8 posts tagged “veterans”

“I’m still fighting for a good cause, just on a different battlefield” — Member Shanon opens up for Veterans Day

Posted November 11th, 2016 by

PTS member Shanon (sgreer) is a veteran of the US Army, and this Veterans Day, we’re sharing his story to honor those who’ve served and spread more awareness and understanding for the millions who are living with chronic conditions.

Shanon is a police officer in Giddings, TX. When we caught up with him, he shared about his passion for video games, tattoos and spending time with his daughters. He also opened up about what it was like readjusting to civilian life after his time in the U.S. Army, and the coping tactics he uses beyond medication and therapy.

Get to know him better below and find out what he has to say about his new normal: “I love my job and can sleep at night knowing that I’m still fighting for a good cause, just on a different battle field.”

Tell us a little about yourself. What are your hobbies and interests?

My name is Shanon Greer and I am 35 years old. I was born in Phoenix, Arizona, and I have two older brothers and two younger sisters. I got married at 22 and decided to join the Army when I found out that my wife at the time was pregnant and I didn’t have good insurance. I always wanted to be a police officer but couldn’t afford to go to college for the required college credits needed to go to the police academy, so I joined the Army as Military Police in 2003. Shortly after I joined, my first daughter was born.

After serving in Korea for a year, moving to Texas because I was stationed at Fort Hood, going to Iraq twice (the first time for one year and the second time for 18 months), and serving honorably for 6 years on active duty, I requested to be discharged. I then started working for Montgomery County Sheriff’s Office in Texas in 2009 and worked there for five years while being in the Army Reserves. I started as a Detention Officer/Jailer while working on becoming a Deputy. In 2013, I became a Deputy and then in February of 2014 I got remarried. March of last year I moved up to Giddings, Texas, and became a police officer for the city, and then had another baby (my second daughter) in December.

I have many hobbies and interests. I grew up playing video games so I still do. I have been playing them since I was about 10 years old. I love sports, mostly baseball, football and basketball but I always enjoy a good game regardless of the sport. I love music, I have since I was a child. Pretty much all kinds of music, too. I love movies, mostly comedy, horror and thrillers, but I’ll watch pretty much anything. My favorite TV shows are The Walking Dead and Ghost Adventures. When I was growing up, I loved putting together model cars. I love drawing and am pretty decent as I’m told all the time. I love history, so I love going to museums and historical landmarks. I love exercising and weight lifting, although I haven’t really done either in a little while. I love detailing my vehicles and making them look nice. I love spending time with family and friends, especially my daughters. I love getting tattoos, all mine have meaning behind them. My first tattoo I didn’t get until I was 30 years old when my mom passed away in remembrance of her. I love guns also and whenever I’m not getting tattoos, I’m usually getting a new gun or going to the gun range. I love to drive and go on road trips, sometimes with nowhere in particular but just to drive. I’m very patriotic and am proud of what I have done and am still doing. I love my job and can sleep at night knowing that I’m still fighting for a good cause, just on a different battlefield.

After serving in the Army, what was it like adjusting to everyday life again?

When I first left the Active Duty Army I had a hard time adjusting to civilian life. I couldn’t find a job right away and my girlfriend at the time had just broken up with me, so I had to find my own place to live and it was hard to do with no job. I applied to about 10 or 12 different law enforcement agencies and was only contacted by three. It took about six months to be hired. During the time I was waiting, I finally was hired by an apartment complex to clean the property and complete miscellaneous tedious tasks. I wasn’t getting paid much to work there so my paychecks didn’t even cover all my bills. Luckily, in my second and last deployment I managed to save up about $17,000, so that assisted in paying my bills until I was hired by Montgomery County Sheriff’s Office.

Some people with PTS talk about having difficulty seeking out a diagnosis and treatment. What was your experience like?

