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  1. ReginaS

    A friend gave me is book today

    I laughed at the title and am finding some helpful info. Now....not sure if I may post the image of the book cover, really not sure and hoping I am not creating more work for moderator.
  2. ReginaS

    Treg treatment?

    Does anyone here know about this? For us it will be too late. Hopefully, hopefully it can help someone else. It seems it already might. But I sure don't want to spread any rumors. https://www.alstexas.org/houston-neurologist-discovers-treatment-that-could-halt-the-progression-of-als/
  3. ReginaS

    Lost my loved one and first attempts at moving on

    I wanted to let you know that my loved one died Tuesday June 11. He was diagnosed February 2018 and lived about 16 months with his diagnosis. He never fought his ALS but quietly accepted it and made the best out of it, loving the comfort and mobility his wheelchair gave him and making jokes...
  4. ReginaS

    Wheel chair trouble - JSM Bad Cable 7F00

    This is a Permobil M3 maybe 6 months old. For a while the error message JSM Bad Cable 7F00 popped up and we were promised that a cable would be ordered and nothing has happened so far despite follow ups on my part. Today however, the wheelchair simply stopped working for a while. Eventually...
  5. ReginaS

    back pain

    I have searched the forum a bit and read a couple of threads. pALS sits in (permobil) wheelchair all day. Sits in recliner at night - not reclined back but feet up. He does not sit straight as right side is weaker. Often holds up head by putting left elbow on armrest. He needs to sit and...
  6. ReginaS

    what is the difference between "What's new" tab and "New posts" link

    I am not sure and it seems that "What's new" (top links) and "New posts" (links underneath) should be identical. For some reason they are not. I cannot figure out what the difference is. Somebody probably explained it already. My retention is not so great w. interrupted sleep at night. And...
  7. ReginaS

    aspirate -

    PALS cannot drink liquids that are too thin and ensure (plus) is somehow too thick and bothers him. He drinks mostly liquids (and occasionally eats some cheese) but yesterday he wanted to try sole (fish). First bite was ok - 2nd bite was very difficult. He coughed and tried to get it out...
  8. ReginaS

    breathing difficulties

    Hi all, My PALS describes that he has the feeling that the air passages in his head (above throat) are not staying open but collapse or close when his head is in certain positions. Do you know what is happening? He is uncomfortable lying down, elevated lying on one side is OK - on the other...
  9. ReginaS

    difference between the tobii medical device and the tobii gaming?

    My partner is using a surface pro (newest version) with the commercial tobii eyegaze bar for gamers(?) and it works - with a few kinks here and there. (Sometimes we need to restart or unplug the usb and plug it in again, we might have a way now for the bar to stay in place - the adhesive wore...
  10. ReginaS

    9 months past diagnosis

    Hi all, My partner was diagnosed w. ALS in February (2018). He might have noticed the first signs in Oct. 2017 in his right foot. He got a leg brace for drop foot. His right arm/had and foot/leg are very weak. Now he has significant pain in his right wrist. I got him a brace and it's best if...
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