870 posts in the category “Conditions”

Getting back in the groove — 5 hacks + hints for routines that work

Posted 2 weeks ago by

Even if you haven’t been a student for several years, back-to-school season feels like the time to get back into a routine. What’s involved in a good routine? And what are the potential health perks of a basic regimen? See what the research shows, and join PatientsLikeMe to swap ideas with other members in this forum chat.

How can routines help?

In the business world, countless books and blog posts have touted the importance of routines when you want to succeed.

Many PatientsLikeMe members have talked about the value of routines in coping with a health condition (log in and check out thousands of mentions of “routines” in the forums).

“For me, having a routine with a chronic condition is a must,” says one member with fibromyalgia. “I don’t have to think what I have to do, it is already in my routine.”

Health-wise, having a regimen can help people of all ages. Studies of preschoolers have shown that family routines (with regulated meals, bedtime and screen time) may improve kids’ emotional health and reduce the risk of obesity.

Johns Hopkins Medicine reports that healthy habits and routines help older people, as well. See their seven-year study of people ages 44 to 84 who significantly reduced their heart-health risks by adopting and sticking with certain healthy behaviors (like being physically active for 30+ minutes most days of the week).

What’s involved in a good routine?

Humans are creatures of habit, so routines offer the structure we crave and can help relieve stress. So what goes into a (generally) healthy routine? And what can you get out of it in return?

  • A solid sleep schedule — with the same bedtime and wake-up time, even on weekends — helps regulate your body’s internal clock and sleep more soundly at night, according to the National Sleep Foundation (learn more in our recent write-ups on circadian rhythm and bedtime routines).
  • Healthy, regular meals (home-cooked, if at all possible) mean you’ll have the energy you need and won’t reach for fast food or junky snacks too often. Some people swear by a weekly meal prep day. Research also shows that when we eat (not just what we eat) can impact our circadian rhythm and longterm health. For example, eating over the course of a 15-hour window each day (rather than an 8- to 10-hour span) may throw off your metabolism.
  • Building in time for physical activity and self-care can help boost both mental and physical health. Studies have found that even light exercise is beneficial. Calming activities, like guided meditation and affirmations, or writing or sketching in a journal, are a nice way to start or end the day.
  • Embedding your medication regimen into your daily routine may also help you stick with your treatment plan. One study found that an activity- or cue-based system, such as taking medications while your coffee is brewing or during the weather report on the morning news, works well for some people, rather than just relying on the clock.

Check with your health care providers for personalized advice, of course.

5 hacks and hints for routines that stick

Have you struggled to stick with routines in the past? Consider these fresh ideas and approaches:

  • Stock up on supplies to help keep you on track (just like students do!), such as a daily planner, or colorful sticky notes and pens to jot down reminders and keep tabs on taking medications. You can find lots of nifty gear these days to help you store medshit your hydration goals and more.
  • Turn to technology, such as smartphone alarms and smart home devices to give you a nudge. From wearable activity trackers to apps that remind you it’s bedtime and alarm clocks that mimic the sunrise, there are more and more products geared toward healthy habits.
  • Try weekly routines with catchy names, like “Meatless Mondays,” if you’re trying to cut back on meat, “Takeout Tuesdays,” if you want to limit restaurant meals to just one day a week; “Long Walk Wednesdays,” and so on. Having an achievable motto for each day can keep things fun.
  • Set up cues and mini-rewards for yourself when you’re trying to weave a healthy habit into your routine. For example, if you’re forgetful about taking your meds but you love wearing jewelry every day, put a note in your jewelry box that says, “meds before bling.”
  • Tap into the PatientsLikeMe community! Join the site or sign in to access the following links. In the Mental Health forum, members have been tracking their daily goals together as a community for years. Consider adding to that thread, starting a similar one in your own condition forum or simply posting daily updates on the site to spell out what you’re hoping to accomplish today.

The “best” routine varies from person to person, but ultimately it involves a series of actions that have the potential to become automatic and (ideally) help you live better today. Think: autopilot.

What’s in your daily routine? Have you had success or trouble with getting into good routines? In this forum discussion (psst — join us or log in!), members are swapping ideas and offering support.

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

Posted 3 weeks 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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