I was diagnosed with PTSD after my first deployment in November 2006, and because I was afraid of being kicked out of the military I told them that I wasn’t having any issues with it. In reality, in June of 2006 when my truck was blown up by an IED, that’s when I started having PTSD issues. There were many days where I didn’t sleep because every time I did, I would have nightmares of the incident that came really close to killing my friend and teammate. Then in July, my best friend was killed in Iraq (we served together in the same unit), my grandad passed away the same day and I learned I was going through a divorce by coming home for my R&R leave to an empty house. All this really triggered my PTSD and I contemplated suicide at that point. What stopped me was knowing my daughter needed me, so finally, I went to a counselor to talk about what was going on.

Once I left the military, I went to the VA and was prescribed multiple medications for my issues, I think I was given six total. Being put on meds really affected me and I called my mom asking her if she was proud of me since I wasn’t the same person she knew anymore. I only took the meds for a short time because I didn’t like the way they made me feel and I have learned what my triggers are and attempt to avoid situations that will cause me to have an episode (that’s what I call my outbursts). I felt like no one was there for me and I was struggling by myself. This is another reason why I believe my girlfriend at the time broke up with me because she didn’t understand what was going on with me and she didn’t want to deal with it.

When I met the woman who is now my wife, I informed her right away about my background and issues and what happens when I have an episode. She educated herself on PTSD and has been a tremendous help with it all. She gives me space when I need it and helps to stop an episode before it starts and if it has already begun, she knows how to bring me back to reality. She has even witnessed one time when I took a nap that apparently I was having a nightmare but couldn’t remember when she cautiously woke me up. She informed me that I was crying and violently shaking in my sleep but I have no recollection of what I was dreaming about or even all that she told me.

 You’ve mentioned having to change medications a few times. Have you settled on a particular treatment, therapy or mix of both? What’s worked best at helping you manage your symptoms?

Medication and therapy are good, but they’re temporary solutions to huge problems. I feel it’s like putting a Band-Aid on a cut that requires stitches. Don’t get me wrong, when my issues get really bad I will use the meds and therapy also but I have found that the best solution for me is talking to non-judgmental people like my wife and other veterans who will just listen and not criticize. Knowing what your triggers are is the biggest thing that will help so that you know when you’re about to have an episode and what you can do to avoid those situations. Find hobbies that you love to take your mind off of whatever it is that may be bothering you. Every time I’m about to have an episode, I turn on music or play a game to distract me until it passes.

 Do you think there is stigma surrounding PTS?

There is definitely a stigma surrounding PTSD. Everyone acts like it’s the plague and that’s one of the reasons why I was afraid to say anything when I was still in the Army. Even today there are few people I discuss it with and let them know I have PTSD because I don’t want anything to be a threat to my career. I’ve been with my department for almost two years now and I just started telling certain co-workers whom I trust. But when I worked for the Sheriff’s Office for those five years, I didn’t tell anyone because I knew down there it would have been used against me.

 What has your experience on PatientsLikeMe been like so far?

I believe that I have had a pretty positive experience on PatientsLikeMe so far. I try to help encourage others and provide them with information they may not know. I also feel that connecting with other people with similar issues helps me to manage mine as well. I like to help others and if all it takes is some encouraging words from a stranger to prevent that person from committing suicide, then I’ve done my job. I also like the fact that when I’m having a bad day and I express it, someone else always has encouraging words that tend to bring my spirits up some. I feel that’s what it’s all about, to help each other and lift each other up. I know I always feel better when I see someone is having a tough time and I provide them with encouraging words or just make small talk and allow them to vent.

 

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Your data doing good: The POEM Study

Posted December 4th, 2015 by

When you share your health data, we all learn

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you.

PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true?

Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe back in 2010.  At the time, they were thinking about patient services that you might not expect a pharmaceutical company to focus on, things like information, advocacy, and education. In 2011, we worked together on a pilot study with people living with epilepsy. We learned that people who joined PatientsLikeMe felt that they better understood their own seizures. They even reported improved adherence to their medications. The results also underscored a significant piece of understanding about this particular population; prior to joining the site, one out of three epilepsy patients had never met another person living with this condition.

