DiversityNursing Blog

GILLIAN MOHNEY

On her 50th birthday, Sandy Oltz sat on the film set of “Still Alice” and listened to actress Julianne Moore speak a line that Oltz, an early onset Alzheimer’s patient, had struggled to write.

“Please do not think I am suffering. I am not suffering,” Moore said as the character of Alice Howland. “I am struggling, struggling to be a part of things, to stay connected to who I once was.”

Playing a woman with early onset Alzheimer's disease, Moore was giving a speech to a fake meeting of the Alzheimer's Association. It's a position that Oltz has been in many times before.

Oltz, a self-described “type-A” person and former nurse, was diagnosed with early onset Alzheimer’s disease at age 47, when she was raising two teenage sons and juggling a high-pressure job.

“There is some family history, but I never really thought that it would be me,” said Oltz of her early diagnosis. "We tried menopause, we tried brain tumor, we thought stroke, seizure. It took about a year to come to Alzheimer’s.”

Months before the “Still Alice” film shoot in New York, Oltz partnered with the cast and crew of the film through the Alzheimer’s Association. She gave tips from her own life about how to cope with Alzheimer's, such as using a highlight to mark text she's reading. The work seems to have paid off with Moore winning a Golden Globe and an Oscar for her role.

"[Moore] would just ask questions like, ‘What does it feel like to have Alzheimer's,'" said Oltz. "I would say, 'Well, it’s like all these words [are here] and you can’t find the right one.'"

After living with the disease for three years, Oltz said she's mostly learned to accept her limitations, but she still worries that her disease will have an impact on how her sons view her.

"I worry ... they’re never going to know how smart I really was," she said. "They see their mom as kind of funny because I have to be."

Oltz said the film was important so that people can understand that it does not just affect the elderly.

“There’s a stigma that they’re grandmas and grandpas, and their life has been lived and they’re done,” she said of stereotypes about Alzheimer patients. “I pray [the film] breaks the stigma.”

Early onset Alzheimer’s disease affects 200,000 people in the U.S., according to the Alzheimer Association. The film “Still Alice” will be released in limited locations this Friday.

Source: http://abcnews.go.com

By LIZ NEPORENT

Just like Luke Skywalker, 7-year-old Liam Porter of Augusta Georgia has been given a brand new arm.

Porter, who was born without the lower part of his left arm, was recently surprised with a prosthetic arm modeled after the Imperial Clone Troopers in Star Wars.

“Liam wants it made clear it is a Clone Trooper not a Storm Trooper arm,” said his mother Ryan Porter.

In the Star Wars movies, Clone Troopers are the good guys and Storm Troopers are evil.

Porter used to have a traditional prosthesis but it was boring and clunky, John Peterson, the limb’s designer said. The boy thinks the new arm is not only “extremely awesome,” it’s lighter and easier to move. It has a clamp on it and a rail system to slide different attachments on and off. As he grows, the arm can be adjusted.

Porter’s space-age appendage was a arranged by E-nable, a global network of volunteers who 3D print mechanical hands and arms for kids in need then give them away for free.

Jon Schull, E-nable’s founder, is also a research scientist at the Rochester Institute of Technology. He said the group pairs each child with a “maker” who takes a basic prosthetic design and customizes it.

Peterson went above and beyond, Schull noted.

“I believe this is the first Clone Trooper arm we’ve done,” Schull said.

The arm took about three months to make and cost about $300, according to Peterson. The price tag for a typical prosthetic arm is upwards of $9,000, Schull pointed out.

In its first year, E-nable has given away more than 700 arms and hands. Members of 501st Georgia Garrison, a group of people who dress up as Storm (and Clone) Troopers, presented Porter with his at a surprise ceremony held at a local movie theater.

“He was actually speechless, which for him is a rarity,” his mom said. “It’s amazing John donated his time and own money to make this happen, just to see the joy on my son’s face.”

Source: http://abcnews.go.com