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KarenNWendyn KarenNWendyn is offline

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Visitor Messages

Showing Visitor Messages 1 to 10 of 12
  1. swalker
    05-20-2018 12:50 PM - permalink
    Sorry to be so tardy in responding. I don't check visitor messages often.

    No, I don't use bipap. I do use nighttime oxygen. I have had lengthy discussions with my pulmonologist on this topic.

    One thing to be aware of is that I have not been diagnosed with ALS. I have been diagnosed with MND-other and told to expect it to follow the same path as ALS.

  2. ShiftKicker
    02-21-2018 07:48 PM - permalink
    ♥ ShiftKicker
    Will do, thx
  3. Tedstehr
    02-20-2018 11:45 PM - permalink
    Hi Karen,
    Just checking in with you. I hope you are holding up. It really is too much to bear isn’t it? Last I heard you are still walking. I am too but I need a wall at the very least, or two canes but a walker is best. Some days I think a wheelchair would take away a lot of unneeded drama - you can only come close to falling so many times before you decide to stay seated.

    Hi to Wendy too,

  4. Herdaughter
    01-22-2018 01:44 PM - permalink
    That would be fun. Both of my parents graduated from Southern Oregon as did my step-daughter so my husband and I have enjoyed the area frequently. My stepdaughter actually lived in Talent while finishing up school.
  5. Herdaughter
    01-21-2018 04:13 PM - permalink
    Hi Karen,
    Are you getting treatment in Southern Oregon or are you coming up to Portland for clinic? My mom sees doctor Goslin at Providence Portland and thought it would be nice to meet you guys in person if you were there at the same time. I hope you are doing ok.
  6. wishmobbing
    12-30-2017 02:50 PM - permalink
    Thank you for the Acronyms and Abbreviations sticky. Are you able to edit it if there are more words popping up?
    I read ROM and guess in this context that it means range of motion. Am I right?
  7. KarenNWendyn
    12-16-2017 11:51 AM - permalink
    Thanks Ted. Best of luck to you with the Radicava. I’m on Riluzole now and seem to be tolerating it so far.
  8. Tedstehr
    12-16-2017 03:25 AM - permalink
    I am so sorry I missed this message. I am relieved to hear you have a slow progression. I am glad LNM dominance can be slow too. I am happy with Radicava, but I cannot say for sure if it is helping. But doing something feels good. Conceptually, sopping up free radicals in my brain seems wonderful. I wish they would do some wider drug trials to get a more definitive result.
    I tried to take Riluzole but I get an allergic reaction - phlegm in my throat. So I stopped taking it. My wife has enough trouble sleeping without me coughing and clearing my throat!

    I was in Medford many years ago, but not much travel lately. If you ever find yourself in Vancouver, BC I would extend the same offer. Maybe we could get Shiftkicker Fiona too!

    Love to you and Wendy.

  9. Tedstehr
    11-10-2017 12:35 PM - permalink
    Hi Karen,

    I drove south towards you this week (not too close however, only Yakima) and i thought about you. Any plateaus? And any progress on Radicava?
  10. Tedstehr
    11-06-2017 11:10 PM - permalink
    How are you Karen? Hope all is well.

About Me

  • About KarenNWendyn
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
    State or Province
    Retired rheumatologist (MD)
    Playing bassoon
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  • Last Activity: Today 12:02 PM
  • Join Date: 07-29-2017


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