31 posts tagged “bipolar”

“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3

Posted July 7th, 2014 by

Eleanor (right), her daughter Kalea (left) and granddaughter Malia.

Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)!

Eleanor talks about her relationship with her psychiatrist Jon and how they recently sealed “nearly four decades of struggle, pain and healing.” Read on for the final chapter, and if you missed Eleanor’s two previous entries, check them out here.

 

 

 

My Psychiatrist of Thirty-Seven Years: Jon Betwee

What can I possibly say? Jon Betwee became my psychiatrist thirty-seven years ago, a month after we moved to Maui from western New York. He retired February 1st, but not before personally placing a few of his patients with one of the very limited number of therapists here. I was fortunate to be in that group. I am seeing a female nurse practitioner, licensed to write prescriptions and well-versed in bipolar disorder. As my PatientsLikeMe friend, Kitty, said to me last week, “She’s no Jon, but she just might turn out OK yet.”

Jon is very reserved outwardly, but extremely discerning and compassionate inside. He became the best friend I’ve ever had and the rock to which I clung whenever I was drowning. Jon was available 24/7, at home as well as the office. He treated me for years for severe clinical depression. Twice during the thirty-seven years I was bedridden because of severe weight loss and inability to eat in the depths of my despair. Both times, Jon came to our home for sessions until I was strong enough to go back to his office.

I was hospitalized once in Honolulu and given – it was discovered later – a series of medically incorrect electroconvulsive therapy (ECT) treatments. Jon later sent me to Western Psychiatric Institute and Clinic in Pittsburgh, where I received excellent therapy with my individual doctor, attended classes in Cognitive Behavioral Therapy, Art Therapy, and received a thorough examination of my diagnosis, etc. I was also given ECT treatments, which I stopped. I consider ECT to be extremely inhumane.

About ten years ago Jon changed my diagnosis to bipolar II. He saw me through two suicide attempts. Frequently he communicated with experts on the mainland concerning my symptoms and medication. I was welcome to call him during the night when violent nightmares drove me to sit in the living room and ponder the value of ever leaving again, a darkness which had become my home. I seldom actually called. I would say to myself, “If it gets worse, I’ll call.” Then it would get worse and I’d say, “Well, if it gets worse than this, I’ll call.” Eventually the sun would begin to rise, and I’d breathe a sigh of relief. I had made it through another night. The important thing was not that I called, but that I knew I could call.

In my frequent cycling, it has taken years to accept his constant observations that when I am hypomanic, I think I am “cured” and ignore any and all red flags. When I am depressed, I cannot remember the healthy periods and feel it would be better for myself and my family to die. Having worked in a settlement house and been active in the Civil Rights Movement, I found a strong, liberal ally in Jon. Over the years we exchanged many books. He introduced me to Kay Redfield Jamison whose bipolar caused her to frequently change her hair color, re-arrange furniture and spend money she didn’t have on things, often for others, which seemed unbelievably desirable, rivaling “the rings of Saturn” in their beauty. Just – like – me. He gave me “Darkness Visible” by William Styron. It was like looking in a mirror. Jon studied my extended family and explained that I had come by bipolar disorder honestly through genetics. This relieved much of my guilt over an illness that frightened my children and challenged my husband.

Over the years, I have been on just about every medication that applies to depression and bipolar II. Some were ineffective; some had side effects severe enough to make me stop them. For two years my main medication has been Selegiline. Jon expressed caution about continuing it just before my therapy ended. Since then I have discontinued it with my therapist’s approval because of nightmares, weight gain and possibility of liver damage.

Two years ago, Jon gave me a detailed printed sheet for recording daily my mood levels, hours slept, and my place on a scale that went from deep depression to extreme mania. I also would write in any event that caused cycling. At each session he checked it, asking questions and pointing out how items I recorded affected my bipolar.

