All about ALS, or Lou Gehrig’s Disease

Learn more about the disease that created the Ice Bucket Challenge, the way it affects the body, and the people who live with it.

 

Tales from the Bed
by Jenifer Estess as told to Valerie Estess

Estess, a NY theater producer, was diagnosed with amyotrophic lateral sclerosis (ALS) in her 30s. Her memoir intersperses details of her disease  with reflections on her family background, her love for her sisters, and her parents’ divorce. She writes about visiting psychic healers and picking out a wheelchair, and describes how she and her sisters convert their childhood dream of starting a film production company into a new mission to support genetic research of ALS and related diseases, with Project A.L.S.

 

 

Lou Gehrig’s Disease Medical Dictionary
edited by James N. Parker and Philip M. Parker

Amyotrophic lateral sclerosis medical dictionary and bibliography, with an annotated research guide to internet references.

 

 

Lou Gehrig: the Luckiest Man
by David A. Adler, illustrated by Terry Widener

This illustrated biography traces the life of the Yankees’ star ballplayer, focusing on his character and his struggle with ALS.

 

 

Tuesdays with Morrie
by Mitch Albom

As a student at Brandeis University in the late 1970s, Albom was especially drawn to his sociology professor, Morris Schwartz. On graduation he vowed to keep in touch with him, which he failed to do until 1994, when he saw a segment about Schwartz on the TV program Nightline, and learned that he had just been diagnosed with Lou Gehrig’s disease.

 

 

 

Jason Becker: Not Dead Yet
DVD [2012]

The year is 1989, and 19-year old Jason Becker from Richmond, California has just been offered the biggest rock guitar job on the planet. He’s on the cover of every guitar magazine and is being hailed by critics as a genius and the next greatest rock guitarist in the world. Jason’s dream will turn into a nightmare when he is diagnosed with Lou Gehrig’s Disease and given just 3-5 years to live. 22 years later, without the ability to move or to speak, Jason is alive and making music with his eyes.

 

 

 

The Killer Within: In the Company of Monsters
by Philip Carlo

The true-crime author turns his attention on a very different type of killer: ALS, an affliction he was diagnosed with in 2005. Carlo holds nothing back in describing his daily struggles being confined to a wheelchair, getting his meals fed to him, and facing some bureaucratic hurdles in trying to obtain a breakthrough drug for his illness.

 

 

 

Until I Say Good-bye
by Susan Spencer-Wendel with Bret Witter

Journalist Spencer-Wendel discovered she was ill when her left hand suddenly became withered. Learning that she has ALS, the 40-something author, blessed with a great reporter job at the Palm Beach Post and loving family, uses benefits from an insurance policy to quit her job and take trips with her family and friends, to have all the amazing experiences she’s put off and create lasting memories.

 

 

 

You’re Not You: a novel
by Michelle Wildgen

When Bec takes a summer job caring for Kate – a young married woman with Lou Gehrig’s disease – it seems likely that Bec’s lost soul will come of age through  contact with Kates’ wisdom and resolve. But when Kate kicks out her cheating husband, Evan, the story becomes clear and determined, daring to spotlight an almost taboo subject: the need for sex among the sick. As Bec takes on more of Evan’s roles, her deep and conflicted feelings for her charge allow the story to navigate the complicated moral territory of  any young spouse’s responsibility to a terminally ill partner.