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Narrowminded Narrowminded is offline

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Visitor Messages

Showing Visitor Messages 1 to 9 of 9
  1. soonerwife
    03-28-2019 07:44 AM - permalink
    soonerwife
    That sounds good Sue! I messaged some others last night that showed interest previously. Becky or I one will keep you in the loop with more details.
  2. soonerwife
    03-27-2019 07:59 PM - permalink
    soonerwife
    FYI, Becky and I think it is best to reach out to the ones that have shone interest previously rather than putting it all out there publicly.
  3. soonerwife
    03-27-2019 07:59 PM - permalink
    soonerwife
    Hi Sue!

    Becky and I have been talking about the CALS trip. We are talking about going to the Lake Guston area on the Virginia and North Carolina border.

    We want to go for a few days between August 2nd and August 11th.

    Do you have a preference to what days may work best for you?

    I am super excited to meet you guys in person and to spend some time with you all.

    I think we are going to have a blast!
  4. Hjlee
    10-29-2018 01:25 PM - permalink
    Hjlee
    Hi Sue, the hospital planning to discharge my mom tomorrow (10/30) but they are discharging my mom without PMV and swallow test. I know it is case by case but how long did it take Brian to tolerate (?) speak with PMV?
  5. Hjlee
    10-15-2018 05:36 PM - permalink
    Hjlee
    Hi Sue, this is Jennifer who asked trach question before. You said your husband goat a trach and could talk around the trach. My mom is getting trach surgery this Friday. Should i request certain method for talking? Did you had to request for PMV?Thank you and i will look forward to hearing from you. Best, Jennifer
  6. Bkay
    08-19-2018 03:41 PM - permalink
    Bkay
    Hi Sue
    My husband has ALS. He cannot use his arms legs are very weak and is on the trilogy most of the day and all night. We currently have a caregiver but just found out she needs to go back home to take care of her mother. We live in Pittsburgh and I was wondering if you know of anyone that can help with caregiving. We are paying out of pocket right now.
  7. Emily B.
    07-27-2018 01:48 PM - permalink
    Emily B.
    Saw your most recent post - can you share your email? We have the same age kids and I'm going through the same struggles. Unlike you, though, I'm not brave enough to put it all out there. I would appreciate a friend who understands what I am going through.
  8. grounded
    03-18-2018 09:43 AM - permalink
    grounded
    Hi. I saw your post about Medicare in home care. I found this (link) that might be covered in the upcoming webinars sponsored by Team Gleason. It has some information that might interest you.
    http://www.medicareadvocacy.org/wp-content/uploads/2016/07/ALS-MAP-Webinar-2.pdf

    ps - If you go to the Millvale ALS meetings, you may have met my wife Lori -
  9. KateEmerson
    11-26-2016 10:04 PM - permalink
    KateEmerson
    Hi Sue,
    I just wanted to reach out to you after reading that your husband has been on a vent for 6 years and how hard it is to maintain friendships when we can rarely leave our homes. I have only been doing this for 3 years but have struggled with the isolation it has created. Feel free to contact me when you need a connection with someone who knows what you are going through. Kate

About Me

  • About Narrowminded
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
    If diagnosed, when was the diagnosis?
    07/2007
    City
    Pittsburgh
    State or Province
    PA
    Country
    US
  • Signature
    Sue

    .oxOX***XOxo.
    Queen of Everything

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  • Last Activity: Yesterday 11:41 AM
  • Join Date: 04-30-2016

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