144 posts in the category “Mood Conditions”

Schizophrenia: Living well and working towards a cure

Posted May 18th, 2015 by

Today marks the start of Schizophrenia Awareness Week, and what better way to begin than with the story of an inspiring woman who is living with schizophrenia and advocating for better treatments.

Dr. Elyn Saks was diagnosed with schizophrenia as a college student. At first she struggled with her diagnosis, and it took a while before she found treatments that worked for her. Ultimately she excelled in her studies and became the Chair Professor of Law at USC’s Gould School of Law. She even won a MacArthur Genius Grant for her work in mental health research and advocacy. Recently, she sat down with Brian Staglin of Brain Waves, a video program sponsored by the International Mental Health Research Organization (IMHRO). Dr. Saks talked about her experience with schizophrenia and her work for the empathic treatment of people with mental illness.

Dr. Saks’ story is just one of many. Schizophrenia affects 2.5 million adults in the United States alone, and thousands more have not been officially diagnosed.1 Schizophrenia can be difficult to recognize, as some of the symptoms, like mood swings, impulsive behavior and hallucinations (seeing or hearing things that aren’t there), are common in other mental health conditions. Schizophrenia may also be mistaken for depression, since some people with schizophrenia have a flat mood and slowed speech, or they withdraw from friends and family.2

Stay tuned for a special “In My Own Words” entry from a PatientsLikeMe member.  And if you’ve been diagnosed with schizophrenia, join more than 700 others in the online community.

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You are not alone in brain injury

Posted March 16th, 2015 by

#NotAloneinBrainInjury. That’s the overarching theme of the 2015 Brain Injury Awareness Month, organized by the Brian Injury Association of America (BIAA). 2.5 million Americans survive a traumatic brain injury (TBI) each year, and and it’s time to raise awareness for the 5.3 million people currently living with a brain injury.1

In addition, Wednesday, March 18 is “Brain Injury Awareness Day.” There are many different ways to get involved – you can share one of six promotional posters created by the BIAA, listen to several public service announcements and even get involved with the TBI Portrait Project.

Finally, don’t forget to share your support for TBI awareness on social media through the #NotAloneinBrainInjury hashtag. Just click on the Twitter icon below or spread the word on your Facebook page.

Our co-founder, Jamie Heywood, said it best when discussing PatientsLikeMe’s recent partnership with One Mind, a non-profit organization dedicated to benefiting all affected by brain illness and injury:

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions. 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.”

If you’ve been recently diagnosed with a TBI, join the more than 1,500 PatientsLikeMe members living with different traumatic brain injuries. The community is ready to answer any and every question you might have.

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1 http://www.biausa.org/brain-injury-awareness-month.htm


“I am slowly building my self-esteem “ – PatientsLikeMe member SuperChick shares about her journey with PTSD

Posted March 4th, 2015 by

PatientsLikeMe member SuperChick is a veteran living with post traumatic stress disorder (PTSD), and her story is one of learning to cope with emotions and frustrations. She’s living proof that things can get better – she’s a loving mother of two, has a great husband and is managing several other mental health conditions. Below, she shared about the sexual abuse she experienced while serving in the military and explained how her previous husband physically assaulted her. Superchick also describes the symptoms of her PTSD and how the community on PatientsLikeMe has been “a huge help” to her. Read about her journey below.

Note: SuperChick shares about her story of abuse, which may be triggering.

Can you speak a little about your PTSD and what led to your diagnosis in 1986?

I was originally diagnosed with PTSD after being raped while I was in the military. I believe I was more susceptible because I had been molested as a child and didn’t have good family support or dynamics. I worked through it, but was diagnosed again in 2007 after leaving a severely abusive marriage, where I was raped multiple times and choked at least twice. I was emotionally abused and didn’t even realize it was abuse. I stayed for fourteen years trying to change myself because my ex-husband had convinced me I was the problem and couldn’t do anything right. It destroyed my self-esteem and any healthy coping skills I had.

What are some of the symptoms you experience because of your PTSD?

Since being diagnosed with PTSD the second time, I have numbed my emotions, I experience anxiety, and I have trouble falling and staying asleep even though I may be thoroughly exhausted and am taking medications for sleep. Sometimes I am afraid to go to sleep. I sometimes have nightmares, although not nearly as often as I used to. I have difficulty fully trusting my current husband, or people in general for that matter, even though I know he would never harm me and treats me with tremendous respect. I have suffered from a very low self-esteem and for a long time felt responsible for the trauma. I react more intensely to triggering situations than other people would. I am slowly building my self-esteem, but that is still a struggle for me.

