2 posts tagged “personal stories”

Finding answers from the community: Members helping members

Posted 9 months ago 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.

Share this post on Twitter and help spread the word.


Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary

Posted April 7th, 2009 by

Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community?  We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!

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The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 – topping more than 3,400 patient members in just 24 months.  Our community members share so much about themselves on a daily basis – from details about how they manage their condition to their personal experiences and stories.  Why share?  Simply stated, to learn more about themselves while helping others better understand this condition.   In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.

Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.”  The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park.  PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team.  (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out  for 2009 highlights).

Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!

PatientsLikeMe member moakes