14 posts tagged “PTS”

Treating PTS: What members said in a recent study

Posted June 27th, 2016 by

June is National PTSD Awareness Month, so we’re shedding some light on what it’s really like to live with post-traumatic stress (PTS). At the end of last year, we teamed up with our partners at One Mind to better understand what it’s like for PTS patients to treat their condition. Nearly 700 members of PatientsLikeMe’s PTS community took a survey, and now that we’ve analyzed the results, we wanted to share what we’ve discovered.

Check out this infographic to see what members said about why they did or didn’t seek treatment, who helped them find it, and whether or not it helped.

 

 

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“I am working on all of it slowly” — Member David opens up about his experience with PTS

Posted April 13th, 2016 by

Meet member David (david61060), a United States Air Force veteran who’s living with multiple conditions including PTS, sleep apnea, and epilepsy. When we caught up with him, David shared what it was like to grow up as a “navy brat,” his experience in the military, and how It took him more than nine years to admit to himself that he had PTS.

Below, see what he has to say about triggers, coping with more than one condition, and the value of connecting with others on PatientsLikeMe.

Tell us a little about yourself.

To tell you about myself … well I was a navy brat and grew up mostly around just military kids and people connected with the military, every 3 to 4 years moving to a new base. Except in the 70s we stayed in the Republic of Panama for 6 years, leaving there in 1976. I was 16 — that was the hardest move. First year of high school … leaving behind a lot of friends that I knew I would never see again. Moving to California and graduating high school, I went into the Air Force. In my 15 years I saw a lot and did a lot but my last tour was the worst: Desert Shield and Desert Storm.

I came home with so many problems – depression, seizures, nightmares, waking up in a different room than where I went to sleep … then the divorce and losing the house. The car we had broke down and I had to walk or take the bus to the base (fortunately we did not live far from the base).

Most of the military doctors at Kelly Air Force Base did not seem very sympathetic to my problems including weight gain because of the drugs … blackouts at work THEN the notification that I was being discharged because of my weight gain. The next thing I knew I was in a true padded cell with the bed bolted to the floor.

If not for my older brother (a fighter pilot in the USAF) and my father (a retired USN Officer) stepping in and having multiple conferences, I would have been discharged with out a hope of help from the VA or the US government.

You wrote in a forum post, “Some people … did not want to even hear or listen to me.” How did you find the courage to open up about your PTS?

Opening up about my disorders — PTS and my seizures — I was originally very quiet about my problems. I do not even know if my parents who I lived with even knew. An assistant at the VA in Martinez, CA recommended that I go to a meeting at the mental health unit, and I did. I met one of the best doctors I have known, Dr. Kotun.  She recommended that I go into one-on-one therapy, so I did.

It took me more than nine years to admit to not only myself but to my therapist that I was suffering from PTS.

In your profile, you list epilepsy, depression, and sleep apnea as some of the other conditions you live with. How has it been managing these in addition to PTS?

Managing and just attempting to live with them are not really that different. Being sure that I take my pills three times a day is a real trial for me. In the morning there are 12 pills (including vitamins and other OTC pills). Getting my sleep is and can be the hardest part. Sometimes the nightmares and the sweats can be the hardest part of the day. Putting the mask on for the sleep apnea at times seems like putting on that gas mask … just dozing off and I hear a car horn that sounds like the warning siren. The mask suddenly feels constricting … I end up awake for hours afraid to have to put it back on. Usually I do not until the next night.

As I said before I think living with all I have can be really trying for me and my new wife but I have to go on — I have to — the other choice is not an option.

Some people have shared their PTS “triggers.” Do you know your triggers, or do symptoms happen unexpectedly?

My triggers for my PTS seem to happen when anything military is close— the helicopters flying overhead. Hearing munitions going off, and sometimes it could just be a memory that that was triggered — walking in a park and we come to a fence line and the area suddenly looks like the area close to one of the bases I was at, then a car backfires and I drop to the ground and reach for my weapon. In the long run it can be embarrassing to react like that in public. This had stopped me from even going out the park or into the city but I am working on all of it slowly.

And then there are times that I just have that feeling for no reason and the fear comes over me again like a wave. It makes no sense.

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

Connecting with others and talking to others about my problems and seeing theirs has been a remarkable window to work with … to realize that if we all open up we could help each other. Being that there are others on the site that are not veterans but have a lot of the same problems has been very helpful to me, and I hope to others that I have written to as well.

 

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“It is definitely a daily challenge” – An interview with PTS member Holden

Posted January 11th, 2016 by

Holden Montgomery (holdenmonty), an administration support technician for the Air Force Space Command, was deployed to Afghanistan in 2010 and later diagnosed with PTS, depression, and anxiety. He joined PatientslikeMe in March 2015, where he’s been connecting with other vets and sharing how he copes with his conditions.

