ALS Ice Bucket Challenge Progress
St. Louis
Regional
Chapter
Although each person's ALS journey can vary drastically, support groups offer unparalleled comfort and connection for both people with ALS and their caregivers. Whether it be in a traditional face-to-face setting or through an online connection, it's important to choose what's right for you and be open to allowing your feelings to evolve.
Because of the nature of ALS and its uniqueness to each patient, the Chapter provides individual counseling for individuals, caregivers and children dealing with ALS. Please contact your case manager to arrange for an appointment.
Virtual Support Groups help keep people with ALS and caregivers connected emotionally in a time where we are not able to meet in person. Though the hardships of ALS can create mental health challenges and isolation, through this virtual community, we hope to help everyone feel closer. You are not in this alone.
Virtual Support Group meetings are held on the fourth Tuesday of each month at 4 p.m. To register, visit: https://bit.ly/SupportGroupRegistration
Please contact Melinda Osborn at mosborn@alsastl.org for more information.
Our virtual caregiver support group designed for the unique experiences and needs of ALS caregivers. The group meets the second Monday of each month at 3 p.m. To register, visit: https://bit.ly/Caregiver_Group_Registration.
Please contact Melinda Osborn at mosborn@alsastl.org for more information.
Grief is experienced in many ways. Everyone needs a place to recognize that these reactions are part of the journey of grief. While every loss is unique, through support groups one can bask in the support of others who have experienced loss and understand. Our Beyond ALS Grief Support Group seeks to take participants out of the isolation they may be experiencing and allow them to process thoughts and emotions in a secure therapeutic setting.
The group is lead by a licensed clinical professional counselor. For more information or to register, visit: https://bit.ly/BeyondALSGriefSupport
Caregiver Workshops are presented by former and current caregivers. In addition to insights shared by experienced caregivers, the workshops provide dedicated “hands-on” time, enabling you to experience the equipment and practice the techniques first-hand. Beyond the specific topics of the workshops, you will have the opportunity to talk with caregivers who have experienced some of the challenges you may be facing. All workshops are 12:30pm-4:30pm. Contact melissa.smith@als.org for more information or to RSVP to the next caregiver workshop.
Upcoming workshops:
Overcoming Breathing & Swallowing Challenges- Friday, May 19, 2023
Overcoming Voice Weakness Challenges- Friday, July 21, 2023
Overcoming Lower Body Weakness Challenges- Friday, October 20, 2023
Making Your Home Work For You- Friday, November 17, 2023
There are also ALS-specific support groups provided by other organizations. These include:
ALS forums is a support group community that provides answers, tips, friendship, care and support to people affected by ALS, MND and PLS.
Inspire connects individuals, families, friends, caregivers and health professionals for health and wellness support. Connect with others who know what you're going through.
Diane Huberty, Neuro-certified RN and person with ALS blogs about ALS from both the medical and the patient perspective.
Patients Like Me is an online patient network where you can share your real world health experiences.
