10 posts from June, 2014

“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2

Posted June 14th, 2014 by

Back in May, Eleanor (redblack) wrote about her some of her experiences with bipolar II to help spread the word for Mental Health Awareness Month. She’s continuing this month by sharing about the personal support system she’s developed through a wonderful relationship with her husband Jim, her special bond with a particular mood community member and how she’s learned about the value of sharing the “whys” of her bipolar II.

If you’ve been following along, keep an eye out! We’re going to post the third and final part of her interview in July. Miss the first part? Read that here.

The benefits of spousal support

My husband of thirty-seven years, Jim, is my strongest and most dependable support. We met forty-two years ago teaching high school in New York State. I was the single mother of two boys, four and five, who are Native American and Black on their biological father’s side. Jim was a Catholic priest. The boys soon adopted him as a father figure. We married five years later and moved to Maui. Jim adopted Mike and Mark, and later, we had James and Kalea. Before our marriage, he had already helped me through one suicide attempt.

Over the years, we have always felt we were destined to be together. I can honestly say that in forty-two years, he has never even raised his voice to me. Because of abuse in childhood and my first, brief marriage, I could not have borne it. During our marriage, he has seen me through three other suicide attempts and multiple ECT treatments.

He knows my moods and when they change. During depression, he is my cheerleader, safe harbor and my memory, celebrating the loving, talented person he believes me to be, and reminding me of all my accomplishments. When I am in the pit, he makes certain I know he is with me, but never tries to force an affection frozen within me.

As I worked the last six months to survive without my retiring psychiatrist of thirty-seven years, I have become more aware that Jim is the center of my support and always has been – not my doctor. As this realization grew, our relationship deepened. I thought I knew what a loving marriage was. However, our current relationship is stronger and more beautiful than ever. He is the one person I know who, while having no real experience of being bipolar, knows what to say, how to provide safety and strength, and how to let go when I am able to enter life again.

Support from the members of PatientsLikeMe

After ignoring the other members of PatientsLikeMe for the first few years of membership, I felt compelled to respond when several people commented on my InstantMe daily entries. I had mentioned the difficulty of finding a therapist to replace my retiring psychiatrist, and one member in particular wanted to help me. She lives in a major city and suggested I go to the nearest hospital associated with a medical school where there would be residents available for counseling. I explained here on Maui, we raise pineapples and sugar cane, and most jobs are related to the tourist industry. Hawaii is expensive and lacks mainland amenities such as many doctors from which to choose, support groups for mental health, and large shopping malls (which seem to be a priority for would-be residents).

So Kitty became my sounding board, my comrade-in-arms in the challenging world of bipolar II, and most of all, my friend! I discovered I was often more open to what she had to say than when my doctor said the same thing. Being put together very much like me, she had a perception of a situation I might find perplexing. She cut to the heart of the matter. Once, she suggested a different take on the puzzling behavior of a family member, and after following her advice, the relationship was mended.

She is funny and optimistic despite many problems, and with pretty much daily communication, we manage to keep track of each other’s ups and downs. It raises my damaged self-esteem to be able to encourage Kitty and others. I have learned that friends and family, although well-meaning, are often clueless as to the nature and future of being bipolar. Seeing from PatientsLikeMe members that this is pretty much a constant, I’ve been more at peace and even forgiving toward comments such as, “I’ve tried to help you, but you don’t make any effort,” or “Hasn’t that doctor found the right pill yet?”

Members of PatientsLikeMe also assured me by the tone of some of their entries that I am entitled to lose hope and to want to – and actually do – give up occasionally, and even be quite irritable! None of us are saints. We often feel like the last soldier standing in a curious and never-ending war – and that’s OK!

I could have used their wisdom and comfort years ago, but I’m so grateful I have access to them now. Thank you, staff of PatientsLikeMe, for making that possible.

