We have read many, many books on ALS, grieving, coping, caregiving, sprirtuality...and everything else. We are avid readers! Here are some of our favorites:

Living with the End in Mind: A Practical Checklist for Living Life to the Fullest by Embracing Your Mortality

Living with the End in Mind takes a life-affirming look at preparing yourself and your loved ones for the inevitable--whether you are in perfect health or are ill--so you can live life to its fullest.

The inspiring couple who coauthored this book have already garnered widespread media coverage, from 20/20 to The Oprah Winfrey Show. Scott is using many of the ideas and thoughts from this book to form his own legacy project.

Do you ever think what life must be like for the well spouse of someone chronically ill? Strong tells us what it is like to watch her husband become increasingly debilitated by multiple sclerosis, to deal with the financial burden of illness, to realize that their and their children's futures are changed forever. By writing about her experiences and those of others in similar situations she intends to offer support to the well spouse. The personal accounts are interspersed with practical advice about dealing with physicians, handling insurance, and just coping.

Living fully in the face of a debilitating fatal illness is the challenge Simmons, then an associate professor of English at Lake Forest College in Illinois, faced when he was told in 1993 he had ALS (Lou Gehrig's disease) and had less than five years to live. As his illness progressed, a wheelchair-bound Simmons moved with his wife and two children to southern New Hampshire, near the rugged mountains he once had climbed. Writing in his cabin in view of an old dump, Simmons describes the wonders of nature remembered and still visible from his abode. He tells of his search for life's meaning in a variety of religious and secular texts, among them the story of Jesus, the philosophy of Zen, Sufi and Buddhist masters, medieval Christian mystics, Emerson's essays and the poetry of Yeats.

This highly original first novel won the largest advance San Francisco-based MacAdam/Cage had ever paid, and it was money well spent. Niffenegger has written a soaring love story illuminated by dozens of finely observed details and scenes, and one that skates nimbly around a huge conundrum at the heart of the book: Henry De Tamble, a rather dashing librarian at the famous Newberry Library in Chicago, finds himself unavoidably whisked around in time. He disappears from a scene in, say, 1998 to find himself suddenly, usually without his clothes, which mysteriously disappear in transit, at an entirely different place 10 years earlier-or later. During one of these migrations, he drops in on beautiful teenage Clare Abshire, an heiress in a large house on the nearby Michigan peninsula, and a lifelong passion is born.

Scott and I both read and loved this book. The similarity of this love story to the life of a spouse with ALS, trapped in a body that can't be controlled, and living with a spouse who in all practical ways is moving forward with life is thought provoking. Certainly not a fantasy or science fiction novel, this is a love story about two people trying to live their lives together while they are continually and constantly torn apart.

Taking on responsibility for short or long-term care for the seriously ill can be overwhelming and confusing. Detailing their personal experience with a dying friend, the authors demonstrate how the aphorism "many hands make light work" holds true. By developing "caring networks," the work is spread among friends, neighbors, and family members, alleviating stress on the primary caregiver and providing peace of mind to the patient. Part case study, part how-to, this book includes sample forms and checklists, allowing readers to use it as a springboard to create their own group and providing practical advice and reassurance.

Share the Care is a program developed for helping friends and families organize a group to care for someone who is seriously ill. Scott's godmother Arla and her church group created a group like this for Scott. If you are interested in being a part of our group, please join.

Note: Some of these books are out of print. You may be able to find them at your local library or buy a used copy online at Amazon.com. I've included links to purchase the books from Amazon.com for your convenience. Books purchased through these links help pay for the costs associated with our website.

Resources

We attend the MDA sponsored Fairview University ALS support group led by MDA and ALSA at the University of Minnesota. Support Group meets monthly on the second Tuesday of each month. The meeting runs from 12:30 p.m. to 2:30 P.M. and is held in the Phillips Wangensteen Building (12th Floor, Room 109). The group is open to all ALS patients, families and friends. For more information contact Kelly Schuna at 952-832-5517.

Our friend Tony Ferguson wrote an excellent Commentary on PEGS, PALS and Caregivers regarding his experience with feeding tube decision making, placement, use, care, feeding, and replacement.

We have used Simon Delivers for grocery delivery. Their online ordering is super easy and the delivery guys are really nice and bring the bags right in your house for you. Sure beats spending two hours at the grocery store, pushing a heavy cart, waiting in line, etc. Here's a coupon for $10 off your first order.

Tips for meeting, writing, or speaking about a person with a disability, provided by Courage Center.

Patients Like Me is a new system of medical care for ALS patients, that allows you to create a profile and compare your progression and treatments with other ALS patients. Scott has found this website to be a major factor in communicating with and finding out about what treatments are working for other ALS patients with similar history and disease progression.

Organizations

The ALS Therapy Development Institute is a nonprofit biotechnology company discovering treatments for patients alive today. Their approach combines the power of a nonprofit mission with the best practices of a for-profit biotechnology company: rigorous, open-minded research and proven drug development techniques. ALS TDI also offers the ALS Research 101 course for patients, caregivers, and families. We found this course imperative in our initial understanding of ALS and the current research.

The Muscular Dystrophy Association is the world leader among voluntary agencies in funding amyotrophic lateral sclerosis (ALS) research. The University of Minnesota ALS clinic is funded in part by the Muscular Dystrophy Association. The MDA has also partnered with Augie's Quest to fund ALS TDI with a historic $18 Million over 3 years.

The ALS Association is a not-for-profit voluntary health agency dedicated to the fight against ALS, whose mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.