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  1. Kristina1

    mexiletine side effects please advise

    Hi I was hoping others who are on or have tried mexiletine could chime in with their experience. Apologies in advance for the length of this post. Background: I'm in the AMX0035 (amylyx) clinical trial in the open label phase meaning we know for sure I am receiving the real drug. I was told...
  2. S

    New caregiver

    So sad. Husband diagnosed end of December. He's very used to being in charge and making all the decisions. I am a RN/NP. So I know a bit about caregiving. He fights me on all the ways to do things. Slowly he is beginning to listen to me but it's frustrating. I only seem to cry when...
  3. J

    Can't control my fear.

    Hi everyone. I know this isn't an anxiety or fear forum. But I have some concerns that I am really worried about and confused about due to Google. First off, I'm so sorry for anyone going through this disease- I don't want anyone to be wasting their time reading this because I'm not worth it...
  4. J

    How are you?

    How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
  5. KarenNWendyn

    The empty seat

    A young man was very excited because he just won a ticket to the Super Bowl. His excitement lessened as he realized his seat was in the back of the stadium. As he searched the rows ahead of him for a better seat, he found an empty one right next to the field. He approached the man sitting next...
  6. W

    My dad is still kicking, but recently got the flu.

    Hello, Sorry I've been away from the forum for a long time. Two teenagers, one baby, and full time care of my dad (shared with my mom) was tough.. And then... We decided to move from the USA to Finland. It was my husband's idea actually... He dragged us in June 2018 because he thought we could...
  7. T

    Clinic Visit Tom...feeling nervous.

    Tomorrow we are headed to our 2nd clinic visit -- I am sad and on edge today. Is it because we are facing clinical tomorrow? It's so hard to try and have a "normal" day . We have been living with this dx for almost 2 mos. I think the shock is finally gone - perhaps reality is just setting in...
  8. T

    The Lonely Burden of Not Dumping In.

    Hello Everyone: This is how I basically handle most crisis in my life: How not to say the wrong thing - latimes The gist is, draw a small circle and write the person at the center of the current crisis in the center ring, then draw another ring and write the names of the people most affected...
  9. S

    Genetic testing??

    My husband was dx. In dec. 18 we have very little past family history due to the fact that his maternal grandfather was adopted with no records and his paternal family have all died at young ages ( under 50) except for his father as of now who is 48. Reed is 28 and I am just curious if we...
  10. Buckhorn

    Nearly 6 months S/P Dave's death

    Just checking in to say hello to all the brave warriors out there, both PALS & CALS. Jan. 4th will mark 6 months since Dave's passing. I've been doing remarkably o.k. I've been pretty successful on maintaining my focus on the positive and that The Beast took over our lives later in ife and that...
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