Viewing 6 reply threads
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    • #20878
      Kathy stitz
      Participant

      I can really relate when other pALS have said they feel alone in this experience.   I often feel alone and forgotten.   I rarely have visitors or family and friends contacting me to see how I’m doing.  It seems like everyone is busy with their own lives and what they are doing.  Nobody understands what I’m going through.   I guess I can’t expect them to.  If people don’t have a terminal illness, they’re not going to understand what it’s like.  That’s why these forums are so important.  We all know the challenges and struggles we face on a daily basis with ALS.  We can provide information to each other and help and support each other.  I’m very grateful for this and want to thank all of you and wish all of you the best.

    • #20879
      Dagmar
      Keymaster

      Kathy, kudos for your courage in sharing your feelings of loneliness. Many of our friends don’t understand the needs of having to live with a chronic illness. They have been “trained” to think illnesses go away, and we get better. They don’t understand the long-haul nature of ALS.

      I’m glad you are a member of our forum. You have contributed much and even reach out in support of other members. We value you 🙂

      Sometimes it helps to let your friends know how to help…

      “How to Help Your Friends When They Ask How to Help You”

    • #20880
      Kathy stitz
      Participant

      Thank you so much for your response, Dagmar.  I really appreciate it! Thank you for all that you do to help pALS and their caregivers.

    • #20894
      Ilana Schatz
      Participant

      hi Kathy –

      What I’m learning three years in is that people are afraid of saying the wrong thing so they don’t say anything at all, or they don’t want to be intrusive. I started writing a monthly update and send it to people I wanted to stay in touch with; I also invited people to ask questions – people have been more responsive.

    • #20905
      Kathy stitz
      Participant

      Thank you for your response and those are great suggestions!

    • #20906
      Ilana Schatz
      Participant

      Kathy,

      Through your ALS clinic or your primary care physician, ask to be referred to their palliative care team. They have social workers and chaplains available for emotional and spiritual support. Palliative care is available to anyone with a serious illness, and not just in hospice or at end of life

    • #20910
      Kathy stitz
      Participant

      I will ask about palliative care and thank you so much for your help.

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