You’ve got two wonderful children – how does PTSD affect your family life?

Because my children spend half their time with their father, I worry about them when they’re with him because I know how abusive he can be. I worry about them being sexually abused or harmed and am very protective of them around anyone I don’t know very well. I’m afraid of my daughter becoming involved in abusive relationships when she grows older and my son becoming an abuser. In a positive sense, I am very affectionate and make time to listen to them and engage in activities I know they enjoy because I want them to experience healthy love. I am remarried to a man who truly loves and respects me. My husband and I try to model a healthy relationship for them.

It’s hard for my husband and me, though. The fact that I still have to be involved with my ex-husband and am told over and over again by the court system, child protective services, and all the mediators we’ve worked with that I have to get along with him makes things very difficult. It minimizes or completely dismisses the trauma I’ve experienced. My husband wants to protect me, and this makes him feel frustrated and powerless. There is no way to get along with a narcissist and abuser. I want to move on and not have him as the focus of our lives, but then something happens and it starts all over again. Sometimes my husband feels shut down when he suggests something I have already tried and found to be futile.

I’ve come to realize that while I have been dealing with all of this for over seven years, he came into this halfway through and is in a different place than I am, having to deal with emotions and frustrations I’ve already experienced and dealt with. He is beginning to understand that his approach can sometimes trigger my symptoms, so when he feels like I’m shutting him down I am actually trying not to go back to that pain. It’s hard in that respect for me to be there for him. We plan to go back to family therapy to help develop a healthier focus for our lives. We’ve been dealing with adversity that has out of necessity been the major focus of our lives, but now we need to move on.

How have you learned to live and cope with your PTSD?

I’ve been in therapy since before I left my marriage, and finally found a therapist who has helped me overcome many of the symptoms of PTSD through EMDR (eye movement desensitization and reprocessing), which helps change the way I react to the memories. For the most part, I am able to remember the trauma without it bothering me. I still experience triggers, but am able to process the emotions using cognitive behavioral therapy skills and journaling. When I am triggered, I make sure I take care of myself through prayer, talking with my husband and therapist, and doing things that help me relax, ground me, and fully engage my mind, like playing my flute and piano.

The community on PatientsLikeMe has been a huge help. I’ve been able to get support from people all over who have been through what I was going through, and that has helped me cope and make better decisions about my health. I was able to see what my main issues were through the mood map and monitor the effectiveness of my medications. There were many times the PatientsLikeMe community were far more helpful than my doctor.

You’re also living with bipolar II, depression and a few others conditions – how do these affect each other?

I believe the PTSD triggered the bipolar, because I never had symptoms until after I left my marriage and had symptoms of severe PTSD. As I look at symptoms of PTSD, it explains a lot of behaviors I didn’t fully understand, like self-harm, which began as I started to talk about and process the trauma of long-term sexual abuse in my previous marriage. As I’ve worked through many of the issues causing the PTSD, I’ve found that I no longer experience the symptoms of bipolar and have been able to decrease my medications. If I do experience depression now, it is short-lived and related to a specific experience.

As a veteran, what is one special message you’d send to your fellow veterans also living with PTSD?

I think veterans have experiences that only people who have been in the military can understand. Military units are like family, and I find I miss that sense of community now that I’m retired. Meeting with other veterans, especially those with shared experiences of PTSD, may be helpful because those people are more likely to relate well.

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“You can get better” – PatientsLikeMe member jeffperry1134 shares about his journey with PTSD

Posted February 12th, 2015 by

Many veterans are a part of the PTSD community on PatientsLikeMe, and recently, jeffperry1134 spoke about his everyday life after returning home from military service. In his interview, he touched upon his deployment to Somalia in the early 1990s, and how his memories of Africa cause daily symptoms like anxiety, hallucinations and nightmares. But despite everything, Jeff remains upbeat and reminds us that there is always hope. Scroll down to read what he had to say.

Note: the account below is graphic, which may be triggering.

Can you tell us a little about your military service and your early experiences with PTSD?

