3 posts tagged “forums”

“It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe

Posted May 24th, 2017 by

Member Gloria (sunshine221) has been here almost since the start. The Parkinson’s Disease (PD) community on PatientsLikeMe launched in 2007, and Gloria joined in 2008. We recently caught up with her about her early days with PD, how she has used PatientsLikeMe through the years and what she’s up to now.

Early days with PD and finding PatientsLikeMe

Gloria had been dealing with walking problems for four years, and was initially diagnosed with spinal stenosis. After having surgery for that, she was diagnosed with PD. She had to shift gears, in terms of finding support online.

“Another web board that I was using was great for the spinal stenosis but their Parkinson’s section was inactive,” she says.

 

“I liked PatientsLikeMe’s tracking sections and how it matched with what the doctors were asking.”

 

Gloria notes that HIPAA laws made it harder for doctors to connect patients with each other, so meeting people with PD online (and in in-person support groups) was key.

“PatientsLikeMe lets me share with people of similar age and illness progression, and when I might be feeling discouraged it gives me a source of hope,” she says.

Using PatientsLikeMe through the years

Early on, Gloria turned to the website for members’ drug evaluations (noting some frustration over the delay in being able to track Rytary XR – but that is possible now). Over time, she has used the site for tracking her own condition and helping others who’ve joined the community.

“I often look back at the historical data – sometimes it’s frustrating, other times encouraging,” she says. “I mostly look at my own data but if I’m trying to answer another poster’s question, I might look at their data to see what else might be happening with them.”

She has used her data to help people offline, too, including at her support groups. The wife of a local retired dentist with PD needed more information about the condition.

“So I gathered literature from my file and brought it up to her yesterday,” Gloria says. “This just shows that people from all backgrounds need education and support.”

Meanwhile, Gloria has continued to make strong friendships through the forums.

 

“The regular posters come to feel like family.”

 

Gloria says she has met up with fellow PatientsLikeMe members at the World Parkinson Congress in Montreal (2013) and Portland, Oregon (2016).

What’s she up to these days?

“It’s been over 10 years that I’ve had Parkinson’s,” Gloria says. “Looking back, I’ve been lucky that the progression has been slow.”

Gloria and her husband recently retired but continue to do some consulting work. They divide their time between their home in upstate New York, a winter home in Florida and a family retreat in the Catskill Mountains. She travels, exercises, maintains a personal blog, and even exhibits her work in art shows (top photo).

“My mantra is ‘use it or lose it,’” she says. In addition to encouraging others with PD to exercise and stay active, she also recommends: using a movement specialist, keeping legal documents (will, power of attorney, and healthcare proxy) in order, and educating adult children about the condition and its possible long-term progression.

Gloria fears her condition will get worse and her grandkids could be afraid of her PD (because she witnessed this with an aunt who had ALS), but she remains hopeful.

What brings her the most joy? “Spending time with friends and family, and watching my 2-year-old granddaughter learn – and hoping that there will be more grandchildren to come in the next few years.”

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More than a pretty face

Posted October 7th, 2013 by

You’ll soon see some changes to the way PatientsLikeMe looks, including new icons, colors and fonts. This might look like we’re just redecorating, but these changes are fundamental to helping us make the bigger improvements you’ve been asking for. We’re still putting a bit of polish on it, but here’s an overview of what’s changing, and why.

What you’ve told us

To improve your experience on the site, our design team started by interviewing members from many of our communities. We asked about their health experiences in general, then we watched people use PatientsLikeMe. We saw where they got stuck or frustrated and listened closely to what they value most. There were a handful of things we heard repeatedly:

  • There’s a lot of great information, but it could be less cluttered and easier to navigate. Dealing with your health is overwhelming enough as it is.
  • The experience on tablets and phones could be better.
  • Most people are happy to share health data to support research, but it’s not always clear what’s most important to share and why. Entering some kinds of data can also be challenging.
  • Sharing experiences with other members is the best part of the site, so it should be even easier to find and connect with other people who have similar experiences and interests.

What’s changing

Nearly all of the changes you’ll see in the next month are cosmetic, but there are a few places where we’ve changed minor things to be more consistent across the site. The only navigation change you’ll see is in the forums. Because many of you use only one forum, we’ve condensed the left navigation menu into a single list at the top of the page. This leaves more room to read posts, especially for people who need to use larger fonts.

Site style

As for the visual changes, you’ll see that we’ve introduced a white header and a soft blue background texture. This mirrors the shift you may have noticed in our emails and our homepage, making the site more bright and airy.

We’ll now be using fewer colors and icons, so there’s less competing for your attention. The remaining icons are toned down. Soon, the less important links on each page will be getting a more subtle treatment, too. Later this year and early next year, we’ll be simplifying the bright, busy badges and using more consistent colors in the charts to draw your attention or communicate whether something is positive, negative, or neutral.

 

Site style 2

The page headers, buttons, and fonts are getting an upgrade, too. We’re slowly working through each page to make layouts as consistent as possible, so you’ll always know where to look when you want to take an action or see the next page of results.  We’ve also chosen a beautiful new typeface called Avenir Next, which has wide, simple letters that make it a pleasure to read on the screen.

What’s coming later this year and next year

We started with visual design because it will make many of the other upgrades easier. The updated controls are built to be touchscreen-friendly for mobile phones and tablets. Some of the rebuilt pages already resize themselves for smaller screens, and we’ll be upgrading the rest a page at a time. We also have an engineer focused on making our charts work on Apple iOS devices.

You might notice a few odds and ends that feel unfinished, like the badges and charts that clearly don’t match the new look. Unfortunately, trying to upgrade too many things at once tends to cause bugs. Updating a big site is like rewiring an airplane while it’s flying. We hope you can bear with us while we clean up the rough edges as quickly as possible.

Over the next few months, you’ll start seeing big enhancements to our news feeds and journals. First, we’ll make them easier to read and more relevant. After that, we’ll start adding richer content. We’ve noticed our members are making more and more use of these pages, so we think they’ll eventually become the place most people check out first.

We’ll also be making it much easier to share the data that’s most valuable for research (and explaining why it’s important). The three stars page will allow direct data entry and will stop asking for old data. Updating your treatments will get easier, too.

This is just a preview of what’s coming in the near future. We’ve heard all the feedback you’ve been sharing in the forums and in conversations with us, and we have more upgrades planned for next year.

Our members do amazing things together: raising awareness, sharing your experiences to support medical research, and helping each other live better every day. I think our planned improvements will make all of that easier over the next year or so. In the meantime, I hope these first steps will at least make it a little more beautiful.

PatientsLikeMe member KimGoodwin