10 posts from June, 2014

Keeping up awareness for PTSD

Posted June 27th, 2014 by

 

Back in the beginning of June, we posted about PTSD Awareness Month, and now, we’re keeping the awareness going strong for PTSD Awareness Day. To help put a face on PTSD, we shared a bunch of videos from AboutFace, a website produced by the National Center for PTSD that’s all about telling real stories of veterans living with the condition. To get a different perspective, we also thought we’d share a few of their video interviews with clinicians. Here are some to check out…

 

Stephanie Dove
Social worker

My advice to you- “I meet a lot of veterans who don’t want to come to the VA for treatment … because they’re afraid of the stigma. PTSD is a normal, understandable reaction to the experiences that many veterans have been through…”

Dr. Ron Acierno
Clinical Psychologist

How to know you’re ready for help- “Well, if you wait, you’re never going to be ready. Getting ready for treatment is like ‘how do I know I’m ready to get in better shape?’ If you’re feeling pain, you’re ready for treatment.”

Dr. Sonya Norman
Clinical Psychologist

What treatment can do for you- “Feeling better can mean so many different things to different people. For some people enjoying their marriage again, enjoying their family …. it could ‘I’m just enjoying life again.’”

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

Share this post on twitter and help spread the word for PTSD Awareness Day.

 


Awareness, prevention, education, and family – the four goals of Men’s Health Month

Posted June 26th, 2014 by

 

This June marks the 20th anniversary of Men’s Health Month, first created by the U.S. Congress and a few other organizations in 1994. Men’s Health Month is all about heightening awareness of preventable health problems and encouraging early detection and treatment of disease among men and boys.1 This year, the campaign has four goals: awareness, prevention, education, and family.

 

 

 

Awareness: Men are at a greater risk for certain health conditions than women, besides the conditions that affect male-specific organs. This includes hypertension, high cholesterol and cancers of the skin, lungs and colon.2 But awareness isn’t just about these different conditions, it’s also about the fake treatments out there, and the Men’s Health Network has put together a great infographic that talks about counterfeit medications.

Prevention: Besides being male, many risk factors contribute to the development of these health conditions. Some of these can be managed with proper diet, exercise and other tactics, but regular screening is the best way to find a problem early. Make sure you discuss screening options with your doctor and know when and where you should go.

Education: It’s not just about raising awareness in June or even the rest of the year – it’s about teaching everyone about men’s health each and every day. As a result, the Men’s Health Network has shared a Key Health Indicators document full of information on heart disease prevalence, obesity rates and more – check it out here.

Family: If you’re a partner, brother, sister, child, cousin or even just a friend, we’re all here to support the men in our lives when they are diagnosed with a health condition.

If you’re looking to connect with others about men’s health issues, check out the forum on PatientsLikeMe – here, the men (and women) of the community chat about all things related to men’s health, and members are always happy to answer any questions you might have.

Share this post on twitter and help spread the word for men’s health.


1 http://www.menshealthmonth.org/

2 http://www.menshealthnetwork.org/library/causesofdeath.pdf


Food for thought: June edition

Posted June 18th, 2014 by

For the past couple months, we’ve been sharing about different members’ favorite foods and recipes, and we’re keeping it going with multiple sclerosis members discussing the pros and cons of smoothies, ALS patients talking about getting sleepy after steak, and the fibromyalgia community sharing about cutting foods out of their diets.

MS forum thread: Nutrition questions anyone?

“And on the other hand, some people, (myself, for instance) have resistance to green smoothies…”

“We love green smoothies. I think they taste best if you use 1/3 green stuff, 1/3 banana, and 1/3 other fruit, like berries, peaches, etc.”

“I can understand the value of smoothies, which have all the fiber blended into the drink, but juice? Not only no, but hell no.”

ALS forum thread: Could a steak make you lethargic?

“I get really tired after chewing. Steak would knock me out!” 

“My hubby has always asked for steak dinners since his dx. He says it makes him feel more energetic.”

“Try really small bites and/or mix with mashed potatoes.”

Fibromyalgia forum thread: gluten/sugar/alcohol free

“I have cut out soda and now drink seltzer water. (I like the bubbles).”

“I had to cut out the alcohol, sugar, red meat and a gluten free diet.”

“It has not been easy. I have on numerous occasions opened that cupboard door to the chocolates but then just closed it again.”

