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    • #22852

        There are support groups for pALS and caregivers; but they come with pros and cons.

        · Provides assurance that individuals aren’t alone and others share similar struggles.
        · Groups provide each person with the opportunity to receive and give support. Both of these notions are important. Receiving support from others is part of the bonding or therapeutic alliance that occurs in groups; whereas, giving support to others allows for growth and learning.
        · A broader therapeutic alliance, which allows for the incorporation of different points of view.
        · The development of communication and socialization skills, which allows individuals to learn how to express their concerns, and fears and accept input from others.
        · The development of self-awareness, which comes from listening to others with similar issues.
        · The therapeutic nature that accompanies sharing one’s experiences with others who also have ALS.
        · Not being the center of attention. In many groups, the old adage “the squeaky wheel gets the grease” seems to apply. Thus, the level of intervention is not as focused and intense for any single person as individual therapy.
        · A less focused therapeutic alliance.
        · Getting to an in-person meeting may be difficult for pALS or caregivers.
        · Participating in an online group may be difficult because meeting times are not flexible.
        · Not the right fit. Some people are not comfortable in a group setting and may not be able to speak up or ask questions.

        Have you attended online or in-person support groups? What was your experience like? Did you find it helpful? Why or Why not?

      • #22863
        Maggie Broeren

          I was diagnosed 3 years ago and am currently in Hospice at home. I am so fortunate to be surrounded by loving family , friends and neighbors!
          My faith gives me a tremendous amount of support!

          My ALS life is so much better because of all the support and practical tips I have learned in support groups.  My spouse and I live in an urban area with an ALS clinic nearby. The wisdom and compassion we have gained has been invaluable.

        • #22887
          Cheryl Teribury

            I participate in a Zoom ALS Support Group Meeting for PALS three times a month.  Living with ALS can be very lonely.  I find comfort in the friendships that I have developed out of these meetings.  The knowledge that is gained from sharing our experiences is very helpful.


            • #22897

                Hi Cheryl,
                Can you share any information about your zoom group meetings? Are they open to anyone? How can we get more information?

                Thank you so much for sharing!!

            • #22908
              Beth Rookey

                Hi Amanda,
                I’ve been participating in an ALS pALS Zoom chat twice a month in CT for many years. I can’t get to an in-person support groups so these are perfect! They also have support groups for newly dx pALS & they have Caregiver support groups too!

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