6 posts tagged “self-advocate”

Advocacy 101: See our new guide!

Posted 10 months ago by

Interested in getting into advocacy for your health condition community this year? Raising your voice to boost awareness about your condition or the reality of being a patient takes courage. Yet it’s pretty simple to get started with advocacy, so together with members of our Team of Advisors (a team of highly active members and advocates in their condition communities), we’ve put together a new guide called “Advocacy 101.” See/expand and print the guide here!

PatientsLikeMe advocacy guide

More than 30,000 PatientsLikeMe members indicate that advocacy is one of their interests on their profile. Join PatientsLikeMe or log in now to find and connect with these members here (filter the list to show others with your same condition using the “Condition” search field in the left-side menu).

Have any advocacy pointers you’d like to add? Add a comment below or log in to share with the community here!


“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

Posted August 30th, 2018 by

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician.

Out with the old

Bernadette lives in remote area in the Great Lakes Region of New York. The first PD symptom she noticed was her handwriting getting small (a common early symptom of PD known as micrographia) — and her first doctor dismissed it as “writer’s cramp.”

When she began having tremors in her hand, she started seeing a neurologist with a strong reputation in Syracuse, about a 40 minute drive from her home.

“He’s very well-respected in the area,” she says. “In fact, a lot of the [other] doctors won’t step on his toes.”

Bernadette was experiencing serious side effects with some of her PD medications — including compulsive gambling out of the blue (a reported side effect of Mirapex) — but her neurologist asked her very few questions about how she was feeling, and never raised the topic of side effects.

“My husband didn’t like him,” Bernadette says of her old doctor. “I didn’t know any better. There were cues I should’ve picked up on long before the 14 years.”

Bernadette got a taste of other Parkinson’s care when she enrolled in PD telemedicine trials at the University of Rochester (U of R), where the staff is “amazing,” she says.

Bernadette says she was experiencing terrible dyskinesia, and a U of R neurologist mentioned that one of her treatments might be a factor (but didn’t suggest altering her treatment without consulting her doc).

She stopped taking the medication without telling her usual neurologist in advance. (“That was my one mistake,” she notes.) But she noticed a major drop in dyskinesia.

“When I told him I didn’t take [the drug] anymore — and why I didn’t take it anymore —he came unglued,” Bernadette says. “Nobody intimidates this little girl, but I was almost in tears.”

In with the new

Fortunately, Bernadette’s husband, Mark, attends doctor’s appointments with her and calmly stepped in when the doctor flipped out.

“Mark said, ‘You’re not going back there,’ and I said, ‘No, I gotta find another doctor,” she says.

After about a month, she landed a new neurologist at U of R. Although Rochester is about an hour and 15 minutes away, the change has been well worth it and the transition was “seamless” in terms of paperwork and insurance, Bernadette says. (Other patients aren’t always so fortunate, when it comes to insurance coverage — see one example here.)

Her new physician is a younger doctor who’s a movement disorder specialist (focused on PD), rather than a general neurologist (treating a wide range of neurological disorders).

“I was leery” at first, Bernadette says. “She wasn’t that old. She wasn’t out of school that long. My husband said, ‘No—take her! She’s young! She’s got fresh ideas!’ I never looked at it that way.”

These days, Bernadette’s doctor visits are pleasant from start to finish, she says, because the entire office staff is friendly and she has more of a dialogue with her doctor. She isn’t afraid to ask questions or discuss her symptoms and side effects.

“She knows what questions to ask someone with Parkinson’s,” Bernadette says of her new doc. “I tell everyone [with PD] that they need to go to a motion specialist.”

Bernadette continues to stay on top of PD research by reading books and articles (which she advises all patients to do), and no longer feels intimidated about raising new ideas, whether in-person or over the online patient portal (something her old doctor didn’t offer).

“I tell people, you have to do it yourself — you have to be an advocate for yourself,” Bernadette says.

Not every doctor and patient will click, she says, especially with such a varied disease as PD (sometimes called a “snowflake disease” because it can affect people so differently).

“You gotta go with your gut. I might like German shepherds and you might like chihuahuas — and there’s nothing wrong with that,” she says. “It’s a personal thing.”

Bernadette — an upbeat jokester — likes how her new doctor can roll with her sense of humor, but also knows when to take her seriously.

“I can be me,” she says.

How’s your relationship with your doctor? Have you ever noticed “red flags” in your care or had to change doctors? Join PatientsLikeMe today to jump into this conversation in the forum. Also, check out our Good Care Checklist, which PatientsLikeMe developed based on recent research with the Robert Wood Johnson Foundation on “good health care” from the patient perspective.

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