Hi Sam,

Just wondering if you went any further on this subject and if you had anything to share.

Thanks,

Luke

Hi Sam,

There was an article in the Dec. 28, 2023 ALS News Today titled “muscle strength, life quality” about transcaranial stimulation. It was a summary of a clinical trial that was done in Italy. I am a pALS not a doctor or scientists but, to me it sounded really good. Unfortunately, I have not been able to find anyone in the USA trying…

Read more

Hi Dagmar,

Has the forums ever addressed the question of home healthcare costs? I know it all depends on what one patient might need vs another’s needs. And, what one persons care giver can do vs another’s but is there any data that says on average a care giver needs X number of hours of help per day and that help costs X dollars per hour? …

Read more

Hi Bernie,  Somehow I missed your input on the Chinese herbal tea til just now.  I’m glad you were able to get something going on that – congratulations.  Does it make sense for me to ask you for the contact information for the person you source your tea from?  I’m thinking maybe I should try to source some via mail order from your person… Read more

Dagmar and Amanda,

Thank you for your work in the fight against ALS.

I think all of us pALS are looking for something “extra” to do while we wait on the science to catch  up to the disease.  The Forums provides a vehicle to discuss the “extras” that interest us.  Responding to a Forum in itself can feel like doing something “extra”… Read more

I submitted a post to this subject, I believe it was Friday June 9 but I haven’t seen it come through.  Did you get it?  Please advise.  Thank you.  Luke

I’m hoping and praying that everyone’s hot topic is successful.

In the meantime, my question is “why aren’t we as a group pushing for a follow up to the January 9, 2023 ALS News article on the Chinese herb patch Ji Wu Li (JWL)?”  As others have noted in their comments, “I’m no scientist”  but, the article hints at being less costly, states that… Read more

Hi Doug,

Looks like you got a great discussion going.

I should tell you, I am an accountant not an engineer but, Creighton’s brace looks like the real deal to me.  The band that Lou replied with also looks interesting.  It looks like a person should be able to sit in a regular chair with it on.  Has anyone tried driving while wearing it?

I… Read more

Hi Doug,

I have the same challenges as you.

I’m not sure what you might have seen other people wearing but, I have made a couple of braces using One Way Velcro, PVC pipe and a belt.   I start with a single piece of 1/2 inch PVC pipe cut to length to basically reach from the top of my head to just below my belt at my waist.   My wife made me… Read more