 

 


If you could share one thing… -Steven’s inspiring answer

Posted June 16th, 2014 by

PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness. Read his full interview below.

What was the first thing that went through your mind when you were diagnosed with ALS?

After the initial shock came a phase of denial and anger. Like many people with ALS, I had seen a number of doctors over a period of two years and had received several diagnoses ranging from a pinched nerve to benign fasciculation syndrome. Feeding the disbelief was my anger at the neurologist who, after performing a minimum of tests, told me I was dying and to come back when I needed a wheelchair. Since he was a jerk he couldn’t be right, right? Soon my wife and I felt a profound loss for our 4 children and for all the milestones we wouldn’t share like graduations, weddings and grandchildren.

How did your diagnosis change your everyday life?

My diagnosis brought clarity and focus as the realization set in that wallowing in fear gave ALS a victory it didn’t deserve. I am living, not dying, and we live as normally as we can while being proactive about planning for my future needs.

Looks like you’re very active on PatientsLikeMe – what tools do you use the most, and what have you learned about your condition?

I really love tracking my condition and I use the charts to help keep friends and family updated on how I’m doing. The most important thing I have learned is how different and intensely personal everyone’s journey is. Just because something works for me doesn’t mean it is right for others. The forum allows us to share experiences and build supportive relationships.

We see your daughter just got married last autumn – congrats! How did technology help you participate in the wedding?

The wedding of our oldest daughter was one of milestones I didn’t expect to witness. It was a beautiful day. The most obvious technology I used was my standing powerchair that allowed me to “walk” my daughter down the aisle and dance with her. Equally important, though, were my VPAP, Diaphragm Pacing System and PEG feeding tube, all combining to give me the strength to participate, not simply observe. We’ve also recently been blessed with our first grandchild, a girl, whom I talk to with my new eyegaze communication device.

If you could share one thing with the greater ALS community, what would it be?

Don’t let fear for the future ruin the beauty and gift of today.


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

Posted June 14th, 2014 by

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

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

The benefits of spousal support

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

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

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

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

Support from the members of PatientsLikeMe

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

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

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

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

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

Using patient charts and InstantMe tools

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

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

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

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


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

Posted June 12th, 2014 by

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

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

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

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

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

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

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

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

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

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CONTACTS

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

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


“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS

Posted June 9th, 2014 by

As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about what it’s like to be a mom living with MS, her volunteer work with Penn’s LEAPP program and the inspiration behind her MS blog Adaptolution. Read on for her full interview.

A lot of MS members have shared that finding a diagnosis isn’t always easy – what was your experience like?

For the first eight years of living with MS, the disease was not visible to those around me. However, I have not shied away from discussing my disease. If I can educate one more person about life with a chronic illness, then I could make someone else’s struggle just a bit easier because they will be encountering people who understand. Everyone around me has been supportive. It is a very private decision whether to discuss MS openly – for me, it has allowed others to come into my world a little more and chronic illnesses are isolating. People want to help if we let them. I welcome dialogues about MS wherever I go because it brings awareness to a disease that can easily hide.

To this end, I volunteered at Penn with the LEAPP program. It allows first year medical students to shadow me and see what life is like with a chronic illness. Diseases from diabetes to heart conditions are represented. I represented MS. Again, my thoughts are if I can help one of these students understand what it is like to live everyday and every moment, someone out there would benefit. Furthermore, how awesome would it be if one of these students identifies MS in rounds because of this (that happened by the way)?

http://www.thedp.com/article/2012/09/leapp-brings-medical-students-closer-to-patients

It is a completely different experience walking around with an unidentifiable disease than roaming around in a wheelchair or scooter. Once I became pregnant, my MS went into high gear. That is when I became less mobile. Rolling around in a wheelchair gives me a completely different perspective. Now life is about inclusion. If there is no ramp, I can’t go in. If a friend’s home has too many steps, I can’t go in. Due to the planning it takes for me to go places and be active, I have to reach out for help and share my struggles. Otherwise, I would be severely isolated. People stare because they cannot understand why a seemingly healthy woman is riding around in a scooter. A security guard in the Bahamas asked me if I just didn’t feel like walking around. I did not respond with anger or frustration. He learned more about neurological diseases than I’m guessing he wanted to know.

So far, I have not been judged poorly for having MS. Sharing has given me support, connections, and strength while educating others.

