The ALS Association

ALS Ice Bucket Challenge Progress

Deciding Whether a Support Group is Right for You

For more than a decade, Jennifer Myhre, Care Services Coordinator, MSW, LICSW, for the Minnesota/North Dakota/South Dakota Chapter of The ALS Association has been helping families cope with the challenges of life with ALS. As a support group facilitator, she has seen firsthand how connecting with others facing similar circumstances can begin to ease the emotional toll of ALS.

“I think people have this idea that people go to support groups just to feel sorry for themselves,” said Myhre. “That’s actually not what happens. It takes a lot of strength to show up and to be that vulnerable, to talk about your situation, and to ask for ideas and support around it.”

Sometimes people confuse support groups with traditional talk therapy. Myhre clarifies that support groups aren’t necessarily meant to be therapeutic, nor should they be used as an alternative to therapy. Instead she said, “Support groups consist of education, sharing ideas, telling your story, getting support, and I think a big piece of it is finding community.”

For people with ALS, attending a support group can be a challenge. Myhre explains, “I think when somebody says it’s hard for me to get there, it certainly might have do with the physical nature of the illness, but I also think it’s hard sometimes for people to get to a certain mindset that allows them to come to group.”

Myhre acknowledges that the struggle to get to group can mean different things to different people. It’s important to know that The ALS Association works to secure meeting locations that are accessible to attendees to ensure that the space itself is accommodating for those reliant on wheelchairs.

Thanks in large part to the Ice Bucket Challenge, more and more chapters are able to offer online support groups, which require added technical assistance. If this is an option that might be of interest to you, consider connecting with your local chapter to inquire about resources available in your community including low-cost transportation to support services.

The timing and instinct to attend a support group can differ from person to person. Myhre said, “What I tell people is to trust themselves around the timing, because I really am a believer in not forcing yourself to do something that doesn’t feel right. I think it’s common for people to say, ‘Well, I wish I had done that sooner, or I wish my loved one had done that sooner, but you just can’t force timing.’”

She also insists that all family members don’t necessarily have to agree on whether or not they should attend a support group. Myhre reassures that not everybody needs to come in order for the rest of the family to participate. Sometimes she finds it’s the family member with ALS that is most reluctant to attend.

Sometimes it’s important for the person with ALS to be in denial for a while. Myhre wishes to assure families that this is an acceptable and healthy reaction. If you’re interested in attending a support group, know the door is always open.

“In fact, most of the time when people come that first time, they are reluctant and they are overwhelmed, and that’s quite usual,” said Myhre. “Inevitably, we see people continuing to come back.”

It’s important to choose what’s right for you and to be open to allowing your feelings to evolve. The ALS Association is here to help you get the support you need when it’s right for you. Call or email The ALS Association’s Care Services team for referral resources: (800) 782-4747 /

Additional Resources

Connect with your local chapter of The ALS Association:

Find a support group near you:

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