When he changed offices a few years ago, he gave me a painting of a depressed woman which had hung in his former office that I’d admired for years. It dominates my living room. I mention this to show how tuned in Jon was to his patients and how he looked for ways to be kind. There was a time when I couldn’t pay, but he assured me it could be made up whenever we could afford it. All this is vital to treating bipolar. Our lives are spent on a rollercoaster. Our loved ones are pained and don’t understand. A therapist who respects you, isn’t puzzled by your rapidly changing behavior, is never judgemental or impatient makes us feel we do have value and maybe continuing the struggle to live with bipolar is worthwhile. That’s why I am here, able to answer this survey.

Last August Jon told me he was retiring. I cried. For forty-five minutes. He said it would take some time, but he would help me make the transition. During the ensuing months we decided to meet twice a week, sifted through possible therapists until zeroing in on one, and tidied up a major issue that had plagued me on and off for years. I wished my last visit would be cheerful, showing my gratitude for all he had done, but that seemed impossible since every session now ended in tears. Before the last session I spent time preparing for it. I gained the realization that 1) my husband had become my main support 2) my friend, Kitty, on PatientsLikeMe – and other members – would continue to give me help and strength and 3) I reviewed what I’d learned from Jon over the years.

I was able to come to the last session in peace with a smile. We laughed about things that happened over the years. He said he would always be available by phone and we parted with a warm hug, sealing nearly four decades of struggle, pain and healing. I will always have what he’s given me. It is enough.

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“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!

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

Posted May 9th, 2014 by

Eleanor and her husband, Jim

 

We just posted that May is Mental Health Month, and so we wanted to help raise awareness by getting the patient perspective out there. PatientsLikeMe member Eleanor (redblack) first experienced bipolar II as a young woman, and she’s been managing her mental health with the help of her family and psychiatrist ever since.

She shared about her journey in a three-part interview series, and we’ll be posting one part each month. In this first edition, Steubenville talked about how twinkling Christmas tree lights gave way to thoughts of loneliness, how life in a convent seemed like the right plan, and how she learned to recognize oncoming depression and mania. Read on for her full interview and keep an eye out for part two in June!


Navigating the ups and downs of a diagnosis

Although I was diagnosed with bipolar II well into adulthood, I feel I experienced it very early in life. On a particularly joyous Christmas Day when I was about twelve, as the dusk fell early on a typical western New York winter afternoon, I stood alone, gazing at the twinkling Christmas tree, and suddenly thought, “This is how it will always be: cold, and dark, and lonely.” This is symbolic of the way I may still cycle during a single day, many times for no apparent reason. At that time, even on happy, fun-filled days, something I may have heard or seen might plunge me into a very dark place and hurl me into a struggle to hold back the tears.

Spiritual highs, melancholic music, lyrics of hymns and the all-encompassing silence of five years in the convent seemed to fit me like a glove. Bouncing from the precious fellowship of the sisters to sad reflection on the passion of Christ seemed normal to me, and I felt I had found the life I’d always craved. Later, when one of my four children whined, I’d reply, “Remember, the world is cold and life is sad,” words I’d often sung as a nun and always felt were such an apt description of life.

Besides the frequent cycling, I’ve experienced other unwelcome features of bipolar such as periods of irresponsible spending and lack of judgment in relationships. So often I found myself standing aside and observing a self who repeatedly cast aside her values and self-pride to pursue an elusive and imaginary gratification.

It took years of therapy and the patience of a saintly psychiatrist for me to begin to understand I had frequent mood shifts caused by mixed up brain circuits – and not existential, undisputable thoughts. First, the universe was amazing, full of possibilities, and anyone who disagreed was to be pitied. Then, suddenly, all roads led to hell. I was totally worthless and no one valued me. I could prove it!

My psychiatrist of thirty-seven years, Jon Betwee, helped me understand that when I was hypomanic, I could not remember depression. When deep depression took over, I was convinced all was lost forever, and the best way to spare others and myself further pain was to die. I tried – four times.

