5 posts tagged “self-advocate”

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

Posted 2 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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How to prepare for a doctor’s appointment: 7 tips from member Cathy

Posted 5 months ago by

Ever feel confused or overwhelmed after a doctor’s appointment? Forget to ask important questions or bring up new symptoms? Covering all of your concerns in a 30-minute appointment can be tricky. MS community member Cathy can relate — read on to see how she’s learned to make the most of her appointments and check out her 7 tips for getting the answers she needs.

In 1986 I noticed something was awry when my legs were completely numb, my arms were weak, and I was always physically exhausted. I felt scared, isolated and confused. I scheduled an appointment with my internist who referred me to a neurologist. After a spinal tap and CT scan the tests were conclusive. I had multiple sclerosis.

I was happy to have a name for what I had but that didn’t diminish my confusion. I decided my neurologist would lighten my emotional load at my next appointment and, like Scarlett O’Hara, I’d think about it all another day. In hindsight I realize this was not a good plan.

Learning how to self-advocate

One of the most important lessons I learned over the last three decades is you must always advocate for your health instead of letting others do it for you. Self-advocacy must be our number one priority. In today’s health care climate, when doctors are often inundated and pressed for time, it’s crucial to get answers to our questions during the thirty minutes or so of medical appointments.

As Megan Weigel, a Doctor of Nursing and the president of the International Organization of Multiple Sclerosis Nurses explains:

“The advice I give about preparing for a doctor’s appointment is to think about your goals for the visit and consider that your healthcare provider may have different goals. For example, you may want to talk about your top three most bothersome symptoms, and your provider may need to talk about labs…or other tests that you need. I usually tell patients to have a list of questions that they want to ask or topics that they want to discuss. I also tell them to come prepared to take notes…and to ask for what you need, including written instructions or what to follow up on in the office.”

Preparing for your next doctor’s appointment:

To avoid feeling anxious, overwhelmed or worried about doctor appointments I created a list of reminders I use so I will be fully prepared for my next visit:

  • Organize your medical history by having copies of medical records, x-rays, scans or other lab tests and the names/phone numbers of previous doctors. You can have these sent directly to your doctor from your previous doctor (you will first need to sign a consent form) either before your appointment or bring them with you.
  • Keep a journal of your symptoms. It does’t need to be elaborate, just a word or two to help you remember.
  • Bring a list of questions with you. I keep a piece of paper on my nightstand to write down questions and concerns I have. Do not leave your appointment until everything on your list is addressed.
  • Ask a family member or friend to come with you to help explain your symptoms, or to be a good listener and take notes.
  • Be specific about your symptoms, how they affect you and when they happen.
  • Bring a list of any medications and supplements you are taking including dosage and inform the doctor of any allergic reactions to medications.
  • Request a brief verbal summary and follow-up instructions to review what was discussed. If you’re nervous or need extra time to process information this review can be particularly helpful.

Remember that you and your doctor are managing your health as a team. The more prepared you are for your appointment the stronger your team will be!

How do you prepare for a doctor’s appointment? Anything you’d add to Cathy’s list? Join PatientsLikeMe to chime in and get more tips from the community.

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