Join an ALSA sponsored Support Group

I'm a huge fan of the ALSA support groups! They are a lifeline, when you receive an ALS diagnosis and think you are about to snap off the earth. That lifeline extends throughout the progression of the disease and then supports the grieving process.

Each group is slightly different, but the basics are the same. Each regional group meets periodically (usually once a month) and is facilitated by a volunteer, generally a licensed social worker. Patients, surviving spouses/partners, caregivers, family members and friends share their journey with ALS. It's a safe place to ask all of the "dumb" questions, find out about current research and clinical trials, share the more pragmatic aspects of dealing with the disease, learn from various experts (communication devices, construction, how to give/receive a sponge bath, etc.) and so much more. For me...it was (and still is) a place to feel normal and with patients in various stages of the disease and different progression, it's much easier to get a feel for the bigger picture.

To find a support group near you, check the National ALSA website.