94 posts tagged “community”

Finding answers from the community: Members helping members

Posted December 12th, 2017 by

Offering words of encouragement. Sharing advice. Just being there to listen. Over the years, we’ve seen countless examples of members supporting each other (did you know there’s more than a 100K posts that mention the word “thank you”?). Check out some of the ways members are stepping up and lending a hand.

Life-changing advice: Get a second opinion

PatientsLikeMe member Theresa (Pipersun) was diagnosed with idiopathic pulmonary fibrosis (IPF) in June 2017. While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected. After sharing her concerns in the forum, fellow IPF members stepped in and recommended getting a second opinion. Here’s what happened:

“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”

When her doctor denied an oxygen prescription, Theresa’s fellow members with IPF urged her to seek another opinion. This turned out to be a life-changing, and life-saving decision.

“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant.

Making hard decisions

Member Jandaily, who was diagnosed with ALS in 2015, was struggling with her decision about whether or not to get a feeding tube. Worried about being a burden to her husband, she reached out to the ALS community for advice. Her fellow members helped her look at the decision in a new way by sharing their support, advice and personal experience.

Easing fears and finding hope

When member velcro47, was diagnosed with Parkinson’s disease 8 years ago, his doctor told him he would die of old age before dying from his condition. But he started hearing on the news about people dying from Parkinson’s. Confused and worried about what his future could look like, he headed to the forum for answers.

Within hours, a fellow member who’s been living with Parkinson’s for more than 40 years replied with some comforting words from her own experience.

Sharing a helpful guide to coping

Member shumburd, who is living with bipolar, recently shared 5 strategies that help her cope with her symptoms in the mental health forum. One way she “fakes it ’til she makes it” is writing it down:

She hopes that by sharing her 5 tips, she can help others navigate the debilitating mental chaos that can come with an episode. Check out the other strategies here.

Who’s helped you during a tough time? Are you a PatientsLikeMe member? Share about it and say thank you by tagging them in your newsfeed.

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Creating communities, on and off PatientsLikeMe

Posted November 28th, 2017 by

More than half a million members, connecting 365 days a year, sharing countless health insights and words of support. Communities like this one are built on communication. And every day, patients like you are finding new ways to connect and enrich your community.

From in-person meet-ups to live-streaming support groups and off topic threads, patients like you are finding creative ways to build communities. Check out some of the ways connections are growing in and out of the forum.

Taking it offline

What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together.

In Marcia’s words: “It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!” Check out the full story.

 

Connecting to transform lives

When Nola, living with progressive MS, was having trouble making her bathroom handicap accessible, Gary decided to jump in and help. He used his connections at Home Depot (where he worked) to help Nola regain her independence, her ability to clean herself, and most importantly, her dignity. Check out photos of her remodeled, handicap accessible bathroom and rest of their story on the blog.

 

Meeting members where they are

Earlier this year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. His hope is that the group “can help with the feelings of isolation and loneliness, plus provide valuable information and hope for the future.”

Unwinding in off-topic threads

Members use off-topic threads to play games, celebrate life and each other, and to take a break from the stress of living with a chronic illness. Here’s a few popular threads:

  • A thread to celebrate us! Going strong since 2010, this thread was created as a “happy place” for MS members looking for positivity and support.
  • In the Parkinson’s disease forum, members have swapped lots of jokes and pics of their artwork for almost a decade.
  • 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 reading recommendation threads in the ALS forum have been go-to places to share about non-ALS stuff.

Are you part of the PatientsLikeMe community? Join to add your voice and create your own community.

 

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