As the community grew, so did our understanding of what matters to these patients. Then in 2013, we found another partner who wanted to help create a new study focused on an even more specific group: veterans living with epilepsy, an often isolated and stigmatized part of the community. The question we were trying to answer was this: could a network like PatientsLikeMe, with its epilepsy-specific tools and resources, help those who found out about the site from their doctors improve their ability and confidence to manage their condition?

Along with UCB we collaborated with the VA Epilepsy Centers of Excellence in a six-week study of veterans using PatientsLikeMe. The evidence showed that by sharing their health data and connecting with each other online, these patients’ outcomes improved. The nearly 100 veterans who took part in the study grew more confident that they could take care of themselves, and did a better job of managing their care. The results were published this year in Neurology, a leading scientific journal in the field.

It all started with one partner, one community and a whole lot of data sharing. And now, five years later, there are nearly 10,000 epilepsy patients using PatientsLikeMe and helping one another to live better every day. You are the secret ingredient to helping others better manage their health. Thank goodness it’s not a secret anymore.

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Joining the effort to find answers from brain diseases and injuries

Posted November 11th, 2015 by

In honor of Veterans Day, we wanted to share two stories from our partner, One Mind.

First, the story of retired Colonel Gregory Gadson, who was wounded during his military service and was living with post-traumatic stress (PTS). PTS affects more than 7.7 million Americans each year.

The second video shares the story of Roxana Delgado, Ph.D. Roxana’s husband Victor was hit by an IUD during military service. She has lived the emotional toll of being his caregiver.  

If you’re a veteran, you can connect with more than 9,300 others in the PatientsLikeMe Veterans forum. Together, we can join the effort to find answers to brain diseases and injuries.

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“I’m happy to say that I’ve made tremendous progress” – An interview with PTS and TBI member Trevor

Posted October 14th, 2015 by

Trevor Martin, a Veteran of the United States Army was deployed to Afghanistan twice from 2009 to 2012 and was later diagnosed with both a mild TBI and PTS. He joined PatientsLikeMe to connect with others living from these conditions. Our friends over at PatientsLikeMe sat down with Trevor to learn more about his life with PTS and TBI. Here’s what we learned….

Some people talk about PTSD ‘triggers.’  Do you know your triggers, or do symptoms happen unexpectedly?

I know some of my triggers, like trash on the side of the road. In Afghanistan they would put IEDs under piles of trash to hide them on the side of the road. So I know if I see that today, my heart starts to race, I get hyper-vigilant, and I start to think something’s about to happen that I need to avoid.

You mentioned that you feel a lot of pressure to be who you were before the war.  How are you different since returning home? 

I used to be the fun guy. All my friends would come to me and we’d go out and go shooting and joke around. It’s hard now because a lot of my friends don’t really understand. They don’t really know what I’ve gone through and what I’ve seen because it’s hard to talk about. The friends that I have told don’t really believe it.

What has it been like connecting with other vets on PatientsLikeMe?  

There are things you’ve done or seen that you will never forget. I don’t want anyone to ever imagine the things I see when I close my eyes at night. I wouldn’t wish that on anyone. It takes a lot for me to come out and talk about it. It’s been easier to connect with people online instead of in person. If I hadn’t found the site, I honestly don’t think I’d be here right now.

I haven’t been on this site for very long but man, I’m glad I found it. Since telling my story in a forum called “PTSD, my story and a cry for help” a couple months ago and reading all of your stories, I’m happy to say that I’ve made tremendous progress within myself. I’ve only had maybe 5 “freak outs” since joining. Whereas I was having 5 a day before. Half of the battle is knowing that you’re not alone in this, we’ve all done and seen different things but in reality, we’re all the same.

