1. S

    An intoduction myself

    Hi Everyone, my name is Juri. I have been living with ALS for 12 years now, and I had been gone from this site for about ten years, and during that period of time my FRS dropped from 23 to 1. I am on vent 24/7 (with the use of tracheotomy), I use an eye gaze computer for communication, and I...
  2. T

    Texas/condom catheter - help!

    Hi all, I don’t know what I’m doing wrong. We have the tubing and bag pretty much below his bladder except when it comes out of the catheter and goes down his leg when sitting. It goes sraitet when he is lying down. When he goes it doesn’t empty into the bag.m all the way. Some urine sits...
  3. E

    Female external catheter? (Purewick)

    Quick question on female catheters: I know internal catheters are a no-no typically because of UTI risks. Has anyone ever used a Purewick external catheter? My PALs is in the hospital and they are letting her try one. Is this viable for ALS patients home use?
  4. L

    My Dad Died April 9th

    It has been such a busy time and I hadn't had a chance to post earlier. He was diagnosed 3/23/2017 and progressed rapidly. By May 2017 he was on AVAPS, July 25th he got a feeding tube and by December he had pneumonia and after being intubated for a couple of weeks went home on the Trilogy. He...
  5. M

    Turning to you for an opinion

    You are all amazing people offering incredible support. I stumbled across this forum accidently but would appreciate an opinion on my symptoms. I'm 40 years old with 5 mega young children, all under 6. In Sept 2016, I noticed my thumb was tiring whilst typing and using my mobile. From then, I...
  6. J

    Condom Catheter - where do I start?

    DH (my PALS) is in a PWC. He can no longer stand and doesn't have much use of his arms/hands. One of his friends wants to take him to a concert in a few weeks. This would be his first outing without me. We usually use a Uribag when we're out and he has to go. He doesn't want his friend to...
  7. chally

    Leg warmers

    I hate the thought of going back to long pants for the winter months so I asked a friend to knit me a pair of leggings so I can still wear shorts. Anything to not have to go to condom catheter and also crouch rot. With these I can still pwc outside the side of house and go right out the shorts...
  8. J

    In need of moral support

    Hello, I am new to this forum. I have been reading a lot of the threads and it seems like all of us CALS are dealing with pretty much the same things. I am the main caretaker for my mother, Audrey. My brother and I moved in with her after my father passed away a little over a year ago. Up...
  9. J

    Huge help to control excess saliva from bulbar ALS (Glycopyrrolate)

    About two years after receiving his ALS diagnosis, my dad started to experience excessive saliva. He had to clear his throat through coughing because it was difficult for him to spit. After trying Nuedexta, Amitriptyline, and several other prescription drugs, we found Glycopyrrolate to be by...
  10. N

    Advice Needed - Catheters

    Hi All, As most of you know we have been at this for a very long time. You may have been told that ALS will not affect your bladder/bowels. That may be the case if your PALS goes quickly, but if you choose to vent and they stick around longer than the suggested time frame, you may end up...