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 Stories Page 2

Possible Recipients of Christopher Reeves Foundation Grant Services

Amy DeKiser Pic

Amy DeKeyser

Amy has cerebral palsy and she is losing her vision.

She has a social support dog named Gunther. The 8-year-old lab border collie-mix knows how to get help for his mistress. He senses when she’s anxious and calms her down. He’s intuitive to her needs.

She volunteers at a local nursing home, which she enjoys very much. On Memorial Day weekend of this year, Amy is excited to participate in Special Olympic games for those with disabilities.

“I don’t have a lot of technology yet.” Amy hopes this will soon change. She has a computer with a keyboard with large letters and a 37-inch computer monitor. She has difficulty using computer voice programs such as Dragon and Jaws.

Some challenges Amy faces on a regular basis are common for those with assistance dogs. People assume Gunther is a pet and not a service animal. They will come up to him and pet him. Amy also finds it frustrating when drivers park their vehicles in handicap parking spaces when they apparently are not disabled.

To improve her independence, Amy needs a plethora of technology. She’d love to receive an iPhone and learn how to use it on her own. With all the apps available for this device, Amy could significantly grow in her independence by using navigation apps; those for reading money, playing games, reading books, listening to music and so much more. The world would virtually open up for her. Amazon’s Alexa would give her the ability to order products and do tasks around her home, hands-free, by herself instead of relying on someone to assist her.

Since she’s losing her vision, Amy is 100% dependent on those around her. If she were fortunate enough to receive these assistive devices and tools, Amy would become a much more independent person.

 

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Roger Long

Roger worked as a general electrician before a motorcycle accident claimed his sight in 2001. He broke his neck and became paralyzed from the neck down.

Starting in 2005, for years, Roger collected signatures for his state representative to help promote the use of stem cell research to aid those with spinal cord injuries. He’s well-aware of what good the Christopher Reeves Foundation continues to do for those affected by this disability.

He relies on the assistance of caregivers for seven hours each day. Being paralyzed from the neck down, he must be aided in the smallest, simplest of daily chores. His caregivers do everything from giving him bed baths to stretching his limbs and muscles, dressing him and providing personal hygiene and household chores and shopping.

Since Roger can’t use his hands, he is unable to turn on a light or change the temperature on a thermosstat. His independence and daily life would be significantly improved if he could receive voice-activated technology that could accomplish these small tasks that one can do with their hands.

Roger once had a computer with dragon software (software that would operate by voice command). He’d love to receive another computer with this software, but as he said, “they are quite costly.”

Roger loves to learn. As a musician, he uses the free videos found on YouTube to teach him the intricacies of harmonica playing. His daily life and overall independence would be immensely improved if he were fortunate enough to receive this technology. Roger is an advocate for those with spinal cord injuries. He would seek out online courses in anthropology, psychology, sociology and political science to not only expand his knowledge base but to take his message to the public as a public speaker. His platform would be centered around advocating for those with spinal cord injuries.

That’s not all he hopes to achieve. Roger loves the outdoors and the water. He intends to form a non-profit that would allow those in wheelchairs to take boat rides. After obtaining the necessary licenses, he wishes to locate a pontoon boat that is either wheelchair accessible or make it accessible to provide those in wheelchairs the opportunity to experience the water and great outdoors.

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Eugene Calvin

This interview was conducted with Eugene with the help of his wife, and caregiver, Melanie.

Eugene has a blood disease. He was involved in a car wreck where he suffered a closed head injury. This affected his sight, speech and mobility. His wife, Melanie, is his primary caregiver.

Eugene uses a cell phone, a manual clock and a reader. Some barriers he experiences involve being unable to get out of bed or a chair to turn a light on or change the temperature in the room.

His life would be significantly improved if he could receive voice-activated or smart technology that could turn a light on or off and raise or lower the temperature.

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Gina DeMagdio

 

Gina DeMagdio Pic

Gina developed Multiple Sclerosis (MS) when she was 15; she lost sight in her left eye. Optic neuritis is a symptom of MS. This affects the optic nerve. Her uncle also has MS but at first, her doctors didn’t think she had the disease.

She had IV steroid treatments in the hopes it would restore her vision. Sadly, it did not return. Between her junior and senior year in high school, Gina lost the entire movement on the left side of her body.

She was given a treatment called plasmapheresis which stabilized her blood. She walked out of the hospital two weeks later. Gina credits her neurologist with not giving up on her.

Recently, Gina graduated in December 2017 from Wayne State University in Detroit with a bachelor’s degree in Social Work. She’s still undecided whether she is going to pursue an additional Masters degree by participating in an accelerated program or go part-time and work part-time.

Gina has severe neuropathy; she is unable to use her hands to type or use a computer. She depends on voice-activated technology such as Jaws, J-Say, and Dragon. She loves her iPhone and she recently purchased Alexa from Amazon.

She lives with her long-time boyfriend who is also blind. Gina receives assistance for twenty hours each week. She needs support with household chores and shopping.

A massive barrier gina contends with on a daily basis is her balance. Because of her MS, she relies on a walker while out in public. She also needs sighted assistance to guide her.

As mentioned previously, she can’t use her hands. Gina uses voice-activated technology for working online and when she had papers to write for her courses. But she’d really like to receive a device that can help her open cans and jars. And a smart thermos stat would be wonderful to receive as well. She has an older one that isn’t digital.

Gina is still undecided about her future. She knows attending a Master’s program in social work could be taxing on her health; stress exacerbates her MS which can be brought on by fatigue. If she were to get a job, she’d have to worry about transportation. Most office jobs require employees have a working vehicle. Gina could do well with a self-driving car. She could also benefit from a computer with voice-activated technology installed.

Gina knows her life and independence would greatly be improved if she were to gain the ownership of these devices and technologies. With her specific situation, she tackles obstacles as they make themselves known. But with the proper technology at her job, for instance, she would have the capability to record case notes and client in-take forms without sighted help.

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