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…[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]

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…[Read more]

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…[Read more]

Hi Stephen

You have some great advice.

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

Warmly Danielle

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.

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.

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

Thanks for being passionate about ALS and writing about it 😊

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…[Read more]

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…[Read more]

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

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