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  1. I

    Very Fast Progression

    I was originally diagnosed with progressive bulbar palsy in January of 2018. At that time we were told that there was an excellent possibility of having several years before things really became troublesome. In April 2018 I had a PEG put in and speaking was no longer a possibility. My legs...
  2. I

    Facial muscles

    I was diagnosed with progressive Bulbar Palsy I. January 2018. Although I could no longer swallow or speak by April of 2018, a PEG. helped and things were ok until Christmas of 2018. My limbs are weakening but I’m making the best of that. My biggest worry is my eyes. Even after sleeping well...
  3. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  4. K


    My PALS finally received his PWC a couple weeks ago. He should have received it almost a year ago, but miscommunications & ball dropping happened. It is set up with a head array so he can drive it, and a joystick in the back so I can drive it. Unfortunately, his neck has gotten so weak, he is...
  5. F

    Thick phlegm

    Hi Can anyone help ? My husband 65 years young, (ex Indian Navy), physically very active till diagnosed and even after, has pseudo bulbar palsy. Diagnosed May 2017. The last couple of months he has lower limb weakness- uses a walker. Is on Edaravone and Rilutor. Of late he has thick phlegm...
  6. I

    Waldo is in Heaven

    Bob Stansbury, also known as WheresWaldo, passed on July 22, 2018. He and his wife, Therese, were members of the ALS Support Group in Chico. I met Bob through this forum and we realized the connection during a Support Group meeting. He was diagnosed years ago but remained upbeat and very...
  7. N

    what to do when...

    My PALS can't sip liquids or eat applesauce to get his pills down? I see him struggle now to suck the fluid through the straw and have asked the palliative nurse how he can take his meds if he can't swallow them this way and she said we just don't give them to him if they don't come in a...
  8. J

    Therapy with ibudilast - on the road again

    hello, i posted in august that my attempt to import ibudilast legally failed due to customs etc. finally, i got a drug (to be true, i got generic) via i prepaired it, so i started day before yesterday. 2 x 50mg/day. no side effects in a 2 days :-) it will take app 6 months to see...
  9. S

    PEG tube question for women

    Hi, I was diagnosed with Bulbar Onset about 7 months ago. I am still able to eat some things, but they recommended that I get the PEG now, while I’m still fairly fit. My problem is that they situated under my breast, which is large. When I sit, my breast covers it, and it gets irritated. I...
  10. B

    82 year old grandmother diagnosed unexpectedly after Fall

    My 82 year old grandmother was diagnosed August 1st after falling July 19th. When we took her to the hospital to make sure she hadn’t broken anything (which she didn’t). I never imagined this diagnosis. In the ER, she couldn’t hold or lift her right arm at all and she was in able to lift her...

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