[Danielle Uskovic]

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 the disease. Keep on living. Acceptance is the key to happiness.

I have spoken to many pALS that have lived for more than 10 years. What I’ve found from my research is that they have a positive mindset, they eat fresh, organic foods, they do moderate exercise, they give back to our community by helping others and are spiritual.

[Danielle Uskovic]

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 lists every trial going on.  It’s brilliant. They are also trying to push two bills in Congress to get promising therapies to ALS patients sooner – they need every person in the USA to advocate this to their local senators

If you do a google search on Clenbuterol and ALS, you will see this is not something new. I’d encourage you to do your homework.

None of the current trials are a cure (unfortunately). They are simply looking at ways to treat the symptoms by extending our life. There was an Ask The Experts webinar in Australia recently which covers some of the current trials (fast forward to the session by Gethin) https://www.facebook.com/mndnsw/videos/2590214314625812/

I’m happy to discuss my experience with CNM-Au8  I’ve been on the trial for 7 months now. I’m due to finish up in October. DM me and I can give you my updates.

Personally If I was located in the USA I would be enrolling into the Healey platform trial. It has the most promising therapies and is a world first approach. Less chance of placebo.

 

[Danielle Uskovic]

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]

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.

[Danielle Uskovic]

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 want to private message me.

[Danielle Uskovic]

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 time looking for the ones willing to do it.

Good news for you is that iamALS dot org is campaigning congress to pass Two bills in the USA to grant faster access to new therapies. This will speed up getting the therapies showing promising results in trials.

Not sure if you’ve checked out any of the current trials but iamALS has launched a new platform where you can easily find trials in your area. It’s a brilliant resource and worth checking out. You can find it here

[Danielle Uskovic]

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

[Danielle Uskovic]

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 some of the content. Sometimes even depressing for someone like me, because I’m  new to my diagnosis and can see what lays ahead. It’s heartbreaking.

The forum here, however is more educational and positive, and I’ve personally found Dagmar’s experiences and knowledge very helpful. I’m much more proactive with my health since reading her blog and advice.

I’ve also met some fantastic people through this forum (we talk regularly) which is a wonderful bonus!

What could be done differently?

Encourage more pALS to write about what they are doing day to day. What are their experiences, what has helped them, what are they doing to stay positive or what are they doing to try to slow their progression, how do they support their cals, what has been the best advice given to them, etc

[Danielle Uskovic]

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 we are on.

I have personally sought out a private team of healthcare specialists that are proactive and provide me with things to add to my daily routine to maintain my current health for as long as I can. I see them more regularly and in conjunction with the ALS (MND here) clinic.

[Danielle Uskovic]

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

[Danielle Uskovic]

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.

[Danielle Uskovic]

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 slippery in texture, lettuce on its own, some fruit like watermelon.

3. Cutting up food into smaller pieces.

4. Using lots of butter and/or olive oil on my food.

5. Foods like pasta, curries, risotto/rice, stews work the best because they have a lot of sauce to help with swallowing.

 

[Danielle Uskovic]

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.

[Danielle Uskovic]

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 sometimes we pALS just need some hope, whatever that looks like. ??❤️

I know personally if I don’t take my vitamins that I feel tired and lethargic quicker.  I eat well and exercise but it’s just not enough.

[Danielle Uskovic]

Igor,

There’s some really good forums I discovered on Facebook because of Bill and Andy on here.

It’s probably worth you joining those groups and putting this discussion there. Literally hundreds of active pALS and cALS in them.

https://www.facebook.com/groups/NOMOREEXCUSESALS/?ref=share

https://www.facebook.com/groups/ALSPatientandCaregivertips/?ref=share

Danielle

[Danielle Uskovic]

Igor

There are plenty of organisations now especially in the USA that will fund research. I AM ALS . ORG is one of those. Here in Australia it’s Fight MND.

Have you thought about proposing these ideas to PhD students at the Universities and colleges? Then going to these non profit ALS organisations with the research to ask for funding?

I think PhD students would be keen. Here in Australia we seem to fund them for new ideas and research.

I’m keen to help in anyway.

[Danielle Uskovic]

Hi Stephen

You have some great advice.

I’m interested in what supplements you are taking. Are you able to please share?

Warmly Danielle

[Danielle Uskovic]

Susan,

Are you doing any exercises to maintain your mobility in your hands and legs for as long as possible?

I’m late to the game on this, but after reading some posts from Dagmar (and blog) and getting some proactive advice from my new PT &  OT, I do a number of mild exercises daily.

[Danielle Uskovic]

Hi Lisa

I know what you mean about buttons and zippers. Like Dagmar I’ve done away with most clothing that involves zippers and buttons. Elastic waistbands are my new BFF. I’ve also done away with tights that I used for the gym. The struggle was too much. Luckily they’ve found a good home with my daughters.

[Danielle Uskovic]

@givst I’ve read this and will check out power plate.

Thanks for being passionate about ALS and writing about it ?

[Danielle Uskovic]

I agree with Chad. Igor this is an interesting and great read.

Not sure if you’ve read “Chasing my Cure” by David Fajgenbaum? It’s a remarkable story of a young doctor diagnosed with a rare and terminal illness that decided to spearhead finding a cure to his disease.

He found a drug already available on the market, for something completely different, that helped.

It’s going to take courageous people like you, me and other ALS patients to look for alternative solutions.

[Danielle Uskovic]

Hi @bonolisa
Like you and our friends @givst @jaycat and @marianne-opillagmail-com I also have bulbar onset.

I’m constantly learning everyday how to manage the symptoms. I’m glad we have a forum like this to discuss how to manage normal everyday activities that can be a struggle to those with ALS.

My friends and family have learnt that I’m always going to be the last one to finish my meal!

[Danielle Uskovic]

Hi @ownlife I’ve sent you a message with my 12 week update.

[Danielle Uskovic]

Hi All,

I’m currently on this trial. I’m located in Sydney Australia. I’ve been on the trial for 4 months. I was recruited last year and had the screening done in early February.

Happy to answer any questions you have about it.

@dagmar-munn @ownlife @diana @jonm @terris100