Now, when I see myself feeling a little too “high,” and I think I am funny, have brilliant ideas to share, and life cannot move fast enough, I tally these signs as being hypomanic and put the brakes on. No, I am not happiness and wisdom personified. I put in place some deep breathing, a quiet time of reading, or long conversations with my supportive, knowledgeable husband. Triggers can be too hectic or too frequent and demanding. Eliminating some social gatherings and frenetic activity helps.

I now recognize the approach of depression when I re-play sad and tragic DVDs, cry over everything or imagine hidden and antagonistic messages beneath the conversation of family and friends. Triggers may be letting myself get very fatigued, ruminating about past hurts, making mental lists of all my mistakes and weaknesses. Now I make myself get up, start a task that will absorb and re-direct my attention, and review “What would Jon suggest I do?”

 Share this post on twitter and help spread the word for Mental Health Month.


“Mind your health” – Recognizing mental health in May

Posted May 2nd, 2014 by

This May marks the 65th anniversary of Mental Health Month, which has been observed by Mental Health America (MHA) since 1949. The MHA’s 2014 monthly theme is “Mind your health,” and it’s all about building public awareness for mental health and wellness while learning about the complex connections between the mind and the body.

According to the National Institute of Mental Health (NIMH), 26% of Americans ages 18 and older are currently living with a diagnosable mental health condition.1 That’s about 1 in every 4 adults. In fact, NIMH says that mental health conditions “are the leading cause of disability in the U.S. and Canada.” They can cause mood swings, anxiety, personality changes and more, and many times, the subtler emotional symptoms can be very tough to describe.

The mood community at PatientsLikeMe is more than 33,000 strong, and in addition to tracking symptoms and donating personal data through detailed health profiles, members are sharing their experiences in the PatientsLikeMe forum. People are talking about everything from sleep habits and mood research to favorite emotional movies, and they’re also sharing photos symbolizing how they feel. If you’ve been recently diagnosed, connect with others who are experiencing the same and know what you’re going through.

And if you’re looking for a few ways to raise awareness for mental health this month, check out some of the MHA’s suggestions below.

Don’t forget keep an eye out for a new monthly interview series next week. PatientsLikeMe member Steubenville will be sharing her experience with bipolar II in a three-part series, and part 1 will kick off Mental Health Month. Stay tuned for parts 2 and 3 later on this summer!

 Share this post on twitter and help spread the word for Mental Health Month.


1 http://www.nimh.nih.gov/health/publications/the-numbers-count-mental-disorders-in-america/index.shtml


National Depression Screening Day and National Bipolar Awareness Day

Posted October 10th, 2013 by

Screen Shot 2013-10-08 at 11.46.51 AM

As part of Mental Illness Awareness Week, today is both National Depression Screening Day and National Bipolar Awareness Day. It’s all part of a larger effort to raise awareness about the mental conditions that affect the lives of millions of people around the world.

So what are the stats on depression?[1]

  • Depression affects as many as ten percent of all people in the United States, an incredible 30 million people
  • One out of four young adults will experience a depressive episode by age 24
  • 10% to 15% of all depressions are triggered by other medical conditions (such as thyroid disease, cancer or neurologic problems) or by medications

Here are the facts about bipolar disorder:[2]

  • More than 10 million Americans are living with this condition, which is characterized by extreme mood swings and intense emotional states
  • More than half of patients are diagnosed between the ages of 15 and 25
  • Bipolar disorder affects men and women equally

But at PatientsLikeMe, we know that patients aren’t just a statistic, and that facts don’t tell the whole story. Your journey is unique, and this is why more than 15,000 PatientsLikeMe members with depression and more than 4,000 with bipolar disorder are sharing their stories with the greater mental health community and talking about what it’s actually like to live with these two conditions. In the past, you told us what depression feels like, and today, we are raising awareness for depression and bipolar disorder and learning to live better. Click here to sign in and share your experience today.