You just started your first blog, Adaptolution, in April – what inspired you to start blogging about your MS?

Now that MS has started pushing into the harsher stages, I find myself fighting to see hope, staying above water, and staying positive. There will be days where the pain becomes overbearing, the exhaustion cumbersome and everything stacks up. In those quiet desperate moments, something positive will come along that changes the momentum to a happier, better place. My blog is finding those moments and celebrating them.

When I travel around during the day, people will stare, look at me, then look at the scooter, look at me, then look at the scooter. I am quite used to it at this point. But when my baby Aaron had that first moment of awareness of that thing mommy was riding around in, I was about to be a crying heap on the floor. He looked at me, then looked at the scooter and back at me. In that moment, I decided that my scooter was not a scooter. It was a racecar, and we sat Aaron in my lap and we drove around the house to his delight. I refuse to let the sadness and pain of this disease rule my life or my family’s life.

Walk us through a day in the life of a mom living with MS.

While I am not married, Aaron has the most amazing daddy in the world and I have a loving and supportive counterpart, Ken. I cannot say enough about how much his support helps me live this life. Now that mobility is an issue, getting up and getting dressed in the morning is the most difficult part of my day. I learned from OT that the more planning I can do the night before with preparing for the next day, the better. I have help with Aaron throughout the day and the help arrives in the morning. While I try to dress as quickly as possible so I can get in to see him (his squeal of delight in the morning is the best), it takes an enormous amount of time and effort. I get in to spend some time with him at breakfast while preparing for the day and I head out to the office. I can drive because I purchased a wheelchair van the moment I saw the writing on the wall with my mobility.

Once in the office, I work on product, talk with customers, check in with all of the staff and get as much done before I am completely wiped out. I usually leave the office at three and head home to Aaron. Once I am home with him I try to do as much as I can with him like reading to him, sharing snacks, watching Baby Einstein, and his favorite…I chase him in the scooter while he runs around in his walker. While I am blessed to have the help I need to enjoy every moment I can with Aaron, MS has changed how that occurs. My arms are too weak to pick him up, so we stay in the floor or a closed space so I can keep him safe. There is always someone around to help me with all aspects of caring for him.

By the end of the day, I am wiped out. But I am truly amazed that with as much pain, fatigue, and damage MS has done, I am living a rich, full life. There are many days where getting out of bed is not an option. The MS pain and fatigue can be unbearable. On those days I will work from home on my computer in bed, if my hands are working. Aaron will hang out with me in bed while we watch Baby Einstein. Ken will oversee the business operations so that all runs smoothly at work.

How has the MS community at PatientsLikeMe helped you learn more about your MS?

PLM has been an amazing resource for me during the years. It has helped me most with navigating what treatments to try and when. It allows me to see how other people are affected by any number of treatments. Furthermore, it allows me to share my own treatment stories to help others. Most notable are my stem cell treatment in Germany and the CCSVI procedure in California. I spent many hours talking to others on PLM about their experiences and tried to give as much of my own information as I could.

I love the forums and I check constantly about what is trending. It gives me new leads to follow in research and it allows me to connect with others who are fighting a similar battle.

Here at PatientsLikeMe, we always work to put the patient first. What’s one change you’d like to see in healthcare to make MS care more patient-centric?

I have been incredibly blessed with a successful business that has provided me good healthcare. That good insurance has allowed me to see good doctors at good hospitals when I have needed to. However, that being said, I have had to fight my way to get my needs met even with health insurance. I need all sorts of equipment to survive. My insurance has covered very little of it. Proper wheelchairs, scooters, leg stim device, ramps are just a few.

I had to fight to be part of the Christopher Reeves program at McGEE in Philadelphia because I had MS and was not a “stable spinal injury.” I had to fight to get onto Rituxan because it was approved for RA/Bcell leukemia, but not MS.

I have created a tremendous support network to get through these battles – many do not. There needs to be more advocates, more support for those who are fighting the battles of their lives. Penn just hired a MS social worker just for these sort of things.

Share this post on twitter and help spread the word for multiple sclerosis.


“I know that it will pass eventually” – PatientsLikeMe member Jennifer shares about her PTSD

Posted June 6th, 2014 by

June is National Posttraumatic Stress Disorder (PTSD) Awareness Month, and recently, Jennifer (aka sortaborderline) spoke about her personal experiences with the neurological condition. She talked all about learning to roll with her triggers, leaning on her family and PatientsLikeMe members for support, and recognizing the relationship between her fibromyalgia, myalgic encephalomyelitis (ME/Chronic Fatigue Syndrome) and PTSD. Check out her full interview below.