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Give veterans access to the care they need

Posted March 11th, 2015 by

By Peter Chiarelli, retired U.S. Army general & CEO of our partner One Mind

As originally seen in the Washington Post

Soldiers listen as U.S. Secretary of Defense Ash Carter (not pictured) holds a question-and-answer session with U.S.military personnel at Kandahar Airfield in Kandahar February 22, 2015. (Jonathan Ernst/Reuters)

 

The high-grossing film “American Sniper” was nominated for an Academy Award for best picture, but it deserves higher honors for highlighting one of the greatest causes of casualties in our recent wars: post-traumatic stress (PTS).

The story of Iraq war veteran Chris Kyle, who was killed by a Marine veteran suffering from the effects of PTS and other mental-health problems, makes a powerful case that PTS needs to be a higher national priority. (You’ll note that I don’t include the word “disorder” at the end of PTS; the longer PTSD label actually discourages some service members from seeking treatment.) Since “American Sniper” debuted, Veterans Affairs and Defense Department leaders have been highlighting their programs for helping veterans diagnosed with PTS. But are those programs working?

In too many cases, the answer is no. Our PTS diagnostics remain crude, and no drugs have been approved specifically for treating the condition. Complicating matters, because of genetic and other differences among individuals, patients react differently to varying drugs and dosages. Finding the right mix can be a frustrating saga of trial and error. The wrong drug or dose can, if not caught in time, become a factor in other serious mental-health and behavioral issues, even including suicide.

It only makes sense that once Defense Department doctors identify an effective treatment for a service member, that same treatment should be available when the service member leaves active duty and moves to VA for care. More often than not, however, it is not.

The disconnect occurs because Defense has an all-inclusive drug formulary that allows clinicians to prescribe almost any medication approved by the Food and Drug Administration, while VA has a very limited formulary, primarily to control costs. Medically discharged service members who are given a 90-day supply of PTS prescriptions eventually must report to their VA medical facility for refills, where they are often denied — not for medical reasons but because the medications they rely on are not on VA’s approved list.

This is not a case of one prescriber issuing Bayer aspirin while another uses Saint Joseph. Service members whose symptoms are being controlled by specific anti-depressant, anti-anxiety or anti-psychotic drugs, as well as pain and sleep medications, are forced to give them up and search for a replacement — often a painful and dangerous process — simply because Congress has failed to require Defense and VA to harmonize their drug formularies.

Let me be clear: The problem is not that doctors within the two systems disagree over which drugs should be part of their formularies. Their hands are tied. They must operate within the rules set out by Congress.

Rather than repeating the laborious process of finding another drug that works, many veterans have told me they sought out private providers to fill their prescriptions, usually paying for their medications out of pocket. Imagine how they feel about VA when their first experience with the agency is a doctor telling them they cannot fill a prescription that has relieved their PTS symptoms for months or even years. In some cases, the veteran is not even given enough of the recommended drug to safely discontinue its use.

I have testified about this serious discrepancy, most recently as a member on the Military Compensation and Retirement Modernization Commission, and have discussed it privately with members of Congress. A few have said they will try to address the problem, but most have declined, citing the added cost to VA of a fuller formulary and the time the Government Accountability Office would require to determine the budgetary impact of such a change. Shouldn’t the long-term cost, danger and social impact of denying vital medications to veterans provide a sufficiently compelling reason for Congress to act?

The obvious solution is to include the same medications in both formularies. If this is not possible, Defense Department doctors should exhaust all the options available on VA formulary first before considering any drugs not covered by VA. If neither of these options can be adopted, Defense doctors should at least warn service members that their current prescriptions will be unavailable in the VA system.

This problem needs to be fixed immediately. A directive released by VA in late January seeking to address the problem without correcting the misaligned formularies contains too many loopholes and is totally inadequate. We need a solution, and not a patch. Chris Kyle’s death underlines the urgency of providing effective treatments for PTS. We can start by getting the Defense and Veterans Affairs departments on the same page.

Learn more about One Mind.