[1] http://www.mentalhealthscreening.org/info-and-facts/depression.aspx

[2] http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Bipolar1/Home_-_What_is_Bipolar_Disorder_.htm


Life with Bipolar I Disorder: What We’ve Learned

Posted December 9th, 2011 by

Yesterday, our interview with bipolar blogger Andrea gave you a glimpse into what it’s like to live with bipolar I disorder.  Today we take a deeper look into this mental health condition using the data and experiences shared by our 1,237 bipolar I members.

First off, however, you may have heard of something called bipolar II as well, so let’s talk about how bipolar I and II differ.  Bipolar I is a subdiagnosis of bipolar disorder that conforms to the classic concept of manic-depressive illness.  It is characterized by at least one manic or mixed episode, and there may be episodes of hypomania (marked by elevated mood, hyperactivity and grandiosity) and major depression as well.  In contrast, bipolar II disorder – which is slightly more prevalent at PatientsLikeMe with 1,556 patients reporting it – is marked by depressive episodes that are more frequent and more intense than the manic episodes.

A Snapshot of the Bipolar I Community at PatientsLikeMe

Now, let’s take a look at the wealth of data found at PatientsLikeMe.  To give you a sense of the makeup of our bipolar I patients, 74% are female, more than 78% have an official bipolar I diagnosis, and approximately 40% report experiencing their first symptom prior to the age of 19.  What exactly are the symptoms of this condition?  Some of the most commonly reported include delusions, excitability, flight of ideas, grandiose thinking, hallucinations, irritability and paranoia.  As you can see, most of these speak to the “manic” side of bipolar I disorder, which involves “excitement of psychotic proportions” as well as hyperactive, disorganized behavior.

As Andrea’s interview yesterday revealed, treating bipolar I disorder can mean treating both mania and depression simultaneously.  Further, our patient-reported data shows that the two prescription medications she takes currently – lithium for mania and Lamictal for depression – are among the most commonly prescribed treatments for bipolar I patients, along with individual therapy and Seroquel.  How well do these treatments work?  Click on each treatment name to read our patients’ evaluations of their effectiveness, side effects, cost and more.

Finally, much can also be learned directly from the experiences our patients share on their profiles, treatment evaluations or forum posts.  We leave you with several patient quotes from our Mental Health and Behavior Forum that help to fully illuminate life with bipolar I disorder:

  • “My manias last for about three to four months and are followed by depressions that tend to also last three to four months.  Mine is the classic form of the disease with manias characterized by hallucinations, grandiosity, and impulsivity, and depressions characterized by fatigue, guilt, and somatic concerns.”
  • “The condition is every part of me as anything else. My choice to treat it arises from the consequences of living with bipolar in a non-bipolar world and not because I am broken and in need of repair. Bipolar “disorder”, well, whose order am I in disarray?”
  • “Now I’m a little manic.  I know what you mean about relentless depressions.  I have those too.  At the other end of the spectrum, I become psychotic.  That’s the part that really frightens me and usually lands me in the hospital, or worse.”
  • “A month ago, I truly would have been leveled by all this drama.  I’ve come quite a distance in a short period of time.  You guys give me such strength.  I know that with your help, I can make it through life’s ups and downs while keeping mine under control.”

If you’ve got something to share about bipolar I as well, join the conversation today!


Spotlighted Blogger: Bipolar Patient Andrea of “Lithium and Lamictal”

Posted December 8th, 2011 by

How do we know we’re truly living in a Health 2.0 age?  Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions.  For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our members, Mollee Sullivan, and last month, we spotlighted diabetes patient Michael Burke’s blog “Life on the T List,” which shares his experiences before and after a kidney transplant.

