Publications and Videos

Video

Maintaining Your Quality of Life:
A Patient's Perspective

This twenty-two minute video was created and narrated by a women living with ALS (Toni Redmond), and covers the following topics:

• Life before ALS
• Mobility
• Communication
• Eating
• Personal Hygiene
• Respiratory Assistance

While it is not intended to replace medical or professional advice, it is available as a tool to assist in maintaining one's quality of life through the course of this illness. We hope all who view this will gain some insight on how to better cope through living with ALS and honor Toni's humor, optimism and bravery while she endured this journey.

For a brief clip of this video, click here. To view a video clip of how a person with ALS copes with mealtimes, click here.

Copies may be purchased for a nominal fee, plus shipping. Please click here to download the order form (Note: the form requires Adobe Reader® software - see link below.)

To view the links below, you must use Adobe Reader® software. If you do not have this software on your computer, click the image below to download it from Adobe.com website. If you experience problems opening the files, place your cursor over the file link, click the right mouse button, then choose"Save Target As..." or "Save Link Target As..."

Publications

Featured Book: I Remember Running, The Year I Got Everything I Ever Wanted—and ALS, by Darcy Wakefield

Darcy Wakefield was a single, 33-year-old, athletic, workaholic English professor, a vegetarian who had never had a serious health problem or injury. Then she was diagnosed with ALS, and her world turned upside down. I Remember Running is Darcy's story of change and loss and challenges during her first year with ALS, as she struggles to make sense of her diagnosis and redefine herself in the face of this terminal illness. With extraordinary courage, wit, and eloquence, Darcy shares what she calls her "fast-forward" life-a life in which she applies for disability, leaves her job, and plans her own funeral, as well as meets and moves in with her true love, buys a house, and gives birth to her first child in less time than it takes most of us to accomplish even one of these things. Beautifully written and wholly inspiring, I Remember Running proves that it is possible to live a rich, meaningful life after being diagnosed with a terminal illness, and will move readers to see the world in a different light.

Darcy Wakefield, formerly an English professor at Southern Maine Community College, received an MFA in writing from Emerson College as well as an MA in American Studies from SUNY/Buffalo and a BA from Smith College. Diagnosed with ALS in 2003, Wakefield lives with her true love, Dr. Steve Stout, and their baby Sam, in Cape Elizabeth, Maine.

Other Publications

The following publications are available in hard copy form through our resource library. To request a copy by mail, please contact Kristen "Kris" Bregler at the Chapter office.

• ALS & The ALS Association Brochure
• Facts About ALS Quarter-fold Pamphlet
• Basic Home Care Booklet
• Maintaining Good Nutrition Booklet
• Caregiving… when a loved one has ALS Booklet
• Tissue Bank Packet (Brochure and Listing)
• Living With ALS Manual Order Form
  • Full Set of Living With ALS Manuals
  • Living With ALS Manuals #1
  • Living With ALS Manuals #2
  • Living With ALS Manuals #3
  • Living With ALS Manuals #4
  • Living With ALS Manuals #5
  • Living With ALS Manuals #6
• Patients Bill of Rights Document
• Research Brochure - Portfolio
• A Reason for Hope magazine
• ALS Patient Identification Card:
  wallet size (designed for people with speech difficulties)
• Post-doctoral Fellowship tri-fold brochure
• The Dysphagia Cookbook

Several of the books listed below are available through our chapter library. Please call the office at (866) 257-6663 for titles and availability.

Others may be available through your local library, larger bookstores, and online through merchants such as Amazon.com and BarnesandNoble.com. Please note that, because book names are not always unique, you may have to search by author name to find the correct title.

• This Far and No More by Andrew Malcolm
• Tuesdays with Morrie by Mitch Albom
• Letting Go by Morrie Schwartz
• Facing the Lion: How to Cope with Misunderstanding, Injustice, and Suffering by Pamela Vack
• Cries of the Silent by Evelyn Bell (published by the ALS Society of Alberta)
• On Eagle's Wings by Connie Bobo
• Terminally Sane by Jay Rouelle
• Charlie's Victory by Charlie Wedemeyer
• Journeys with ALS compiled by David Feigenbaum
• Tales From The Bed, a memoir of Jenifer Estess as told to Valerie Estess