Source: http://www.stltoday.com/stltoday/news/stories.nsf/sciencemedicine/story/C04A060057504FD5862575140014B6C3?OpenDocument

Disabled St. Louis County woman lives on own with help from Paraquad

Nov. 26, 2008--Emma Perry (left), 57, checks her e-mail with help from her caregiver Diane Walsh Wednesday at her home in Oakville, Mo. (Whitney Curtis)

By Greg Jonsson

ST. LOUIS POST-DISPATCH

12/03/2008


Emma Perry didn't want to go to a nursing home, but some good did come from the move.

A neurologist diagnosed the degenerative nerve disease that she'd been dealing with since childhood and she was told she might be able to return home after a few months of rehab.

Options with family members were limited, she said, because they thought she needed the care of a nursing home or they had already helped care for her for years.

When she left the rehab center, she didn't go home but instead to another nursing home. She was 53 years old.

 

"It made me feel terrible," Perry said. "I didn't want to be there. They're waiting to die, and I wasn't waiting to die. I wanted to do more things."

Five long years later, Perry lives in her own apartment in south St. Louis County. She still faces some challenges but was able to move out of the nursing home with the help of Paraquad, a St. Louis nonprofit that assists people with disabilities. Every year, Paraquad helps about 15 people transition out of nursing homes.

Perry said the organization has given her another chance to live her life.

"I'm a different person than I was then," said Perry. "I have more hope and I have more help. There are more opportunities for me now than there ever have been in my life."

MYSTERIOUS CONDITION

Perry, now 57, started having problems with her balance in her early teens, but doctors thought maybe she was just going through a clumsy stage. By high school, she had difficulty walking in a straight line. Doctors had only guesses to explain her symptoms. Multiple sclerosis? The effects of an illness or fever as a child?

Perry moved on with her life without answers. She got married. Later, pregnant with the first of her two daughters, she started using a wheelchair because she was concerned she might fall and hurt the baby. She's been using one ever since.

She and her husband raised their children. But her condition slowly deteriorated. Financial and job pressures added stress to her marriage, she said. Shortly after she moved to the nursing home in 2003, they divorced.

There she was diagnosed with Friedreich's ataxia, a genetic disorder that causes muscle weakness and loss of balance, among other symptoms.

While at the nursing home, she spent most of her time away from it.

"I made lots of friends there, but I didn't like living in the nursing home," she said. "I would spend hours away from the nursing home, anything I could do to get away."

She'd use Call-A-Ride and spend the day at the Zoo, the Botanical Garden, volunteering at the Humane Society.

Soon she sought help from Paraquad in getting out of the nursing home not just for the day, but for good.

"I wanted to be independent," Perry said. "I wanted to eat when I wanted to eat and what I wanted to eat. I just wanted to be my own boss."

'YOU CAN DO IT'

Lisa Walsh, a transition specialist for Paraquad, met with Perry at the nursing home to figure out Perry's needs and how to meet them in her own home.

Paraquad works not by doing things for the people it helps, but by empowering them to do things for themselves, Walsh said. Clients are encouraged to make their own phone calls, fill out their own applications and set their own appointments, with assistance if needed, partly because those are the kinds of challenges they will face when they live independently.

"We want them to own what's going on in their lives," Walsh said.

It took nearly two years to work up the waiting list for an accessible apartment in south St. Louis County and work with Paraquad to ensure she was ready for independent living, but Perry moved into her new place earlier this year.

"I had all my ducks lined up, and (Paraquad staffers) were always right there," she said. "They kept telling me, 'You can do it,' because there were times I was so depressed."

It's taken her some time to make her place homey, with Beanie Babies on the back of the couch expressing her love for animals, but Perry is enjoying her independence.

"I can eat when I want to eat," Perry said. "I can shop for myself. I can make my own decisions."

ON HER OWN

Perry considers her new home her second start. She's active with her church and wants to hold a job for the first time in her life. First it might be something simple, like a greeter at Wal-Mart. But she hopes to one day become a biblical counselor. It's important that she has goals and the belief she can attain them, she said.

"It's going to take time," she said. "But anything beats being in the nursing home."

She also wants to work with Paraquad to help mentor others.

"She will be an awesome advocate to a peer because of her level of needs," Walsh said. "A lot of people are afraid of leaving nursing homes because of their level of need, but she shows what is possible."

gjonsson@... | 314-340-8253

The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.

The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.

Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:

1) Gene Therapy for Friedreich's Ataxia research project:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.

2) Frataxin delivery research project:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.

The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.

 

 

Go to top