Danielle Uskovic and Amanda are now friends 2 years, 5 months ago
Clementine and Danielle Uskovic are now friends 2 years, 7 months ago
Danielle Uskovic replied to the topic Living Longer with ALS in the forum Living With ALS 2 years, 7 months ago
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]
Danielle Uskovic and Jane Kriskey are now friends 2 years, 9 months ago
Thanks for your advise. Lisa I believe, is on the list for the Healy Trial but it is only in five states right now, Her doctor thinks it will be in her area in October. That one looks very promising. I do thing there is a lot more attention to ALS now and I am hopeful that , if not a cure, something to prolong life, till there is one…[Read more]
Danielle Uskovic replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 9 months ago
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]
Danielle Uskovic and Peter Powell are now friends 2 years, 9 months ago
Danielle Uskovic and Jay are now friends 2 years, 9 months ago
Danielle Uskovic replied to the topic Use of Off label treatments. in the forum Research Topics 2 years, 9 months ago
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.
Danielle Uskovic replied to the topic compound-found-in-blackberries-prolongs-lifespan-reduces-disease-severity-in-als in the forum ALS News 2 years, 9 months ago
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.
McKenna Baum and Danielle Uskovic are now friends 2 years, 9 months ago
Danielle Uskovic replied to the topic HEALY Platform Trial in the forum Research Topics 2 years, 9 months ago
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]
Danielle Uskovic and ed are now friends 2 years, 10 months ago
Danielle Uskovic and Stephanie are now friends 2 years, 10 months ago
Fernando Santana da Silva and Danielle Uskovic are now friends 2 years, 10 months ago
Danielle Uskovic replied to the topic Use of Off label treatments. in the forum Research Topics 2 years, 10 months ago
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]
Danielle Uskovic replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 10 months ago
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.
Danielle Uskovic replied to the topic Do you have any feedback about ways we might be able to improve our forums? in the forum Using our Forums 2 years, 10 months ago
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]
Danielle Uskovic replied to the topic ALS Clinics — Why Do You or Why Don't You Participate? in the forum Living With ALS 2 years, 11 months ago
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]
Danielle Uskovic replied to the topic A fast way to win ALS not totally but … (part 2) in the forum Research Topics 2 years, 11 months ago
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
Danielle Uskovic replied to the topic Constant nausea, in the forum Living With ALS 2 years, 11 months ago
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.
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