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  1. konagirl

    Frustrations

    I never get frustrated with my husband. Seriously, I don't. But I do get frustrated with life. There is just so much piling up on me. Before ALS, we have always had a very 50/50 relationship. We both work full time jobs, I cook, he does dishes, I clean, I grocery shop, he pays bills, he takes...
  2. konagirl

    Hype or not?

    We are new to this world, as you all were at one point. I am embarrassed to say, but before the letters ALS were mentioned to us by a neurosurgeon, and I began researching, I had never really even heard of it other than the ice bucket challenge. Now, I see articles all the time, hear news...
  3. konagirl

    Voice banking

    Can someone explain this process to me? Is there a special device I need or (please excuse my ignorance here...) can this be done with a special app on his iphone? If it is a device, do I buy it on my own or is this something the Dr would write a script for? Chad is still accepting a lot of this...
  4. konagirl

    Baclofen

    Ello. For those of you on baclofen, what is your dosing schedule like? Today my husband got bumped from 60mg to 80mg. At 60mg he was taking 2 pills at wake up, lunch and dinner. Now, at 80, they want him at 2 pills ever 6 hours....that didn't register until we got home and I did the math :/ Is...
  5. konagirl

    2 weeks in

    Tomorrow will mark 2 weeks since my husband received his official ALS diagnosis. I feel like I have known for a while, but it sure didn't soften the blow. All of this has seemed to happen very fast. Our first clue that something was wrong was last September, 2015, while he was wakeboarding he...
  6. konagirl

    Clinical Trial Decisions

    Hello, My husband is eligible for 3 different trials coming up in the next month or so under Mayo here in Jacksonville (Dr Boylan). Because they will all overlap on time frames, we have to chose just one. I'm curious to know, does anyone have any experience with the phase 1 trials? My gut is...
  7. konagirl

    Questions

    Hi there, I hope my questions are not too silly, I am just trying to wrap my brain around some things. To be fair, and honest, we do not have a diagnosis yet so maybe I should not even be posting here, please tell me if I need to leave. Our neuro has told us he is confident my husband is facing...
  8. konagirl

    So Confused, please help

    Hi there. Figured it is about time I stop stalking this forum and finally make a post. You are all amazing and brave people, I am hoping for your insight. I am hoping you can provide me with some encouragement. I have come this >< close to posting at least 10 times in the past two months, and...
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