Bipolar Blogger Andrea of "Lithium and Lamictal"

As a result of this growing trend, we’ve decided to begin a blog series featuring some of the other amazing bloggers that are part of the PatientsLikeMe community.  To start things off, we’d like to share our interview with Andrea, a three-star member who started a candid blog about life with bipolar I disorder earlier this year called “Lithium and Lamictal.”  (The title refers to the two treatments she’s found that work best for her.)  Tune in below to find out why she began blogging and what she hopes to achieve.

1.  Why did you decide to start blogging about bipolar disorder?

I decided to start blogging about bipolar disorder after 21 years of living with this health condition. I was diagnosed with manic depression (now referred to as bipolar disorder) in 1989, and the main reason I bought my first computer in 1997 was so that I could try to connect with other patients and research bipolar disorder using the World Wide Web. I just knew there had to be more information out there than what I had gotten from my psychiatrists and the few pamphlets and books I had read before everyday people began using the Internet for research.

I’m still trying to learn as much as I can about bipolar disorder and health and wellness. I have always been interested in finding information about how people are living day-to-day with the condition. When I decided to start my blog, I wanted to give readers a view into my life so that I could provide an example of someone who is trying to do her best to manage the condition. I hope that my blog will inspire others to take charge of their physical and mental health, and also to remain hopeful and positive.

2.  Your blog is called “Lithium and Lamictal.”  How long did it take to find this treatment combination, and what difference did that make in your life?

When I was first diagnosed with manic depression in 1989, I was given lithium as a monotherapy. It prevented mania, but I still got depressed and I just had to deal with it because psychiatrists wouldn’t prescribe antidepressants since I had a history of severe manias and psychotic breaks. I think it was 2001 when my then-psychiatrist recommended that I try Lamictal at a time when I had been stable for a while. I took it and I didn’t get depressed for a few years, but I did have some unpleasant side effects, so I discontinued it and eventually experienced a serious depression.

Last year, when I was going through another serious depression, my new psychiatrist suggested that I try Lamictal again. After several months, my depression lifted, and after reflecting on my experiences with the medication, I realized that while Lamictal wasn’t great at relieving my depression, it definitely seemed to prevent my depression. At this point, I plan to take it indefinitely. I am taking a lower dose than with my old psychiatrist, and I also take medication and supplements to counteract the side effects. So now I take lithium and Lamictal and feel healthier than ever. All things considered, they are the best medications I have tried with the fewest side effects. Together they prevent mania and depression, and I hope I’ve found a combination of medications that will work for me for years to come.

3.  What have you gotten out of being a member of PatientsLikeMe?

I really like tracking all of my health conditions and medications as well as exercise and sleep. It’s a good way of figuring out what is working and what isn’t. It’s also a reminder that I need to continue to take good care of myself, and it lets me know when I am slipping and need to get back on track. My psychiatrist likes it when I bring the charts to my appointments. She has also started asking me to bring my blog posts.  The [PatientLikeMe] forums are a good way to learn from other patients about what is working for them. I post my new blog posts in the forum in the hope that they might help or inspire people.

4.  Your username at PatientsLikeMe is Yoga Lover.  What role does yoga play in your self care?

I was taking yoga from a great yoga instructor when I chose my username. Yoga is excellent for increasing strength, flexibility, relaxation, learning about mindfulness, and more. Not every yoga instructor focuses on spirituality, but mine did. We had candles burning, dim lighting, a picture of B.K.S. Iyengar and houseplants in the studio. We also had short discussions before class that everyone was encouraged to participate in.

Later in the class, as we went through the poses, he would talk to us about things we should be focusing on. Something that helped me the most was when he explained that just as a stomach digests, a mind thinks. The thoughts aren’t that important. We can decide who we are and what we want to do regardless of our thoughts. We don’t need to be embarrassed about our thoughts or judgmental of them, we just need to observe them.  He recommended reading the book Light on Yoga Sutras of Patanjali, by B.K.S Iyengar, which I did. If you are interested in yoga, I would recommend it highly.

