Tagged: ALS, ALS and grief, ALS caregiver, ALS support Groups, C9, Self-care, SOD1
- This topic has 4 replies, 4 voices, and was last updated 7 months, 3 weeks ago by Beth Rookey.
October 9, 2022 at 5:23 pm #22852AmandaKeymaster
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?
October 11, 2022 at 6:03 pm #22863Maggie BroerenParticipant
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.
October 14, 2022 at 12:44 pm #22887Cheryl TeriburyParticipant
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.
October 19, 2022 at 4:54 pm #22908Beth RookeyParticipant
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!
October 20, 2022 at 9:14 am #22909Beth RookeyParticipant
You can contact the CT ALSA at [email protected] You can tell them I gave you the info!
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