 

What went through your mind when you were first diagnosed with PTSD?

I already thought that PTSD was the problem, but it was such a relief to know that I wasn’t “losing my mind.” I have a legitimate disorder, not something that I can wish away or just “try harder” to ignore or push through. I actually felt empowered. Now I knew for sure what was going on, so I could work on treating it. Putting a name to the disorder really helped take a lot of the fear out of it for me. When I am triggered, I know why and I know that it will pass eventually. Just that little bit of information gives me so much more power over it as opposed to before when I didn’t know what was happening.

What have you learned about living with PTSD in the years following your diagnosis?

For the most part, I have learned to roll with it. Not that it is easy or that learning that hasn’t been difficult. I have learned that it is okay to share with my support system when I am triggered and ask for help getting myself back to center. I have learned that it is okay to share how I am feeling with my husband. That was a big step for me. Not because he hasn’t always been supportive of me, he has. Because of my particular issues, it is difficult for me to trust people with my unfiltered self. I’ve learned that I can with him, and it has helped strengthen my marriage immeasurably. People on the Mental Health board at PatientsLikeMe have been incredibly helpful and supportive of me and I know that no matter how bad it gets, I can pour it out on the page in my journal and be supported. For one thing, it can be cathartic to get it all out on the page. For another, it helps me to get feedback. Sometimes all it takes is someone reminding you of the coping skills I have to help me get my bearings.

In addition to PTSD, you’re also living with fibromyalgia and ME/CFS – do you notice a relationship between your conditions? How does one impact the other?

My diagnoses are essentially intertwined. One can trigger the other. If someone is having a long or particularly painful ME/CFS flare, that can make a neuro-typical person anxious. For a person with an anxiety disorder, that is amplified. The pain from the ME/CFS is exhausting. All of those pain signals bombard your brain for days on end, and your brain gets tired. It makes it difficult to think, resulting in the bane of the CFS/ME sufferers’ existence, the dreaded fibro-fog. It is very difficult and emotionally draining, not to mention the effect it has on your sleep. It is difficult to use learned coping skills when you’re exhausted.

On the flip side, anyone with an anxiety disorder can tell you that there are physical symptoms when you’re triggered. With ME/CFS, that is amplified as well and can trigger a flare. Which can amplify the anxiety trigger. It can be viciously cyclical. Sometimes, I just have to rest. There is nothing else to be done. Rest, a good diet, and hydration are the best thing to break it sometimes. If anything, I have learned to pay attention to subtle changes in my body or mood so that I can try to mitigate flares and triggers whenever I can.

You mention a “normal” mask on your PatientsLikeMe profile – can you share what means for you?

I am a mother of two children, I am a wife, a daughter, an aunt, and a granddaughter. I am trying to build a career and lead a full life. People depend on me. I have to “fake it until I make it” a lot of the time. It is difficult. It is nice to be able to take off that mask and be frank about what I am dealing with in the safety of the PatientsLikeMe Mental Health forum. I truly believe the help and camaraderie that I have found there has helped me to maintain a stability that I didn’t have before I found it. I feel much less alone in my struggle, even when in mid-episode, and as much as my “in person” support system is helpful, sometimes you just need to talk to someone who has been where you are. It is indispensable.

How have the connections you’ve made with others in the PatientsLikeMe community helped you to take that mask off?

I am not afraid of my symptoms anymore. I am not afraid to let my feelings out a bit more. I am not afraid to reach out and ask for help, nor am I afraid to offer help to others. Even a little note of support can help pull someone back on the path they want to be on. People on the forum have done it for me so many times. Having a cheering section helps you get the strength together to keep fighting. I know that, and I offer as much support as I can to other members because it matters. I feel like I matter. Even when my symptoms are at their worst and I feel weak and small, I know that a note of support to someone else matters. Sometimes when you can’t bring yourself to matter to yourself, mattering to others can keep you going until you can.

What advice would you give to someone who has just been diagnosed with PTSD?

Don’t be afraid. Don’t let negative stigma regarding mental illness keep you from getting help. Our disorders are just as valid as physical illnesses. They need treatment in order for us to function and live our lives. Therapy was absolutely essential to getting me stabilized. It truly helped me to manage my disorders and start living again. If you don’t “click” with the first therapist, try another. When you find the right fit and do some hard work, it will make a huge difference for you.