I entered the military in the Army in July 1990 as a heavy wheeled mechanic. I went through basic training and AIT at Ft. Jackson, SC. I went to my first permanent duty station in December in Mannheim, Germany. I was assigned to a Chinook helicopter unit. My unit was very relaxed and we got along well. As soon as the war broke out we received our deployment orders. We returned home in July from deployment. My PTSD was early onset after returning from Desert Storm. I experienced nightmares, depression, alcohol abuse and drug abuse. At the time I was a 19 year old alone in Germany away from my family struggling with this mental illness. My supervisors were able to help me hide my problems well and it was not discovered at that time. I feared being singled out for having these problems. Three days before it was my time to PCS stateside our company was deployed again, this time we were going to Somalia. I was told I could leave but I felt guilty so I volunteered to stay and deploy with my teammates. We deployed in November 1992 and returned in June 1993. During my time in Somalia it was rough. During the deployment my job was perimeter guard duty and body remover. During the deployment I used local drugs of Khat and Opium Poppies to control the symptoms of my illness. After returning from Somalia not only did I have the symptoms that I had earlier but now I was hallucinating hearing voices, smelling smells and seeing flashes. I went stateside a week after we returned. I went to Ft. Leonard Wood, MO in an engineer unit that was strict. I made a huge impression with my skills as a mechanic and a soldier so when I was having problems my superiors hid it for me to keep me out of trouble. I did get in trouble once after a night of heavy drinking and smoking marijuana and was given an article-15 for being drunk on duty. Before that day I had still considered myself as a career soldier and I decided then that I was not going to re-enlist. I spent the rest of my military time waiting to get out and finally July 1994 came and I was out and had a job at a local car dealership as a mechanic. After working a while I got into a verbal confrontation that turned physical with the business owner and had to be removed by the police from the dealership. After that my thinking became bizarre and very hyper-vigilant. I took newspaper clippings and taped them to a door so it would motivate me to exercise harder and be ready if I were ever in a life or death situation. At the time I was working with a great therapist and she did wonders for me keeping me stable. She convinced me to take my medications and stop drinking daily.

What were your feelings after being officially diagnosed? 

I was blown away when I was diagnosed in 1995 after a suicide attempt that ended up with me being hospitalized on a psych unit for a week. My sister walked in on me at my apartment with a loaded gun in my mouth. I was resistant to treatment or even acknowledging that I had this illness. I was linked up with a therapist and psychiatrist before leaving the hospital.

What are some of the symptoms you experience on a daily basis?

On a daily basis I usually deal with a lot of anxiety, some depression, occasional hallucinations and nightmares. On a bad day I will have sensory hallucinations with me smelling dead bodies, burning flesh or cordite. Usually when that happens I get physically sick.

You recently completed the Mood Map Survey on your PatientsLikeMe profile – what have you learned about your PTSD from your tracking tools?

I learned that my PTSD is not as well managed as I would like it. It made me press my doctor to give me an antipsychotic medication and I have a new therapist at the VA that is working hard to help me identify when my symptoms are becoming worse.

By sharing your story, what do you hope to teach others about PTSD?

I just wanted to show that you can get better and that there is hope and that they can get through it.

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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military.

Like many others who are living with chronic conditions, the injuries our military men and women sustain are not always visible. Thousands of veterans are affected by post-traumatic stress disorder (PTSD), 30,000 have been diagnosed with a traumatic brain injury (TBI) since 2000 and many others are living with depression. Sometimes their symptoms don’t even manifest until many years after their service.

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll 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.

If you’re looking to learn more about US veterans, head to your nearest book store and grab a copy of “For Love of Country,” Howard Schultz’s and Rajiv Chandrasekaran’s new book (just released on November 4). Check out the video synopsis below:

 

There’s also the Concert for Valor today – it’s a free live event that is being organized on the National Mall in Washington, D.C. for veteran’s awareness. If you can’t make it in person, tune in on iHeartRADIO.

If you’re a veteran living with PTS or TBI, you can find others and connect to people who understand what you’re going through on PatientsLikeMe. There are more than 4,000 of members in the Veterans Forum, and every day, veterans are learning more about their health and the best ways to cope. Share a bond, and live better, together.

