12 posts tagged “support”

75k [virtual] hugs on PatientsLikeMe – and how social connections are good for your health

Posted August 22nd, 2017 by

Newsflash: “Social Interaction Is Critical for Mental and Physical Health,” as The New York Times recently reported. Decades of research support the theory that social connections can have a positive effect on your health. Having social ties may help prevent illness and is still a boon to your health when you’re sick or living with a health condition. Check out some of the research and see how members are supporting each other socially on PatientsLikeMe.

What’s the science behind social connections?

As the Times reports, a 2001 study found that people with coronary artery disease who’ve had a heart attack have a lower risk of another cardiac arrest if they’re more socially connected. Other studies have shown that social interactions and support may help with everything from wound healing and physical pain to mood and psychological symptoms.

Researchers who’ve studied the benefits of social interactions for women with breast cancer have found that receiving social-emotional support may reduce stress and affect the body’s “HPA” axis (or hypothalamic-pituitary-adrenal axis – that’s a mouthful). Basically, the HPA axis uses glands, hormones and nerves to help regulate several processes in the body: stress response, immune and digestive systems, mood and emotions, sexuality and energy storage.

Studies show that “instrumental support” (like in-person assistance with getting to appointments and taking medications) is helpful to people with health conditions, but some researchers say that “social-emotional support” (connecting face-to-face or online) is critical in disease management. Another New York Times article notes that long-distance friendships are beneficial, and “in many studies, friendship has an even greater effect on health than a spouse or family member.”

Here for each other – on PatientsLikeMe

Many PatientsLikeMe members arrived here because of their diagnosis – but they’re discussing more than their health on the site. Many build a virtual network of comrades with whom they chat or check in about their weekends, birthdays, holidays, hobbies and more. For some people, having a health condition may make it harder to get out and socialize face-to-face, and for others, an in-person network of “normals” (people without health issues) doesn’t always get it.

Here are some stats about non–health-related exchanges on PatientsLikeMe:

  • 8,372 “happy birthday” posts
  • 8,209 “here for you” posts
  • 4,921 “happy for you” posts
  • 3,144 “Merry Christmas” + 950 “Happy Holidays” posts
  • 6,126 “this weekend” + 570 “your weekend” posts
  • 2,254 “how are you doing?” + 1,256 “how are you feeling?” posts
  • 2,229 “I hear you” posts
  • 866 “made my day” posts
  • And, finally… 75,553 “hugs”

Let’s talk (OT)!  

Just to name a few “off topic” (“OT”) discussions on PatientsLikeMe…

  • In the Parkinson’s disease forum, members have swapped lots of jokes and pics of their artwork for almost a decade.
  • In the MS forum, members play “Ask the next person a question” and all sorts of word games.
  • Members of the mental health community have kept their “Three word story” thread going strong for seven years, and shared their “Goals for today” with each other for even longer.
  • “Potpourri” and family photos threads in the ALS forum have been go-to places to share about non-ALS stuff.

What would you like to chat about? Join the community today and click the green button to “Start a new topic” like the ones above (or whatever you can think of!).

Share this post on Twitter and help spread the word.


“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.”

Share this post on Twitter and help spread the word.