Read what the PatientsLikeMe community is saying about Peter Chiarelli’s article.


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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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.

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New Efforts Underway to Improve Care for Veterans

Posted January 22nd, 2013 by

With financial support from UCB, the Department of Veterans Affairs and PatientsLikeMe will study patient-reported outcomes.

Today, the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE), biopharmaceutical company UCB and health data-sharing website PatientsLikeMe announce a new study to better understand what factors improve health outcomes for veterans with epilepsy.  The ECoE has recently completed a pilot study focused on collecting and sharing real world, patient-reported data on seizure frequency and severity, treatment adherence, patient and physician dialogue and overall quality of life. The study is now open and available to all veterans living with epilepsy at www.poemstudy.org.

“This collaborative effort, with partners from government and private industry, provides an exciting opportunity to improve the outcomes of the thousands of veterans with epilepsy. Our work together may also deliver insights into how we can improve the care for anyone with epilepsy,” says study lead and ECoE’s John Hixson , M.D.

As part of their initial partnership to help epilepsy patients, which began in 2010, PatientsLikeMe and UCB conducted a study of members of the PatientsLikeMe epilepsy community that showed that people with epilepsy who joined PatientsLikeMe better understood their own seizures and improved adherence to their medications.1,2 The new study of veterans will integrate validated clinical outcome measures alongside the patient-reported benefits of the online PatientsLikeMe community. The community platform allows patients to update their physician on aspects of their epilepsy, such as changes in symptoms and medication side effects, and enables physicians to view this patient data prior to clinic visits. The goal is to provide a complementary support system that enhances clinic visits and improves patient outcomes.

UCB, a leader in epilepsy, is providing the funding for the study. “We are committed to improving the standard of care for people living with epilepsy. We believe that this collaboration will address some of the unique challenges faced by veterans impacted by epilepsy and will be a model for other providers of care,” says Patty Fritz , Vice President, Corporate Affairs and Operations at UCB.

According to the ECoE, approximately 5.6 million veterans visit VA Medical Centers each year, and approximately 66,000 of these veterans are diagnosed with seizures or epilepsy. Epilepsy is a chronic neurological disorder defined as two or more unprovoked seizures.3

Adds Jamie Heywood , co-founder and chairman of PatientsLikeMe, “This is a great opportunity to validate our earlier findings, which revealed that epilepsy patients using our website reduced side effects, increased compliance and reduced ER visits. Our partnership further demonstrates how committed UCB and the VA are to advancing innovation in health care. Collaborations like this will build the foundation for a patient-centric future in medicine.”

References
1. Wicks, P., Keininger, D. L., Massagli, M. P., de la Loge, C., Brownstein, C., Isojarvi, J., & Heywood, J. (2011). Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy & Behavior.
2. De la Loge, C., Massagli, M., Wicks, P. PatientsLikeMe®, a data-sharing online community: benefits for patients with epilepsy. Presented at the 63rd Annual Meeting of the American Academy of Neurology (April 9-16 2011), Honolulu, USA.
3. Epilepsy Foundation. About Epilepsy. http://www.epilepsyfoundation.org/aboutepilepsy/. Accessed 9/13/12

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

About ECoE
The VA has funded the Epilepsy Centers of Excellence (http://www.epilepsy.va.gov/). The Centers of Excellence are charged with: (1) establishing a national system of care to all veterans with epilepsy, (2) educating veterans and others in their lives impacted by epilepsy about high quality epilepsy care, (3) providing health professional education and training in order to deliver the highest quality of standard of care to veterans with epilepsy, (4) utilizing national VA and other databases in order to inform providers and policy makers in Central Office about health care delivery and health policy decisions, (5) conducting state-of-the-art research about epilepsy, and (6) implementing an informatics backbone to meet the above objectives.

About UCB
UCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With more than 8,500 people in about 40 countries, the company generated revenue of EUR 3.2 billion in 2011. UCB is listed on Euronext Brussels (symbol: UCB).