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“I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines

Posted October 21st, 2014 by

PatientsLikeMe member Lucas (Freedom666420), or Sarge, as his friends and fellow soldiers call him, served in the Marines during two tours in Iraq and was injured while literally hoisting his entire squad up and over a wall to take cover from enemy fire. He recently spoke with Sarah, a PatientsLikeMe community moderator, and shared about his experiences in an interview. Lucas talked about his recurring insomnia and nightmares, and how quitting alcohol and speaking with fellow veterans has helped him cope with his PTSD. Read what he had to say below.

Will you tell us a little about your story?
I enlisted in the military right before I turned 18, graduated basic training about a week after I turned 18. I was in the Marine Corps for about three years total after all the paper work was done. I was discharged medically- honorable retirement discharge because I was injured.

I was on my second tour, about half way through when we were taking air fire and I was trying to get everybody over the wall and I looked back, after I got the last person over, I looked back to make sure everything was clear and that’s when I saw an RPG coming at us and I pushed the last guy over the way and I was blown up. I was hit by shrapnel and the explosion blew me about 61 feet past the wall and when I landed I shattered my right heel and I had shrapnel across my face and shrapnel in my right hip. I walked back to base.

You want to make sure, whenever you’re a squad leader, you want to make sure everyone is safe before you are.

How many people did you get over the wall that day?
I got 22 people over the wall that day.

Wow, you’re such a hero.
I don’t say I’m a hero, I was just doing my job.  I like to be recognized for some things but I served in the military, I was just doing my job.

What are your experiences living with PTSD?
I have nightmares. Basically I have insomnia because I don’t sleep. Every time I do sleep, all I think about are my brothers that didn’t get to go home to their families. And the men that I served with all the way through basic SOI (School of Infantry) training and all my other training, there were several that I went with and I actually went to their families and gave them all the information they needed to know. I wanted them to know personally what happened and how everything went. Because most families never get closure from the military, they just get a statement saying your son (or daughter) has been KIA (killed in action) and they never give a reason of how they went. I wanted everyone’s family in my platoon to know how they went. I know my family would want closure if I were killed.

Are you currently treating your PTSD?
It’s something that I don’t know that I’m ever going to get past. There are things that are drilled into my mind right now that I don’t know that I’m ever going to get past.

That’s why the VA wanted to send me to a counselor and I told them I’m not going to go talk to someone who’s never been there before. There are people that I’ll talk to about some stuff, and there are people I won’t talk to.

It’s one of those things where you have to be very comfortable with the person you’re talking to. I had a horrible experience when I was younger with a counselor, so I don’t like counselors. I’ve been through ten of them.

I think I’m just better off going to the VFW (Veterans of Foreign Wars) because there’s one right in my town. I quit drinking so I go and drink a non-alcoholic beer or soda and I talk to them. I quit drinking a couple years after the military because for the first two and a half years there wasn’t a day I went sober. I drank constantly. There were days when people worried about me because I was always drinking. But I was able to sleep. I needed to be able to sleep, so I slept. I’ve been sober for going on 4 ½ years now, but I just wish I could close my eyes and not see faces.

What helps you cope?
Mostly I talk to another Vietnam vet. It just seems like talking about it makes it a lot better. It’s very helpful when you talk to somebody about it. I feel like you have to talk to somebody else that’s been through something similar. If you find an older man who maybe fought in Vietnam, they give you great input on everything.

It’s better to connect with somebody who you can open up to because you’re able to speak about it and try to get some relief for yourself because if you keep it all bottled up inside, it just gets worse from there. You know before I started talking to the Vietnam veteran who I’m talking to, there were plenty of times that I thought about killing myself. But after talking to him for the past two years now, I’ve honestly begun to feel like I don’t want to anymore. I’ve started a family and things are going better for me, I just still have nightmares and flashbacks, but things get better when you actually talk to somebody that has been through something similar.

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It’s time to recognize mental illness in October

Posted October 6th, 2014 by

Think about this for a second; according to the National Alliance of Mental Illness (NAMI) 1 in 4 people, or 25% of American adults, will be diagnosed with a mental illness this year. On top of that, 20 percent of American children (1 in 5) will also be diagnosed. And so for 7 days, October 5th to 11th, we’ll be spreading the word for Mental Illness Awareness Week (MIAW).

What exactly is a mental illness? According to NAMI, A mental illness is a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. [They] are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life.”

