Clementine

The median survival time from onset to death ranges from 20 to 48 months, but 10–20% of ALS patients have a survival longer than 10 years. Older age and bulbar onset are consistently reported to have a worse outcome.

 

From this study published https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3515205/

My number one advice is to forget about t…[Read more]

Hi Jane

You are right that there are many trials going on. You need to do your homework and look at the trial you’re considering your daughter for and the possible benefit vs side effects. Her neurologist should be able to tell you what each trial is targeting in regards to ALS. Also look at iamALS.org. They’ve built a nifty database that lis…[Read more]

Hi Simeon- thanks for the information. I know only certain drugs are available on PBS. My neurologist won’t prescribe some off label that I’m interested in. He made it sound difficult. That said, I may take your advice and see if my GP will do it instead. Cheers.

I read this article when it came out and I have also included berries in my diet.

I can’t say if it’s making a difference yet but I am a big believer in eating as much fresh and organic produce as possible.

I’d definitely do the Healey trial, due to the reasons listed above by others.

Another reason is that I’m currently on a trial in Australia called Rescue ALS and the drug is CNM-Au8 (or placebo). It’s one that is also being tested on the Healey platform trial.  I’ve been on it for 6 months and happy to discuss my experience and results if you w…[Read more]

Hi Steve,

I’m from Australia and here it is very difficult to get off-label drugs. We do have a special access scheme where doctors can apply for use of a drug not approved, but there is a bit of a process to it.

I’ve read on some Facebook ALS forums that some doctors in the USA will prescribe off-label drugs but you have to spend a bit of…[Read more]

Hey Robert

You can actually get liquid riluzole to make it easier for administration via your feeding tube. I only learned of this recently during a hospital visit.

Regards Danielle

Like Walter, the news site is what led me here.

I’m new to forums and the types of conversations being held.

I like the FB group forums but it can get very noisy due to the amount of people on there. You can however search for answers very quickly without having to post. It can be a little overwhelming with the information and very sad with s…[Read more]

It’s fantastic advice from Dagmar. The  article on ‘the one thing to bring’ should be read by every newly diagnosed pALS.

My experience in Australia was similar in that I felt like I was being prepared for death rather than maintaining where I’m at. That said, I think a positive change in mindset is fundamental in how we approach this journey…[Read more]

Hi Igor

Have you posted this in the no more excuses FB group?

Also healing als are doing a tremendous about of research at the moment and looking for volunteers.

I’ll PM you with my thoughts

Hi Margaret, exactly what Suzanne said. If you take riluzole it could be making you nauseated. It also happened to me so I only take it at night now. I don’t experience nausea anymore during the day.
Ginger helped me with nausea. Eating smaller regular meals is also helpful. The nausea tends to be exasperated on an empty stomach.

Great advice Dagmar!

I have bulbar onset so speech and swallowing have been my major challenges to cope with.

For me:

1. I monitor my daily calorie and protein intake via an app. It’s easy to not meet your nutritional requirements when you have bulbar onset because of the difficulty swallowing.

2. I avoid soft breads, dry breads, anything too…[Read more]

It’s my bad Dagmar because I asked for the list.

I sincerely wasn’t trying to railroad the discussion about muscle twitching. I’m just super interested in all the supplements our fellow pALS take.

Thanks so much Stephen for the list. This is brilliant. 🙏🏼

I’m currently experimenting with a range of different supplements too. I’m trying to manage my energy, twitching and cramps. My dietitian recommended increasing my water intake for the cramps and this has helped immensely.

Dagmar,

I do understand where you’re coming from but som…[Read more]