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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]
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.
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.
I do understand where you’re coming from but som…[Read more]
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]
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]
You have some great advice.
I’m interested in what supplements you are taking. Are you able to please share?
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.
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]
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]
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