There are many types of mental illnesses. The list includes conditions like post-traumatic stress disorder, bipolar II, depression, schizophrenia and more. MIAW is about recognizing the effects of every condition and learning what it’s like to live day-to-day with a mental illness.

This week, you can get involved by reading and sharing NAMI’s fact sheet on mental illness and using NAMI’s social media badges and images on Facebook, Twitter and other sites. Don’t forget to use the hashtag #MIAW14 if you are sharing your story online. And if you’re living with a mental illness, reach out to the mental health community on PatientsLikeMe – there, you’ll find others who know exactly what you’re going through.

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Getting to know our 2014 Team of Advisors – Dana

Posted October 3rd, 2014 by

Just last month, we announced the coming together of our first-ever, patient-only Team of Advisors – a group of 14 PatientsLikeMe members that will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 team? We posted an open call for applications in the forums, and were blown away by the response! The team includes veterans, nurses, social workers, academics and advocates; all living with different conditions. Over the coming months, we’d like to introduce you to each and every one of them in a new blog series: Getting to know our 2014 Team of Advisors. First up, Dana.

About Dana (aka roulette67)

Dana is a poet and screenplay writer living in New Jersey. She is very active in the Mental Health and Behavior forum. She is open to discussing the ups and downs of living with bipolar II and helping others through their journey. She has been through weight loss surgery three times and is very interested in the connectivity of diet to mental health—she believes that psychiatrist’s need to be aware of the whole person, and have an understanding about diet, physical health and mental health, not just focus on medication.

Dana is passionate about fighting the stigma of mental illness, which causes people to self-medicate. She believes there needs to be more positive examples on television. Here’s a fun fact about Dana: she won the people’s choice (top voted by peers) award in the PatientsLikeMe video contest for her video, I am not alone.

Dana on being part of the Team of Advisors 

It’s really quite an honor, considering the amount of people on the site. I’ve discovered what a wonderful group the advisor’s are and have had some meaningful conversations with a few of them online. I appreciate the opportunity in helping others in anyway I can to understand what we go thru on a daily basis. By getting a glimpse into the life of someone with an illness, I feel that I am educating them and helping them understand a person they might love or know or have dealings with in their own lives. And hopefully open their eyes a bit. 

Dana’s view on patient centeredness

Like those commercials for the Cancer Institute, where there are more than one doctor or professional to treat the whole patient instead of just the symptoms of one illness. Many times when you are mentally ill, it seems your body also suffers in physical ways, your diet also becomes poor. Patient-centered to me means that the doctor should look at your diet, your physical and your mental health. Just asking if you are taking your meds is not enough. Psychiatrist seem like pill dispensers and then dismiss you from their office and therapists talk, but really have no interest in the meds. More of a team effort is needed.

Dana’s contribution to researchers at the University of Maryland

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. As one of the working sessions we invited Dana to join us remotely, to discuss her journey with bipolar II and share her perspective and expertise as a patient. Here’s what she experienced:

I was a little nervous at first, hoping I was able to answer their questions and provide them with what they needed to know. The questions were pretty specific at times and I found that to be interesting. Because it showed me that they really wanted to know and understand my views. I enjoyed the experience and hope that my interview helped them in some way.

I was very honest. Explained what it is like to suddenly become bipolar when you had no reference point in your life to prepare you for the physical and mental storm it brings. I stressed how it’s a 24/7 – 365 a day battle, even when the meds are working. At least in my experience it has been. I feel this was an important point to make and that they should consider this when dealing with participants in their research.

I would tell researchers moving forward to always remember the patient is more than a test subject. That what you are researching addresses them on a daily basis and some days, the best they can do is just get out of bed. That some type of break should be considered and might even work to their advantage.

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“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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Dispelling the myths of schizophrenia

Posted May 20th, 2014 by


May is all about mental health awareness, and we’re continuing the trend by recognizing Schizophrenia Awareness Week (May 19 – 26). Schizophrenia is a chronic neurological condition that affects people’s sensory perceptions and sense of being, and it’s time to dispel the myths about the condition.

Here are some myths and facts about schizophrenia from Northeast Ohio Medical University:1

Myth: Everyone who has schizophrenia knows that they have an illness.
Fact:  Many people who have schizophrenia wait months, sometimes years, and suffer needlessly before a proper diagnosis is made and treatment begins.