Using patient charts and InstantMe tools

As for the charts and InstantMe tools, I am making more use of them as time passes. The charts are very helpful – and surprising – since my memory has been seriously impaired by depression. I find myself wondering, “How was it last summer?” and then can go to the charts and see immediately how I felt. Remembering the events of those months, I am often glad to see I handled things well, or sometimes, that I struggled terribly and this struggle accounted for the relationship that fell apart at that time. Seeing and using the daily InstantMe e-mail is a reminder and little push to work again.

Now that I have connections with other people on PatientsLikeMe, I find myself always filling in the comment section on InstantMe, something I originally never did. This is because I now realize the value in sharing the “whys” of my InstantMe selection. I get feedback from others and formulating a reason for my choice helps clarify it in my mind.

Reading past comments of my InstantMe, I’ve been able to spot triggers that appear again and again. I learn what feeling and experiences should be red flags for me. Often having questions or doubts about a medication, it’s so helpful to be able to find out what others have experienced with it. After all, my doctor isn’t taking it. Other members of PatientsLikeMe are!

Share this post on twitter and help spread the word for mental health.


One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury

Posted June 12th, 2014 by

Collaboration Will Uncover Real-World Experiences, Generate Patient Data That Improves Daily Living and Overall Understanding of Conditions

SEATTLE, WA—June 12, 2014—One Mind and PatientsLikeMe announced a new multi-year collaboration to help the millions of people worldwide who are experiencing post-traumatic stress (PTS), traumatic brain injury (TBI), or both. The two organizations will work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

Building on the headway One Mind has made in seeking out real solutions for patients, One Mind CEO, General Pete Chiarelli, U.S. Army (Retired), said the collaboration will address longstanding issues for people with all forms of PTS and TBI. “You only have to look at the way we diagnose and treat people to know that we’re decades behind in our understanding of these conditions. We have an amazing ability to save soldiers on the battlefield, but we don’t do a good job addressing their invisible wounds. And we prescribe a mix of off-label drugs because nothing has been developed specifically for their condition. We need to look to the future to improve outcomes and lives, and this innovative partnership will do just that.”

Almost 8 percent of adult Americans will experience PTS (including the disorder known as PTSD) at some point in their lives, according to R.C. Kessler’s findings from The National Comorbidity Survey (NCS) Report. In addition to veterans, victims of sexual assault and others who have experienced a traumatic event may develop PTS. TBI is broadly defined as an alteration in brain function or pathology caused by an external force that can occur at home, at work, during sports activities, or on the battlefield. In 2009, the Center for Disease Control and Prevention reported that there were at least 2.4 million emergency department visits, hospitalizations, or deaths related to TBI across the country, and that the leading causes of TBI are accidents, sport-related injuries or other incidents.

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

One Mind is also supporting multi-center clinical studies called TRACK-TBI and CENTER-TBI, which will follow thousands of TBI patients over three years. Both studies enroll patients within 24 hours of their injury and are focused on improving treatments through developing new diagnostics tools such as imaging protocols and biomarkers. Heywood added that in the future, the patient-reported data from the TBI community on PatientsLikeMe may be combined with the TRACK-TBI and Center-TBI data, as well as other studies, to create a rich and unprecedented set of information about people’s real-world experiences.

One Mind and PatientsLikeMe are actively seeking nonprofit and other partners to grow the online community and learn together about people’s real-world experiences. People living with any form of PTS or TBI can join fellow members of the PatientsLikeMe community today to become early users of the site and provide feedback on future customizations for the community. Go to www.patientslikeme.com for further information.

About One Mind
One Mind is an independent, 501(c)(3) non-profit organization dedicated to benefiting all affected by brain illness and injury through fostering fundamental changes that will radically accelerate the development and implementation of improved diagnostics, treatments, and cures; while eliminating the stigma. One Mind believes in open science principles and creates global public-private partnerships between governmental, corporate, scientific, and philanthropic communities. Visit us at www.1mind4research.org or follow us via Twitter or Facebook.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

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CONTACTS

ONE MIND                                                              
Brooke Whitney
Office: +1 206.946.1768
brooke.whitney@1mind4research.org           

PatientsLikeMe
Margot Carlson Delogne
Mobile: +1 781.492.1039
mcdelogne@patientslikeme.com