Because of financial considerations, I stopped attending that yoga class and joined my local YMCA. I take a spinning class three times a week and walk on the off days, as well as doing some swimming and strength training. I’m not going to a yoga class currently, but I still focus on things I learned in yoga about breathing, meditation, relaxation and mindfulness.


Two Mental Health Videos You Need to See

Posted May 18th, 2011 by

Did you know that May is Mental Health Awareness Month?

To help put a face on mental health conditions, which affect one in four American adults, we wanted to share two amazing patient stories. They both created heartfelt videos as part of our PatientsLikeMe “Express Yourself Video Contest,” and we’re proud of what a great job they did.

Check out each video to learn what it’s like to live with a mental health condition – including bipolar II disorder and major depression – and how connecting with other patients can help.

PatientsLikeMe member emorgan


Tell the World: Video Contest Update

Posted April 20th, 2011 by

The countdown is on! There are only two weeks left for our patients to enter the PatientsLikeMe “Express Yourself” Video Contest and have a chance to win one of five American Express gift cards ranging from $150-500.

If you haven’t heard, we are asking patients to create a video of three minutes or less that answers the question, “How has PatientsLikeMe changed your life?” If you are thinking of entering the contest but not sure how to express yourself, here are some examples of how patients have answered this question:

  • “PatientsLikeMe is the main reason that I concluded I had been mis-diagnosed depressive, instead of bipolar, and just recently decided to try new medication.”
  • “For years, I had always taken just 10mg of Baclofen. I was told long ago by my neurologist that “too much Baclofen can cause weak legs.” Then I sign up here, take a peek at what you guys are doing, and find out I don’t take enough Baclofen to deal with my symptoms. Give the neurologist a call, no problem, and [I am] much, much better.”
  • “PatientsLikeMe has changed my life.  This is my outlet.  I shared and poured my heart…and connected with hundreds of people around the world.”

Wondering how would you express such things on video?  Check out the submission below from one of our first contest entrants, Roulette67.  Her video is titled “I Am Not Alone,” and it discusses living with bipolar II disorder.  “I’m bipolar, it’s not a brand on my arm, it’s not a scarlet letter on my chest,” she says in the video.  “It’s part of me, but it’s not me.”

Do you have your own story to share? Tell it to the camera, like Roulette67. Or you could sing a song. Or perhaps combine photos with text to illustrate your experience. There are countless ways to express yourself using video, so be creative!

If you’re feeling inspired to enter, read the complete rules and guidelines before you get started, and don’t forget that May 1, 2011, at 11:59 p.m. EDT is the official submission deadline.

PatientsLikeMe member afleishman


A Year in Review: PatientsLikeMe in 2009

Posted December 31st, 2009 by

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year!

Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of img_8741-300x225our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions).  Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ’09:

I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”

“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis berlin-lithium-poster-207x3001AGM in Athens and updates on our lithium study at the International ALS/MND Symposium).  In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform.  By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question:  “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.

The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.”  Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing.  Here are some highlights from ’09:

  • The National SummitInnovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events.  Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil.  You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.
  • Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.

Happy New Year!
– The PatientsLikeMe Team


The Patient Voice – Loud and Clear

Posted September 1st, 2009 by

We are excited to present the first member video for the PatientsLikeMe Mood community and what better way to kick it off than with one that represents the voice of the patient.

In June, we launched The Patient Voice with the inaugural report on inpatient therapy, a topic often discussed by our Mood community members.  At the time of the report, 63% of patients on our site reported an efficacy of “moderate” or “major” for inpatient therapy.

Many patients have already benefited from the information in the report, so we decided to create a video that highlights our patient members’ tips and experiences. Check it out on our YouTube or Facebook page, but if you visit the latter don’t forget to become our fan!