Myth: People with schizophrenia are dangerous.
Fact: Studies indicate that people receiving treatment for schizophrenia are no more dangerous than the rest of the population.

Myth: People with schizophrenia have split or multiple personalities.
Fact: Schizophrenia is not a split personality disorder in any way.

The National Institute of Mental Health (NIMH) states that schizophrenia can cause extreme paranoia, along with mental changes like hearing voices others cannot, feeling very agitated or talking without making sense.2 Schizophrenia affects men and women equally, and although it’s normally diagnosed in adults over the age of 45, it is also seen in children. There is no cure for the condition, but antipsychotic drugs are used to manage the symptoms of schizophrenia, and many PatientsLikeMe community members are donating data on their treatments. Check out the NIMH’s fact page on schizophrenia to learn more.

Over the next week, many organizations across the U.S. will be raising awareness for schizophrenia through different events. Here are a couple examples:

If you’ve been diagnosed, you’re not alone – hundreds of PatientsLikeMe members are living with schizophrenia, and they’re sharing their stories in the forum. Take a moment to connect with others who are experiencing schizophrenia in the same ways as you.

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1 http://www.neomed.edu/academics/bestcenter/helpendstigma/myths-and-facts-about-schizophrenia

2 http://www.nimh.nih.gov/health/topics/schizophrenia/index.shtml


It’s time to recognize National Anxiety and Depression Week

Posted May 5th, 2014 by

We already posted about raising awareness for mental health, and now we’re recognizing National Anxiety and Depression Awareness Week (May 5-10). Since 1994, the week has been organized by Freedom from Fear, a national non-profit focused on raising awareness for depression and anxiety.

If you haven’t heard much about these two conditions, here are some quick facts from the Anxiety and Depression Association of America (ADAA):

 

  • An estimated 40 million American adults live with anxiety.1
  • Only one third of these people receive treatment.1
  • At any time, 3% to 5% of all people are experiencing depression.2
  • The lifetime risk of depression is about 17%.2


Nearly one-half of those diagnosed with depression are also diagnosed with an anxiety.2 According to the ADAA, common anxiety symptoms can range from increased worry and social tension to extreme restlessness or general fatigue, and often, these symptoms can be magnified by depression.

Over 17,000 PatientsLikeMe members report being diagnosed with either generalized anxiety or major depression, including almost 7,000 who are living with both conditions. If you’re experiencing anxiety or depression, you’re not alone – you can share your story in the forum and find support on any topic. The PatientsLikeMe mood community is always ready to answer any question, no matter how complex, and members are always sharing their personal health data to help others just like you.

Finally, we mentioned it already, but Steubenville will soon be sharing about navigating the ups and downs of her bipolar II diagnosis on the blog in honor of Mental Health Month and National Anxiety and Depression Week. Keep your eyes peeled!

 

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1 https://www.adaa.org/understanding-anxiety

2 https://www.adaa.org/understanding-anxiety/depression


“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!

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


Did you know it’s Mental Illness Awareness Week?

Posted October 4th, 2013 by

NAMI awareness

The U.S. Congress has recognized the week of October 6th as Mental Illness Awareness Week (MIAW), and if you or anyone you know is living with a mental health or neurological condition, it’s time to raise awareness and share your experiences.

Serious mental illnesses cover a lot of different conditions (including depression, schizophrenia and bipolar disorder), and they affect almost five percent of U.S. adults, millions of people.[1] What’s more, the symptoms for each condition described as a mental illness vary greatly. We all have a lot to learn about living with mental illness, and here at PatientsLikeMe, we believe one of the best ways we can live better is through sharing our journeys with one another.

So what else is going on during the week? For starters, MIAW coincides with National Depression Screening Day on October 10th, and you can find out more information about various screenings on the Screening for Mental Health website. The National Alliance on Mental Illness (NAMI) has dozens of other activities planned, and if you are wondering what you can do to help, check out their list of suggestions. You can even share the NAMI’s promotional poster with your friends and family.

The mental health community on PatientsLikeMe loves to chat about everything from general mood updates and photo-blogging to Ryan Gosling, and this week is the perfect time to join the conversation. On PatientsLikeMe, there are over 50,000 members sharing their experiences in the mental health and behavior forums – click here to add your voice to the community today.


[1] http://www.nimh.nih.gov/statistics/pdf/NSDUH-SMI-Adults.pdf