“A Seat at the Table”

Before being diagnosed with ALS at age 28, Rachel Doboga loved her job teaching 5th grade English. Now, she advocates for a cure for ALS and write stories on her blog, “How I Live Now: Life With ALS.”  Through her writing, she hopes to increase ALS awareness and create a community for other people with ALS and their loved ones.

My parents and I live very far apart, but we visit as often as possible. Earlier in my disease, our reunions were more normal: catching up, visiting favorite restaurants, hanging out at the bookstore. We did the things we have always done when we got together. Now, one year after being diagnosed and two years into this disease, it’s getting harder to forget I am sick.

From One Caregiver to Another

Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and president emeritus of The ALS Association’s Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.

The ALS Association’s goal in sharing this information here is, through Barbara’s story to 1) show how one family was able to successfully negotiate with their HMO for in-home care payments, and 2) share experiences of caregiving and effective coping strategies – validation of common feelings.

 It should be emphasized that this tells the experiences of one individual at a certain time in her life. Certainly, not all people will have the same situations and experiences that Barbara shares and not everyone will and/or would develop the same opinions that Barbara has.

Excerpts from Barbara Dickinson’s messages

“My name is Barbara Dickinson. I’m the trustee of The ALS Association Rhode Island Chapter and also a national trustee of The ALS Association. I got involved with ALS because my husband was diagnosed nine years ago with the disease. We made some decisions in the course of his disease that has allowed him to have a quality of life that I would hope more patients with ALS would be able to achieve, and that’s what I want to talk to you about today.