If you want to know more about patients’ experiences with inpatient therapy, you can download the full report here. It includes even more tips and personal stories, interesting facts about the PatientsLikeMe community and a worksheet that will help you make the most out of your hospital stay. Of course, none of this would have been possible if patients like you were not willing to share. We are always eager to hear what you have to say, so please share on.

Once again, special thanks to our summer intern, Shane, for his work on the video!


The Patient Voice: Interview with Mountabora (Mood Conditions Community)

Posted June 4th, 2009 by

Yesterday, we announced a new report called The Patient Voice for Inpatient Therapy, which highlights patients’ top tips for having a positive inpatient therapy experience.  Maureen Oakes, community manager for PatientsLikeMe Mood Conditions Community (for people with depression and other mood conditions), recently interviewed 3-star member, Mountabora, about her experiences with hospitalization.   Here’s what she had to say:

picture-41 (Maureen) You note in your member profile that you have been hospitalized a few times. What were those experiences like?
picture-11 (Mountabora) Being in a psychiatric hospital is kind of like being at summer camp. You’re away from home, living in close quarters with strange people, and participating in structured group activities which may or may not have a purpose. There are a lot of rules, and you lose privileges if you don’t follow them. You have to get up way too early in the morning and eat three meals a day at the cafeteria.

There’s a lot of emphasis on learning coping skills, typically through classes and worksheets. There’s also a lot of emphasis on medication; most patients are on at least two or three psychoactive drugs. You go to therapy and you see a psychiatrist, but much more often than you would if you weren’t hospitalized. It’s basically a condensed version of what you’d get as an outpatient, in a controlled environment.

I’ve been treated at six different hospitals in four states over the last ten years, and I’ve had both wonderful and horrible experiences. The state hospital I went to was more like a prison than a hospital. Patients were restrained and drugged against their will, the nursing staff obviously didn’t care, and I had to wait days to see a psychiatrist and then threaten to take them to court before they’d discharge me. The private psychiatric hospitals were much better, with specially trained art, exercise, and family therapists, productive classes and groups, and lots of one-on-one time with nurses, therapists, and psychiatrists. Unfortunately, this seems to be a situation where you really do get what you pay for.

picture-41 (Maureen) If you could tell other patients one thing about having a positive inpatient therapy (or hospitalization) experience, what would it be?
picture-11 (Mountabora) Hospitalization is very expensive, so treat it like you would any major purchase. Discuss options with your psychiatrist and have a clear idea of why you’re going in and what you’re expecting to get out of it. Once you’re there, take full advantage of the services the hospital offers. Learn as much as you can from both staff and fellow patients, participate fully in groups and individual therapy, and make the most of the (hopefully) peaceful and structured atmosphere.

I also would recommend that anyone with a serious mental illness take some time to learn about patients’ rights in their state or country. You never know when you’ll be put into a situation where you have to advocate for yourself.

picture-41 (Maureen) In a our new report, The Patient Voice on Inpatient Therapy, we summarize top themes cited by our community members regarding their positive inpatient therapy experiences. Do you have anything to add regarding these themes?
picture-11 (Mountabora) I really wish hospitals would put more emphasis on coordination of care right from the start. Almost every time I’ve been hospitalized, I’ve been thrown in with an unfamiliar psychiatrist who gives me a new diagnosis and a completely different set of medications. It took a lot of painful trial and error for my psychiatrist to come up with this diagnosis and treatment plan, and I’d really rather not have to go through it all over again every time I go in to the hospital.
picture-41 (Maureen) You’ve been a very active member of the PatientsLikeMe community for a while now. What do you find helpful about using the site?
picture-11 (Mountabora) I like being able to keep a centralized record of my mood and treatment history that I can use as a reference or share with treatment providers. Theoretically, this information gets transferred from provider to provider, but in reality, I know that a lot of things have fallen through the cracks over the years and my quality of care depends on me being able to give an accurate account of what’s happened so far. I wish I had started this when I was first diagnosed. Maybe I wouldn’t have been hospitalized so much.
picture-41 (Maureen) Thank you for sharing your story and experiences with our PatientsLikeMe community, and with the mood conditions community at-large!

