) and petting your dog are great suggestions for other caregivers.

Being a caregiver for an ALS love one is challenging, heartbreaking and a wonderful feelings. Somedays I’m overwhelmed. And then all is good. We made it through another unexpected challenging day. I schedule time to slip away and get a manicure and pedicure. It does the a world of good to my mind. And too, there’s the family dog, Prissy, that…

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Yes! Hooray for AC!

It sounds like you follow a great self-care routine!

Good advice!

Being a caregiver can be overwhelming. It’s so good you’ve found a way to keep doing what interests you and gives you balance.

Not in any particular order: Visits with friends and family; therapy; gardening; writing; making snapfish books of memories; making lists of stuff that needs attention; delegating stuff that needs doing; cranking the tunes; crying/sobbing; watching silly shows; brushing the cat; if I have the luxury of time, taking a walk; playing cards with…

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It is good to be a stable person.Have good out side help to be stable.It is nice to have a few changes in your week.

My time to do other things is clearly limited. I have friends from a men’s group that I keep up with. Also I play bass in church every other Sunday giving me time with the friends there every other week. My hobby is RC airplanes. I really enjoy it as it touches a few of my hot buttons, its technical, its mostly outdoors and very social. So I…

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I stay in air conditioning 24/7. Without it, i’d be done because i also have MS whcih I have had for 43 years then I was diagnosed with ALS

I find that even sitting all day in air conditioning, I have to make sure I am hydrated throughout the day.

Fun tip: it’s so hot here in Arizona that when I’m outside, I always carry a small oven mitt (or hot pad) to protect my hands from hot metal & plastic surfaces like: car door handles, the door frame, dashboard, or auto push pads.

Summertime can bring with it lots of activities… too many perhaps. Plus, it seems that everyone around the world is experiencing extreme heat. Whenever I have to go out, the heat just zaps my energy – even for the next few hours when I’m finally inside again. I’ve noticed my ALS has made my body more sensitive to the heat. 

How does the summer…

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Thanks for the info! Please keep us posted on how the clinical trial goes. Hopefully if successful it can be quickly brought over here to the US and go thru the process for FDA approval

Wow, that is awesome!! Please post updates as you learn new information. I am hopeful that the ALS Association and community may be able to meet the loathy goal of making ALS a livable disease by 2030. I would prefer a “cure” verse on going treatments, but scientist and doctors are on the right track.

Congrats on the day, the honor, and… the pitch! Thank you for helping raise awareness of ALS <3

Philip,

That’s awesome! I’m so happy you were able to have that experience.

Amanda

On June 2 at Chicago Cub Wrigley Field Lou Gehrig day my family was recognized on the field before the game. I was honored to be able to throw out the ceremonial first pitch.

Philip

Hello Virgo777, I’m sorry to read that you’ve been losing function in your other hand as well as your back and neck. This is the perfect place to share that news with us. Not every month has good things happening in it — and we have to acknowledge the reality of our individual situations.
May I ask if you are seeing a physical therapist…

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There is an experimental drug in China called Reg17. Specially targeting Sod1, we have achieved excellent results and have entered the second phase of clinical trials.

I’ve mentioned that I get QALSody treatments targeting the SOD1 mutated gene.

Most of my progression stopped from the neck down. Next month I will get a cystogram so they can do imaging to see if there is any reason why the drug may not be getting into the braid – that’s where the medication needs to reach to impact my muscles from the…

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Being a caregiver to someone with ALS or another critical illness a person can become overwhelmed and exhausted quickly.

As a caregiver or a person helping take care of someone with ALS, how do you take care of your mental health?

I’m so happy you were able to get on QALSody so quickly. It also sounds like you and your doctors actually caught ALS in the very early stages. My cousin was diagnosed with ALS in November and stated treatments in December. My doctors believe that when SOD1-ALS is caught early the drug may stop the progression. It still blows my mind that we…

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I have contacted this company, but there is no way. I am in China. I can’t get through. So I can only hope that some patients can transfer it to me if it doesn’t work.

