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Amanda

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@amanda-sifford

@debra Welcome!! I just wanted to say hello and welcome you as to the ALS forum too. Dagmar and I are the moderators and we are here to help in anyway we can. View
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  • Profile picture of Amanda

    Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 2 days ago

    @Jerry

    Are you on Facebook?  There are several ALS groups on Facebook.  We could start a FB group for fALS and start there. I’ll do that today.

  • Profile picture of Amanda

    Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 2 days ago

    Angel, let me do some research and see if I can find anything.  I’ll update you in a day or two.

  • Profile picture of Amanda

    Amanda posted a new activity comment 2 days ago

    Hi Annette,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda posted a new activity comment 2 days ago

    Hello Eric,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda posted a new activity comment 2 days ago

    Hello John,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda posted a new activity comment 2 days ago

    Hello Heidi,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda started the topic The End of Summer in the forum Living With ALS 2 days, 22 hours ago

    Can you believe summer is almost over?  It feels like I waited and waited for it to begin, and in a blink, it is gone. 

    Do you have any special events or travel plans for the last part of the summer? Where will you be going and/or what do you have planned? Is there anything special about the end of summer that you enjoy?

  • Profile picture of Amanda

    Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 3 days, 23 hours ago

    @ Gideon

    It sound like a very difficult situation for both you and your wife, and I’m sure that is an understatement.  Have you reached out to the ALS association or Hospice? https://www.alstexas.org/  Sometimes these organizations can help provide some care and support and answer some questions. I’m sure you are doing the right things for your w…[Read more]

  • Profile picture of Amanda

    Amanda posted a new activity comment 1 week, 1 day ago

    Hi Mark,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda posted a new activity comment 1 week, 1 day ago

    Hello Doreen,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda posted a new activity comment 1 week, 1 day ago

    Hello Bill,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
    • Profile picture of Bill Osullivan
      Bill Osullivan replied 1 week, 1 day ago

      I will do my best to add value. I have a very long history of ALS in our family going back to Germany in the mid 1800’s. Of course some did not know what the wasting but later my great grandfathers
      siblings and our branch of the family have had 22 relatives attributed to ALS. When I was finally diagnosed after 18 month, I had the genetic test a…[Read more]

      • Profile picture of Bill Osullivan
        Bill Osullivan replied 1 week, 1 day ago

        Sorry, I am the oldest of my brothers and sisters at 66 going on 67. Retired from 23 year Navy career and another 23 years in industry.

  • Profile picture of Amanda

    Amanda posted a new activity comment 1 week, 1 day ago

    Hello DJ,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda replied to the topic When Should They Keep Their Mouth Closed? in the forum Living With ALS 1 week, 1 day ago

    Wow, I am learning a great deal from all of you that are sharing.  So many things that never even crossed my mind. It is amazing how much we can learn from each other.

    Amanda

  • Profile picture of Amanda

    Amanda posted a new activity comment 1 week, 3 days ago

    Hello Nikki,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda replied to the topic What is Your Self-Care Plan? in the forum Living With ALS 1 week, 3 days ago

    Katie, you are so right!

  • Profile picture of Amanda

    Amanda replied to the topic Hospice for ALS in the forum Living With ALS 1 week, 6 days ago

    Kathy,

    My family had Hospice care for both my father (ALS) and my stepmother (Cancer).  We used their services for end-of-life care and they were fabulous. The nurse and social worker were so educated, informed, compassionate and helpful for our family.  My parents passed away just 11 months apart so we developed a close relationship with our H…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic In memory of Marianne Opilla in the forum In Loving Memory 1 week, 6 days ago

    Amy,

    Thank you so much for sharing.  Your mom was a valuable member of our forums and she helped many of our members with her input and advice.  When a family can think of others when they are going through such a tremendous loss just shows how kind and generous Marianne’s family is. Thank you for taking the time and energy to raise so much m…[Read more]

  • Profile picture of Amanda

    Amanda posted a new activity comment 1 week, 6 days ago

    Hello Christine,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an e…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda posted a new activity comment 1 week, 6 days ago

    Hi Pete,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
  • Profile picture of Amanda

    Amanda posted a new activity comment 1 week, 6 days ago

    Hi Amy,
    Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

    We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]

    View Conversation
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