I have found the tracking tools on PatientsLikeMe to be immensely helpful, especially in the beginning, for tracking symptoms to see if there are patterns in my triggers and symptoms, which has helped direct my therapy and coping techniques. The medication tracker has been helpful as I am one of those super fortunate folks who seem to have a proclivity toward weird side effects from medications. That way I can remember what we have tried and how it worked. Visit the forum. Check out my journal if you want, it’s public. There are folks who have just hung out and read the forum for months before joining in, and that is okay. It helps to see that others think like you and understand what you’re dealing with.

Most importantly, don’t give up. It can get better.


Putting a face on PTSD

Posted June 4th, 2014 by

The National Center for PTSD has named June Post-traumatic Stress Disorder (PTSD) Awareness Month, and over the next few weeks, we’ll all be learning, connecting and sharing about it to better help everyone living with the neurological condition.

According to the National Institute of Mental Health, 7.7 million adults are living with PTSD in the U.S., and although it affects many military veterans, anyone can experience post-traumatic stress at any age.1 There is no known cure, but it’s usually treated through psychotherapy, medications or sometimes a combination of both.

So, who are some of the millions that are living with PTSD, and what are their stories? Here are just a few from AboutFace, a website produced by the National Center for PTSD that’s all about telling real stories of veterans living with the condition. Click on any of the images to hear what they have to say.

Mary C. “Katie” Weber
US Army (1993 – 1995)
PFC, Transportation Management Coordinator
Germany


When I knew I needed help-I was suffering in silence. I was allowing myself to become more and more depressed … so much so that my family became extremely concerned and suggested that I go to the VA.”

Bill Talbott
US Air Force (1967 – 1971)
Sgt, Morse Code Intercept Operator
Philippines, United States, Vietnam


How I knew I had PTSD– “I was constantly moving … always had bad dreams, hitting walls, putting holes in walls. I just couldn’t control myself.”

Tyler Jones
US Marine Corps (2002 – 2006)
CPL, Military Police
Iraq, United States


Why I didn’t ask for help right away– “I think there’s a stigma attached to it … for me, it’s feeling like I’m not a real marine.”

What can you do to help during PTSD Awareness Month?

And if you’ve been recently diagnosed with PTSD, you’re not alone. Join members like you today and connect with people who know what it’s like.

Share this post on twitter and help spread the word for National PTSD Awareness Month.


1 http://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/index.shtml#part6


Help make migraines visible in June

Posted June 3rd, 2014 by

Migraines aren’t just simple headaches – they are intense, debilitating head pains that can last for a very long time if left untreated. That is just one reason why June is National Migraine Awareness Month. This month, everyone is working to get the word out about what it’s really like to experience a migraine.

Denatured Tension – Lisa LaMotte

 

Over 37 million people in the U.S. have been diagnosed with migraine,1 and these people experience a wide variety of symptoms. About a third of patients can recognize when a migraine is coming by a unique “aura” they experience beforehand, commonly flashing lights, zig-zag lines or a temporary loss of vision. Besides the throbbing, intense head pain, migraines can also be accompanied by nausea, vomiting and sensitivity to light and sound.2  Although there is no complete cure for migraines, treatments exist that try to block the onset of a migraine or manage the symptoms afterwards.

 

 

Morning Heavy – Julia Knowlton

 

The American Headache Society’s Committee for Headache Education (ACHE) has a great series of artwork on their website that shows what living with migraine is like (we have just a few here in the post). You can see the rest of the gallery by clicking here.

 

 

 

Loneliness, Pain, Tears – Denise Auger

 

Be sure to wear purple in support of migraine awareness, and don’t forget to share about your activities on Facebook and Twitter. ACHE also has a PicBadge you can post as part of Migraine Awareness Month.

Finally, if you’ve been experiencing migraines, join the more than 5,000 PatientsLikeMe members who are living with the same condition. You can check out treatment evaluations and ask about anything in the forum – the community is always up for sharing.

 

 

 

Share this post on twitter and help spread the word for National Migraine Awareness Month.

 


1 http://www.headaches.org/content/migraine-and-headache-awareness-month

2 http://www.ninds.nih.gov/disorders/migraine/migraine.htm