I am sorry but I have-lost function to pick up from my right hand that was weaker but now left side hand and arm is also affected within in 4 weeks. Can’t lift myself up from the bed if lying down. From the neck down to lower back no control and tend ro fall back on bed if there is no support under neck to lift ne with a hand.. I requested…

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A big shout-out to all who participated in the Funny Moments event earlier this month. Thank you for the chuckles!

We purchased several Smart Plugs and use them for our living room lamps. I used to not be able to turn them on or off — due to the fiddly switch located way under the lamp shade and, my rollator wouldn’t let me get close enough to the lamp. Now, I can hold a remote, press the button and turn the lamp on or off — while I’m sitting across…

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One of the moderators over on the SMA News Today Forum (Spinal muscular atrophy), kindly shared this graphic with me. It’s a reminder that during Amazon’s Prime Days, good deals can be found for products that can help us live better with our conditions, such as SMA or ALS. Even if you happen to have missed these special-priced days, these types…

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Living with ALS can sure be a challenge. Every day, there seems to be “one thing after another.” So much so that we can overlook the little things that went right. Let’s cheer each other on and give ourselves some well-deserved kudos.

Tell us one or two good things that happened to you this month. We want to support YOU.

This is a tough, but important question. Advocacy from celebrities can move the needle forward on awareness, research and funding, in particular from government entities e.g. Eric Dane’s meeting with Congressional representatives. However, I wouldn’t expect that from anyone who is simultaneously living with ALS. During my husband’s journey we…

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jhogan, I commend and thank you for what you do (and have done) to help raise awareness of ALS. We don’t have to do big things… like you said, word of mouth is one of the best ways.

DrBarb, I have the same problem when I’m in a group setting or with crowds. I’ve used a “personal voice amplifier” with success. Perhaps this could be of help to you? It’s cheap, available on Amazon, and easy to use.
https://zoweetek.cn/product-item/zoweetek-10w-portable-mini-voice-amplifier-with-wired-microphone/

I wrote about…

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Amanda, I too have the SOD-1 mutation determined from a genetic test done as a last resort. This followed 4 years of symptoms that slowly got worse. I was able to get on Qalsody almost immediately beginning April 2025. Symptoms began in one foot and proceeded to lower leg and foot weakness in both legs. Started to experience cramping…

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Yes, I talked extensively with my family doctor and my psych doctor before starting the testing process. Here in Alberta it was done through Alberta Health services and requires 2 or 3 in depth counselling sessions with the awesome people at AHS genetics before your blood work is done.

Since my only symptoms are progressive loss of speech and swallowing abilities, I’d have to list speech as the most challenging symptoms. I can still talk and swallow but I have to be deliberate. I don’t do well in crowds or where there is loud music. Since I’m a musician, that is the worst.

I completely agree with all of you. I appreciate those that use the spotlight to enhance awareness and I respect those who wish to remain in the shadows to work through this disease. It comes down to a personal decision for every individual. Unfortunately, it is typically after a person is diagnosed or has someone close to them being…

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Dorothy, may I ask what you are doing to help support your breathing? Hopefully, it’s helping you.

Are you able to breathe better now?

I do not think we should not expect anyone to come forward with their ALS. Leave people alone.

life is hard with ALS i agree. I have had MS for 43 years and that has been difficult. I didn’t know what difficult was until I was diagnosed with ALS. So now I have both MS and ALS.

ALS is worse. I am beginning to have trouble with breathing. I have BULBER ALS, so that is scary.

I’m struggling for breathing and that’s terrifying so I bought my own air machine to breathe a little easier life is hard with ALS

I don’t believe we should ever EXPECT anyone living with ALS, famous or not, to donate some of their valuable time and energy for ALS advocacy. As I discussed in my earlier reply to this topic, I applaud and am deeply appreciative of every single person living with ALS (whether famous or not) who chooses to use their precious time and energy to…

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I just started allals 9 months ago.Trying to stay ahead of the curve.Also have been at Colombia for 5 years now