Introducing “The Patient Voice” – First up? Inpatient Therapy

Posted June 3rd, 2009 by

Today’s patient has a loud and strong voice.  At PatientsLikeMe, we hear you.  You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.”

With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that takes what you, the patient, knows and shares it with you, the patient community at-large.  For obvious reasons, we’re calling it The Patient Voice.picture-4

The Patient Voice is a collection of wisdom, sentiments and experiences shared by patients like you regarding important issues you face today.  The reports include PatientsLikeMe member tips, suggested checklists and questions to ask yourself, and real-world patient experiences, as well as some fun facts from about the PatientsLikeMe community.

The first report is from our Mood Conditions Community, representing patients with depression, anxiety, bipolar, OCD and PTSD, on the topic of inpatient therapy (or hospitalization).   It’s a topic that comes up quite a bit in our forum, and patients are openly sharing their positive (and negative) experiences with one another.  We’re now sharing some of the positive experiences with you.  Take a look at the free report and let us know what you think.  Share it with your friends and loved ones who might find it useful.  And, please, join the conversation on PatientsLikeMe today.  You have a voice, so let’s hear it!

PatientsLikeMe member dwilliams


Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In

Posted March 27th, 2009 by

In a recent blog post by New York Times’ Tara Parker-Pope, PsychCentral highlights “The 12 Most Annoying Habits of Therapists.”  Launched a year ago this week, our very own Mood community has more than 1,300 patients using “Individual Therapy” as a treatment for their condition.  We asked them to tell us some of the habits they find most annoying and elaborate on the ones outlined by Parker-Pope.  Here’s what they had to say about some of those respect issues:

  • I had a [therapist] fall asleep during the session!  I walked out (without paying of course).
  • My biggest peeve is with therapists who refuse to work in conjunction with my psychiatrist and his diagnosis.
  • I hate it when therapists talk down to me. I’m crazy, not stupid!
  • [Therapists:]  Don’t look at patients as if they’re wacky or as if they’ve just said something wacky.  We are always reading faces and reactions, the last person we need to be judged by is our therapist.  Be mindful of how “tuned in” we are to your body language.
  • I love my current therapist, but…he once took a call in the middle of a session, obviously from a friend or family member (nothing critical), it had to do with whether or not they should order pizza…I don’t know if he was trying to get me to react or what, but with low self-esteem already, his disregard for my time and his placing more importance on ordering a pizza than on helping me really made me angry and hurt.
  • I spent 30+ years in the business world, so things like consistent lateness, taking private phone calls on my time, clock watching and snacking while in session are all things one would never do when with a business client.  Perhaps therapists should take a few business courses.

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On the flip side, many of our members (those with depression, anxiety, bipolar, OCD, PTSD) had some positive things to share about their therapy experiences.  Here are a few of those comments:

  • My doctor’s advice: ‘don’t let go of the things you enjoy doing.’  I decided to fight for those things–reading, creativity, enjoying the outdoors, animals, writing with fountain pens, hats, etc.–because they’re part of what makes me ‘me.’  I think it was great advice and should be passed on to other people.
  • [My therapist] is flexible about what kind of therapy works for me from week to week.  She has a lot of resources to recommend, and when one isn’t my thing, we try another. This goes along with flexibility, but it also shows that she knows her stuff. She has helped me find everything from relaxation tapes to yoga classes to PTSD workbooks.
  • My therapist won’t let me get away with anything. I think this is a very good trait in a therapist. She also believes I know my own body better than anyone else.
  • She is never shy about throwing me a compliment. In fact she has told me several times that she admires certain qualities about myself.

Got some experiences to share?  We’d love to hear ’em!  Leave a comment below.

PatientsLikeMe member lscanlon