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Entries in Lou Gehrig's Disease (2)

Tuesday
Mar122013

Writer Diagnosed with ALS Taps Out Book with Thumb

Photo courtesy the Spencer-Wendel family(NEW YORK) -- Susan Spencer-Wendel only Googled ALS once.  And then never again.

Instead of focusing on the debilitating disease with which she was diagnosed in the summer of 2011 at the age of 45, the former Palm Beach Post court reporter set out on a year-long journey of joyous living.

The year included a special trip with each of her three children, discovering her birth parents, trekking to the Yukon to see the auroras, tattooed permanent makeup and supervising the building of a tiki hut in her Florida backyard.

Spencer-Wendel's story is chronicled in her book, Until I Say Good-Bye: My Year of Living With Joy, available on Tuesday.  The book was, in large part, tapped out with Spencer-Wendel's right thumb on her iPhone as she lost the ability to use her hands.

Spencer-Wendel, 46, wrote the book as a gift to her children, but singled out the most important message she wants readers to take away from it.

"Live with joy no matter what!  It is possible," Spencer-Wendel wrote to ABC News in an email.

Emails from her iPhone end with, "Sent from my iPhone. Thank God for technology."

ALS, amyotrophic lateral sclerosis, is more commonly known as Lou Gehrig's disease.  It's a disease that affects the nerve cells in the brain and spinal cord.  As the nerve cells die, messages cannot be sent to the muscles, which slowly leads to weakening and the inability to move.  Patients often die within three to five years of diagnosis.

"I can't fight what is happening to me," Spencer-Wendel wrote in the book.  "There is no cure for ALS."

When Spencer-Wendel suspected she had ALS, she considered hiring a hit man to murder her.

"I had sat in court with hit men many times," she wrote.  "I was uniquely qualified for a premeditated murder -- of myself."

But she ditched the idea:  "Dumb idea.  Messy.  Awful."  She also bought two books on suicide, but never read them and knew she could not do that to her family.

Despite her honest telling of some of her darkest moments, her joyful stories far outnumber the sad ones.

After being formally diagnosed in June 2011, she said she knew she had at last one more year of good health.  Sitting in a Burger King parking lot with her husband John who "can eat at any time," she decided to make the most of her year.

"To take the trips I'd longed to take and experience each pleasure I'd longed for as well.  To organize what I was leaving behind.  To plant a garden of memories for my family to bloom in their futures," she wrote.  "Lou Gehrig was an athlete.  ALS took his talent immediately.  But I was a writer.  ALS could curl my fingers and weaken my body, but it could not take my talent."

Copyright 2013 ABC News Radio

Friday
Jul062012

Lou Gehrig's Disease: Seth MacFarlane Responds to 'Ted' Backlash

Jason Merritt/Getty Images)(NEW YORK) -- Ted writer Seth MacFarlane is defending a punch line that sparked outrage among people with Lou Gehrig's disease and their supporters.

"ALS is a horrific tragedy for those who suffer from it, and by no means do I or anyone associated with this film have anything but compassion for the individuals afflicted," MacFarlane said in a statement. "However, the joke in the film is made at the expense of our villain, Rex, and not at the expense of those suffering from the disease."

The joke, "From one man to another, I hope you get Lou Gehrig's disease," shocked movie-going patients and advocates, who say it crossed a line.

"I didn't expect to go to a movie and sit with an audience laughing at the expense of people with ALS," said Randy Pipkin, who was diagnosed in 2005. "I think the message this film sends out is a huge slap in the face to people dying from this horrific disease."

Lou Gehrig's disease, also known as ALS, progressively robs people of their ability to move, speak, eat and breathe. There is currently no cure.

The punch line prompted an online petition urging MacFarlane to apologize and donate $200,000 of the movie's proceedings to ALS research.

"The thing that Mr. MacFarlane and others fail to realize is that ALS sufferers are some of the kindest, compassionate, thoughtful, and loving individuals one will ever meet," Bridget Reeves Jeter, whose mother has ALS, wrote in the petition posted at change.org. "Wishing ALS on another individual is really nothing but a foundationless insult, rather than an edgy, humorous scatological quip, as was intended."

But MacFarlane, 38, who is famous for his boundary-pushing humor, argues the "mere mention of any disease should not be cause for ire."

"I lost my mother to cancer, yet there is a joke in the film which contains the word cancer," he said. "I urge analysis of context, lest the 'outrage industry' get the better of us."

Ted scored $54 million at the box office last weekend, and the offensive punch line has been making the rounds on Twitter ever since.

"We just want to stop this alarming trend before it becomes too widespread," Traci Bisson of the ALS Therapy Alliance, a Boston-based advocacy group, said in a statement. "We want to make it clear that ALS, or Lou Gehrig's disease, is not a laughing matter for people and families suffering from this life-threatening illness."

Jeff Lester, a self-professed MacFarlane fan with ALS, says the joke went too far.

"This line from Ted is something that never should have been said much less survived the editing process for a major movie release especially as a punch line for a comedy," Lester wrote in an open letter to MacFarlane and actor Mark Wahlberg, who delivers the line, posted on Facebook. "From one man to another, I hope you or anyone you know or love NEVER GETS Lou Gehrig's disease."

Copyright 2012 ABC News Radio







ABC News Radio