Recent content by Blondrea

  1. Blondrea

    Newly Diagnosed (Bulbar Onset)

    So sorry you are going through this. You sound like a lovely person. If I lived closer, I'd come hang out with you.
  2. Blondrea

    Unapproved ALS Drug

    Thank you, mich5! If it wasn't for you, we would not know about this drug. Thanks for your generosity! Andrea
  3. Blondrea

    Unapproved ALS Drug

    Sorry, meant Mich5! (Not Mitch.)
  4. Blondrea

    Unapproved ALS Drug

    Hi, Mitch. Did you need to get your neurologist's permission to get this drug? (I see this on their website: It will first be necessary for you to find out if your doctor is willing to try to obtain permission from the drug Regulatory Authority in the country where you live to treat you on...
  5. Blondrea

    Unapproved ALS Drug

    Thank you for sharing. Very helpful!
  6. Blondrea

    Concerned twitcher

    Hello. The neurologist didn't find clinical weakness. Later, an ALS expert did (at UCLA). He had twitches for two years before he had weakness in one finger on one hand.
  7. Blondrea

    Concerned twitcher

    Mod clarification: Blondrea's boyfriend was reported to have had fasciculations for two years, was noted as having hand weakness at a doctor's visit, and was unable to turn a key less than a week later. So to add to her post below, he had both weakness and twitching when ALS was first...
  8. Blondrea

    After ALS...

    When my partner was diagnosed, I went to a psychiatrist for the first time. He said something I found reassuring. He told me that I wasn't suffering from post traumatic stress disorder, because there was nothing "post" about it. I was smack dab in the middle of the trauma. And that made me feel...
  9. Blondrea

    newly diagnosed

    So, so sorry. I understand your pain. My boyfriend of ten years was officially diagnosed last Tuesday. "Sweet dreams and flying machines in pieces on the ground." The folks on this forum know how you feel. You will find friendship and understanding here. Andrea
  10. Blondrea

    "I have been diagnosed..."

    So sorry. You have friends here.
  11. Blondrea

    Third EMG, It's Official

    Thank you, everyone, for your words of kindness. Very much appreciated. Andrea
  12. Blondrea

    Third EMG, It's Official

    Thanks, everyone, for your hard-earned words of wisdom. I really appreciate it. Unfortunately, Michael is not a vet. He served in the Reserves, but not for long enough to qualify for help. Darn. And we love our little house. It is a little tree house with huge decks and lots of trees and...
  13. Blondrea

    Third EMG, It's Official

    I am so sad. I was praying for MMN, but EMG yesterday indicated "no way." I knew it was a remote possibility, but having even a flicker of hope was so important. So I am wondering, what do we do now? I am so unsure. Do we travel the world? (Though I have to keep my job to support us.) Install...
  14. Blondrea

    Add me too

    Welcome, Sandy. You are amongst friends.
  15. Blondrea

    Second Opinion Soon, Any Advice?

    Thanks, everyone, for the kind advice. We will request discharge papers. He still doesn't think he qualifies, but worth a shot. That would certainly be lovely.