self-advocate

Advocacy 101: See our new guide!

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! 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

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 …

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

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 …

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Life-changing second opinion stories: “I decided to get a second and third opinion…”

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle. Extraordinary second opinion stories The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said. PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum. After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected. “My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary …

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How to be your best health advocate

PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your own best health advocate and how you can take charge of your health. Self-advocacy has become a critical part of the doctor-patient relationship. It’s no longer enough for patients to relate their symptoms to their physicians and accept the response. Patients need to ask questions; they must act like detectives solving a mystery in order to find the answers they’re looking for. If you can’t find the answer you need quickly, you may end up shuttling between specialists and wondering if the professionals will ever figure out what ails you. For example, let’s say you’re experiencing digestive issues. You start with your internist and undergo testing, but it’s inconclusive. Your doctor refers you to a gastroenterologist who performs invasive tests that produce a diagnosis. A medication is prescribed and you feel better in a few days. Weeks later your digestive issues return. Again, you call …

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The Patient Voice: Interview with Mountabora (Mood Conditions Community)

Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience.  Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization.   Here’s what she had to say: (Maureen) You note in your member profile that you have been hospitalized a few times. What were those experiences like? (Mountabora) Being in a psychiatric hospital is kind of like being at summer camp. You’re away from home, living in close quarters with strange people, and participating in structured group activities which may or may not have a purpose. There are a lot of rules, and you lose privileges if you don’t follow them. You have to get up way too early in the morning and eat three meals a day at the cafeteria. There’s a lot of emphasis on learning coping skills, typically through classes and worksheets. There’s also a lot of emphasis on medication; most patients are on at least two or three psychoactive drugs. You go to therapy and you see a psychiatrist, but much more often than you …

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