15 posts from May, 2017

“Our countries have come together, but our people have not”: PatientsLikeMe’s Margot shares her story

Posted May 26th, 2017 by
The 2 Sides Project

Margot visiting the location where her father’s plane may have crashed in 1966. Photo courtesy Istrico Productions.

Margot Carlson Delogne is the Vice President of Communications at PatientsLikeMe. She is also the child of an American soldier lost at war.

This Memorial Day we wanted to show how she’s working on her own healing process, but also repairing some of the divide left in the aftermath of the Vietnam War. In December 2015, Margot, along with five other grown sons and daughters of American fathers who were lost in the war, travelled to Vietnam to confront the painful history of the parents they’d lost and to meet face-to-face with grown Vietnamese children who had also lost parents in the same war, but on the opposite side. The journey, named The 2 Sides Project, also allowed the group to visit the locations where each their fathers had fought and died, an experience that left Margot “changed forever.”

“My father’s plane went down 200-300 meters from a bunker that had been his target,” Margot says of her father, Air Force Captain John W. Carlson, who was shot down in December 1966. “We looked at online maps before we went and they showed an odd line of trees along the edge of a road, and exactly 200 meters from that, another set of trees that looked different from the rest…So we went to that area and got permission to walk toward the spot. One of the other American sons on the trip, Ron, watched his GPS and reported how close we were every few steps. He stopped me when his map said 200 meters and pointed in front of me. I looked and saw a crater. I asked Ron if its shape and size were natural and he said no, he didn’t think so. So, I walked into it and sat in the center. That’s where I held my father’s service. I read messages from my sister and my mother and played a favorite song of my father’s, Greensleeves. Margaret, a fellow airman’s daughter on the trip, helped me read the poem High Flight, by John Gillespie Magee, Jr. I climbed out of the crater and left, a little lighter than before.”

The 2 Sides Project

Margot sitting in the crater where she held her father’s service. Photo courtesy Istrico Productions.

In the same trip, Margot and the group also met with twenty Vietnamese sons and daughters who were children of parents lost fought in the war on the opposite side. Their meeting, according to Vietnamese officials, was the first formal one between children whose fathers died fighting on both sides of the war.

Mr. Xiem, 66, took part in one of the historic meetings, sharing with the group that his father had been killed by American bombs in 1965, and two years later his school was bombed by an American aircraft killing 33 students at 1 teacher. “When I was informed that I would meet with The 2 Sides Project and interact with children of U.S. soldiers killed in the Vietnam War, I began to think a lot,” Mr. Xiem said. “My feelings gradually changed from hatred and resentment to empathy and pity for the children of American soldiers killed in the Vietnam War. When I came to the meeting, I saw the lack of confidence, the anxiety on their faces…I witnessed their tears. And at that moment my hatred seemed to melt away, leaving only sympathy.”

The 2 Sides Project

Mr. Xiam wearing The 2 Sides Project pin, standing with Ron Reyes, an American son. Photo courtesy Istrico Productions.

The entire journey, which has been covered by the New York Times and the Washington Post, was documented in film by Anthony Istrico, Director and Founder of Istrico Productions, and premiered at the GI Film Festival last night. Three members of the Vietnamese group joined Margot and the five other American sons and daughters for the premiere – watch the trailer here. They also visited the Vietnamese Embassy and the Vietnam Veterans Memorial, along with a number of other cultural activities, and ABC News was there to cover their journey.

The 2 Sides Project

The American sons and daughters, from left to right: Margaret Von Lienen, Ron Reyes, Margot Carlson Delogne, Mike Burkett, Susan Mitchell-Mattera, Patty Loew.

When she presented the idea of the 2 Sides Project to the Vietnamese government, the official’s reaction amazed her. “He looked me in the eye and said ‘our countries have come together but our people have not, and I think your project will help. We will support you however we can.’ That’s when I knew this was going to become a reality.”

In her own way, Margot is working to mend the rift between the two countries the best way she knows how, communication. To read updates and stories about their journey, visit the 2 Sides Project website .

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“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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