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Take Action: For Many Patients and Their Families, Advocacy is About Helping Themselves and Others— and They Say Anyone Can Do It
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| Educate - Learn all you can |
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| Talk to others about Parkinson's disease |
- Feb 03 2016
By Frederick Kunkle
Karen
J. Smith started a support group for people with Parkinson's disease
after she was diagnosed with the condition at age 42. When Michael Ellenbogen
learned he had an early-onset form of dementia at
49, he used social media to build a community of people interested in
finding a cure for Alzheimer's disease. After Catherine (Cathy)
DeCreszenzo's husband, Joe, was diagnosed with spinocerebellar ataxia, a
rare neurodegenerative disease that
causes spastic body movements and problems with balance, she started educating
herself about the disorder so she could help him and others. And since her
diagnosis of amyotrophic lateral sclerosis (ALS) 19 years ago, Catherine
G. Wolf has initiated research projects and fought on behalf of people with
disabilities.
These
four people, and hundreds like them, choose to cope with their diseases by
taking action. Whether they're raising awareness or money, participating
in clinical trials, providing
support, or pressuring politicians, advocates help bring about change that
could benefit themselves, their families, and perhaps thousands of other
people, now and in the future. Their firsthand experience of living with a
neurologic condition gives them a unique perspective.
“Our
whole mantra is we need people with the disease out in front,” says Veronica
“Ronnie” Todaro, M.P.H., Vice President of National Programs at the Parkinson's
Disease Foundation. “It's a core philosophy of the foundation.”
For
those who feel called to do more but don't know where to start, we asked
patients and their families to trace their paths to advocacy.
START
WITH YOURSELF
Advocacy
begins at home, says Todaro. “People who make
the best advocates are those who have advocated for themselves first,” she
says. “It's hard to help others without your own plan in place.” The first step
is to be as educated about your disease as possible. Then work with your doctor
and support team to come up with treatment and care that ensures your quality
of life. Don't be afraid to ask your doctor or medical team questions, and
persist until you get answers, she says.
That
was an important lesson for the DeCreszenzos. In their search for the
right neurologist for
Joe, they were uncompromising about finding an expert who was committed to
fighting on their behalf. They chose Joseph M. Savitt, M.D., Ph.D., a
neurologist at Johns Hopkins University in Baltimore, for his warm demeanor and
willingness to answer questions at any time without sugarcoating, says Cathy.
FIND
STRENGTH IN NUMBERS
By
joining a support group, people often find the courage to speak louder for
themselves and others. It emboldened the DeCreszenzos to start their own
support group in Newark, DE. When Joe was first diagnosed with ataxia, the
couple traveled to Chesapeake, MD, to join a group sponsored by the National
Ataxia Foundation. In the early days, the group was especially important
because ataxia is extremely rare, Cathy says. Only about 150,000 people in the
United States are known to have the condition. Just talking with others
fighting a similar disease was helpful, she says. “They tell you about their
challenges, you tell them about yours. You compare notes and see if you can
help each other.”
Smith,
56, who was diagnosed with Parkinson's disease about 14 years ago after she
noticed a tremor in her
left ring finger, kept quiet about her disease initially. “I didn't want people
to know I had it,” she says. Her advocacy work began when she formed a support
group. From there she established a walk to raise awareness about the disease.
She took out books at her local library and asked librarians to put up displays
about the disorder. She signed up for newsletters and attended conferences when
she could, and she even visited the US Food and Drug Administration (FDA) to
learn more about the drug approval process. She joined clinical trials. With every step she
became more confident and less depressed, she says. “By becoming involved, I
think I'm making a difference in people's lives. I can say, ‘I know what you're
going through. You'll make it.’”
RAISE
YOUR HAND
Volunteering
was another crucial step on the DeCreszenzos' path to advocacy. Together, Joe
and Cathy have organized fundraisers, including one in September that raised
more than $10,000 for research. Joe, 67, now serves on the National Ataxia
Foundation's board of directors. Along the way, Cathy, 60, says she discovered
new strengths. “Asking for money comes very easily to me because I know it's
needed,” she admits. “Being an advocate helps me deal with what's happening to
my family. Every year I get stronger.” The cause has taken on new urgency for
the DeCreszenzos since learning that Joe's ataxia is hereditary and one of
their daughters has tested positive for the disorder.
JOIN
A TRIAL
Besides
contributing to research that could lead to a cure or better treatments,
participating in a clinical study gives advocates credibility to encourage
others to join. The Parkinson's Advocates in Research program, created by
Todaro, looks for individuals who have participated in studies. It has trained
more than 230 people with Parkinson's disease or their caregivers on how to
guide researchers and find ways to work together in the search for a cure. Many
advocates who work with the foundation have been in dozens of clinical trials.
“It's taking control of your disease,” Todaro says. “It's saying, ‘I can play a
role in making things better.’”
