edaravone

  1. K

    PICC line

    Hi everyone. Don’t know if I am using the correct terminology, but the suggestion was made to my father to get a picc line inserted for his Edaravone infusions. Right now they insert a port for the 14 days of infusions and then they remove it when he is on his 14 days off. I know that sometimes...
  2. 3

    My sweet father is gone

    Sadly my dad passed away on April 27th/2018, a few weeks after his 76th birthday, seven months after his diagnosis in October 2017. My dad was a very active man right up to August 2017 when he really started to feel something wrong with his legs, arms and speech. Everything hit him at the same...
    • 3fullofhope
    • Thread
    • als cure dad diagnosis edaravone family father life radicava speech symptoms wrong
    • Replies: 17
    • Forum: In memory of
  3. KarenNWendyn

    NurOwn stem cell phase 3 study

    I have looked into this study and had a fairly extensive discussion with the study coordinator at the San Francisco site. I am posting information about this study here in case anyone is interested. Enrollment is still open for this phase 3 study. The study is sponsored by Brainstorm Cell...
    • KarenNWendyn
    • Thread
    • age als als symptoms autoimmune bipap cell cure data edaravone feeding feeding tube financial hours information night nurown progression riluzole stem cell stem cells symptoms therapy treatment trial
    • Replies: 133
    • Forum: Research and trials
  4. Tedstehr

    Unnatural attraction to animals - on Netflix

    I am not sure if any other PALS have this symptom, but I have become addicted to animal shows on Netflix. I have searched through the drug sheets on Baclofen, Edaravone and Riluzole and it mentions nothing about this debilitating adverse affect. I first noticed it a few weeks ago. I decided to...
  5. Bestfriends14

    Restarted Pimozide.

    My husband decide to restart Pimozide nearly a month ago at the lowest dose. The side effects are still present (extreme fatigue, slurred speech, and excess saliva), however, at his last ALSFR appointment, he had not progressed at all. My husband is an extremely slow professor, but he has always...
    • Bestfriends14
    • Thread
    • early edaravone eyes fatigue hope life professor saliva slurred speech speech trial update
    • Replies: 40
    • Forum: Research and trials
  6. M

    My father

    My father passed away last Wednesday surrounded by his family. Despite all the misery that ALS inflicted on his body, his last few days were very peaceful. His condition took a drastic downturn in November, after a couple of cycles on Edaravone. We will never know if this was a cause of his...
    • Miav123
    • Thread
    • als bed bipap christmas coughing dad decline edaravone family father feeding fell questions support transfers walker wheelchair
    • Replies: 15
    • Forum: In memory of
  7. A

    Edaravone Radicava Protocol

    Hi Everyone, I'm looking for some help here as Radicava is now approved in America. We are very close to having the infusions done for my husband in a Sydney hospital. The only thing holding us back is that we don't have an English written infusion protocol. Does anyone have one from their...
  8. J

    Still here thanks to RCH4

    RCH4 revisited again I have been on the ALS drug RCH4 for the past 19 months and I am upset about the moderators comments which are most unfair to a charity who has provided both support and RCH4 free of charge worldwide for years. The moderator here, Laurie, has locked two previous threads...
    • jennyinfrance
    • Thread
    • ability age als clinical clinical trial cost drugs edaravone fda free information neurologist patientslikeme progression riluzole support treatment treatments trial work worldwide
    • Replies: 405
    • Forum: General discussion about ALS/MND
  9. Tedstehr

    Canadian Edaravone Instructions - infusion

    I have watched my craigslist nurse (let's call him Craig) prepare and infuse my Edaravone for about 20 times now. And I know others are planning to get "under the table" infusions done too. So I will describe the procedure for those who may need this information. First, Craig lays down sterile...
  10. K

    Edaravone (Radicava)

    Hi There, my dad was recently diagnosed with ALS. We live in Toronto, Canada. Canada has yet to approve the drug, however I heard that someone from Canada travelled to Japan to buy the medicine. Anyone have any information on how we could go about getting the drug?
    • karzy81
    • Thread
    • als canada dad diagnosed edaravone information medicine radicava
    • Replies: 2
    • Forum: New members
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