4 posts tagged “2018 Team of Advisors”

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

Posted 12 months ago 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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2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul

Posted July 17th, 2018 by

Last month, Rich and Paul from this year’s Team of Advisors attended the 2018 National ALS Advocacy Conference in Washington D.C. to learn about the latest ALS research, network, and meet with members of congress on Capitol Hill. Just over 600 people attended the event, including 100+ pALS and 240 first-time participants.

The event started on Sunday with opening remarks followed by an afternoon session, reception, networking dinner and entertainment. Paul and Rich had the opportunity to share with pALS about PatientsLikeMe. Read on to learn how it went and what they accomplished.

(front row: Holly Crowder, Stacy Crowder, Kathy Tavano, Team of Advisors member Paul and Tanner Hockinsmith from the ALSA; back row: Stephen Reynolds from Senator Cronyn’s office)

Day 2: Research & Policy

  • Opportunities to participate in research: Rich (and other participants) gave saliva samples to the Centers for Disease Control (CDC) and blood to the National Institutes on Health (NIH).
  • Interview with Rich: Rich spoke about the ALS Registry Taskforce that exists to brainstorm and come together to find ways to increase participation.
  • Public Policy sessions: These sessions included time to prepare for the visit to Capitol Hill, a Congressional Panel with bipartisan Congressional staff and remarks from US Senator Bill Cassidy.
  • Interview with Pat Quinn: Pat Quinn, the Ice Bucket Challenge co-founder spoke about a new voice generating software and platform.
  • Research panel: Lucie Brujin, John Landers and Tody Ferguson held a panel discussion on where we are in ALS research, and what is coming in the pipeline.
  • Closing remarks/strategy: Following the closing remarks, attendees had time to strategize with state chapters. Paul and Rich’s chapter (the ALS Association FL Chapter) was represented by 17 people including:
  • 2 pALS, caregivers, family members, friends, the President of the ALS Association chapter in Florida and 3 researchers

 

(Tim Cummings (surviving spouse of ALS patient, former board president of ALS association FL chapter), Dorothy Marsh (who lost her sister to ALS), Martin Rivera (Rep. Darren Soto’s office), Team of Advisors member Rich, Talitha, and Rich’s daughter, Gigi.)

Day 3: To the Hill

Rich, Paul and the other members of their chapter headed to Capitol Hill to meet with senators, representatives and their staff.

Their mission?

The Taskforce of advocates asked U.S. Senators and Representatives to gain support for:

  1. The senate and house bills dealing with the ALS Disability Assurance Act. Passage of this bill would eliminate the 5-month waiting period for Medicare.
  2. Continued funding $10M for Department of Defense (DOD) ALS research
  3. CDC funding $10M for the National ALS Registry
  4. Continued NIH funding for $39.3B
  5. Support for Steve Gleason to receive the Medal of Freedom award

They met with congressmen and their staff including:

  • The offices of Senators Marco Rubio and Bill Nelson and Representatives Darren Soto, Al Lawson, John Rutherford and Ted Yoho.

Were they successful?

“There is no way to know for sure but based on questions asked by the people we met with and the notes taken we felt our mission was successful,” Paul said.

While getting support for “Right to Try” wasn’t officially part of the mission, they did discuss the topic with many of the staffers they met. Representatives Lawson, Rutherford and Yoho all voted in favor of the legislation a few weeks later.

Going forward, Rich and Paul plan to follow up with the congressmen (and their staff) to make sure their asks are met.

Want to get involved with ALS advocacy? On PatientsLikeMe, more than nearly 700 members of your community say they’re interested in advocacy — Join today to connect with others who want to make a difference.

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