If
you participate in a clinical trial, use that opportunity to establish a
relationship with the scientists, investigators, and institutions involved.
These people are often in the best position to effect change. Being able to
communicate concerns also helps ensure that studies focus on the right issues
and that researchers design them to be effective and humane, Todaro says. In
September, for example, Parkinson's disease advocates met with the FDA to
highlight symptoms and side effects of
the disease for which no treatments currently exist, she says.
GET
TRAINING
To
hone your skills as an advocate, reach out to the national organization for
your disorder. The Parkinson's Disease Foundation, for example, has a
nationwide program, the People with Parkinson's Advisory Council (PPAC), to
identify advocates and leaders, evaluate their abilities and talents, and
provide further education and training to support their public advocacy. The
council's 14 members serve as advisors on the foundation's research, education,
and advocacy programs.
GO
PUBLIC
For
some, the logical extension of their advocacy is speaking to the public, either
through media interviews, public forums, or in front of Congress. That's where
Ellenbogen, 57, ended up after first establishing a presence on LinkedIn, where
he ultimately connected with 6,000 people who could help him understand
Alzheimer's or work toward a cure. Ellenbogen, who has lived with the disease
for eight years, has worked hard to ensure that the testimony of people with
dementia is included in public forums and panels.
Ellenbogen's
dedication to speaking out earned him an invitation to the World Health
Organization forum in Geneva in March 2015; he was the only person with
dementia attending who was not there as part of an organization. His letters
have been included in the Congressional Record, and he received an appointment
to the Pennsylvania Alzheimer's Disease State Planning Committee. “You're going
to get a lot of people telling you ‘no’ and ‘it can't be done.’ You go around
those people. You find a way. Don't accept it when someone tells you it can't
be done,” he says.
BUILD
MOMENTUM
When
his mother-in-law was diagnosed with Alzheimer's disease, George Vradenburg,
former chief counsel for AOL, started by educating himself about the disease.
Then he hosted a gala dinner for the local Washington, DC, chapter of the Alzheimer's
Association. As the circle of invitations grew wider, the gala became national.
Vradenburg, who was accustomed to moving among the business and political elite
of DC, teamed up with former House speaker Newt Gingrich to create a national
Alzheimer's study group. Established with the bipartisan support of the
Congressional Task Force on Alzheimer's Disease, the group, which included
former Supreme Court Justice Sandra Day O'Connor, was charged with developing a
coordinated national plan to fight the disease.
Still
frustrated that not enough was being done, Vradenburg and his wife, Trish, a
writer and former journalist, formed USAgainstAlzheimer's in 2010. The
philanthropic group has pushed the federal government to adopt timetables for
finding a cure or better treatments and has set its sights on accelerating the
drug approval process.
ESTABLISH
A CHARITY
The
impulse to start a foundation or charity is often strong after a devastating
diagnosis or event, but Vradenburg suggests that you first think about what you
hope to accomplish. Large donors might fund a building for research or back a
team of researchers. Others might choose to focus on caregiving, which could
mean donating to a specific facility or to research on caregiving, such as
using music to alleviate the symptoms of dementia. “Find your purpose. It's not
enough to say, ‘I want to cure Alzheimer's,’” Vradenburg says. “Of course you
do. Focus on a piece of the issue that matches your budget and fits your
passion and where you can have the biggest impact.”
PLAY
TO YOUR STRENGTHS
Wolf,
who was at the top of her field in research psychology when she was diagnosed
with ALS in 1996, says the will to keep going helped in her legal fight against
an insurer that denied her home care 10 years ago, and it's what recently drove
her to help revamp the Westchester Library System's website so it's easier for
people with disabilities to use. An expert on interaction between humans and
technology—she once worked at IBM's Thomas J. Watson Research Center—Wolf, now
68, continues to conduct research on how people with disabilities interact with
computers. She also writes articles about living with ALS and posts disability
news to her Facebook page. She types by raising and lowering her eyebrows to
trigger a computer switch inside a headband.
EVERY
STEP COUNTS
Advocacy
isn't just about grand gestures. It can be as straightforward as ensuring that
the local library has displays or pamphlets about your disease. Or trying to
establish a commemorative month for a particular disorder. Or signing an email
petition.
As
Ellenbogen says, anyone can be an advocate. “If you write a letter to Congress
once in a while or reach out to people in some small way to change attitudes,
you're still being an advocate,” he says. Vradenburg agrees. Just the act of
acknowledging the disease, which isn't always easy given the stigma associated
with some neurologic conditions, is a big and brave first step, he says.
“Telling your story has an effect on the person hearing that story.”
It
also has an effect on the person telling the story, says Smith. “I wasn't an
advocate on day one or day 100. It took me several years. Now it's what makes
my life meaningful. The day I stay home is the beginning of the end. I'll rest
when I can't get out of bed.”
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