We recently caught up with Holden, and here’s what he had to say…

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

So I must admit that when I started with this journey after my deployment and home break-in/vandalism I didn’t really have any hobbies or passions. Since my only focus while I was deployed was to live until the next day, that is the mindset that I came back with and still struggle with, but I will touch on that later.

So the biggest thing that saved me when I was struggling the first several months before my first son was born was photography. I have a Nikon D5100 DSLR and I would go exploring in nature and take photos of whatever I thought looked awesome or beautiful. I have thought about doing that again here in Colorado Springs but when you wake up to Pikes Peak every day and it’s always there you tend to take the beauty that is around you for granted. I must admit though just about every sunrise and sunset is breathtakingly beautiful.

But lately, after I attended my first Soldier Ride with the Wounded Warrior Project towards the end of June of 2015, I really got into bicycling and that has become my main hobby and passion. It’s also kind of amazing how you change because I have started to notice that one of my passions is wellness. I know I need to work on my own personal wellness but I have started to be more passionate about wellness in general.

In your profile, you mention dealing with anxiety and depression in addition to PTS. What are the challenges of managing three conditions?

So even though I was initially diagnosed with PTS in 2011 and anxiety in 2014 it wasn’t until I spent a week at a behavioral health clinic in the middle of June of 2015 that I was diagnosed with all three. But being diagnosed with all three gave me some peace of mind. Well as much as you can with mental health conditions.

For me it seems like the cause of my PTS was several things that combined together. Between multiple different things from my deployment and then a couple months after I got back my home I was living in at the time was broken into twice in the same week. It seems to be very similar with PTS from what I have seen that people that have PTS tend to have anxiety and/or depression as well. It seems like what led to my diagnoses of PTS was kind of a snowball effect of different things, and it seems like PTS tends to be a combination of different conditions. For me it’s anxiety, and depression. That is what people tend to see of my PTS. My therapist that I have here in Colorado Springs told me that she sees me as having anxiety with no other symptoms which was rather aggravating because I knew there was other stuff. It is definitely a daily challenge.

I heard an analogy one time and I really liked it and I hope it doesn’t offend somebody but if it does I’m sorry but it has helped me with my PTS and stuff. PTS is like cancer, you treat it and work to get ride of it and once it is gone there is a lot of relief and you try to move on with your life the best that you can but in all actuality it seems like there is no 100% cure and that it is always in remission. There can be any number of different things that can happen and it comes back. Sometimes it comes back but is very minor and is easily managed and sometimes it seems like it comes back with a vengeance and tries to kill you.

What has your experience been like tracking your moods, quality of life, and PTS symptoms on PatientsLikeMe?

I have really enjoyed tracking my mood and quality of life when I make sure to update it regularly. It may sound kind of weird but when I put how I’m feeling that day or in the moment with a small description of what is going on then somehow I’m not able to lie, or make it sound not as bad. I’m blunt and sometimes brutally honest. Which is really nice and refreshing since I tend to lie to myself about how I’m feeling.

I know there is a way that you can print out how you have been doing to bring to your therapist but I haven’t actually done that yet. I guess I am still trying to tell myself and the world that everything is ok and that there is nothing going on with me until I can’t stuff my emotions anymore and I explode. I guess I’m still afraid of that stereotype that society has drilled into me that if you have mental health issues then you can’t be trusted around “normal” people.

 You mentioned journaling as a way of handling your anxiety. Do you have any other coping strategies for people with PTS, depression, or anxiety?

I really enjoy journaling. It’s kind of like another way of the whole mood tracking and quality of life tracking. I can’t really lie when I’m writing it down.

I did run into a little bit of a big question. I filled up one small notebook that I used. It’s small enough that it can fit in my back pocket so I keep it always with me. But then there is the thought about what if somebody gets a hold of it and uses what I wrote against me or reads it, what would I do? So I thought about burning it or shredding it so nobody would ever be able to read it. I talked about it with my therapist and I wrote a small disclaimer in the front cover that basically states whatever is in here was how I felt at the time and I have addressed how I was feeling have resolved it to the best of my ability.

But anyway bicycling has been my biggest go-to besides journaling. I have created a coping card that is small enough to fit in my pocket which would help if I actually kept it on me and looked at it constantly. But some of the things on it are talking with trusted individuals which unfortunately seems to be growing smaller and smaller. But anyway walking, deep breathing/quiet time, looking up inspiring quotes, reading my Bible, listening to music, taking pictures of nature, take a shower, use my stress ball, and getting to my safe place, and thinking, which might seem weird but tends to be in a tree. I don’t climb the tree but I find a pine tree that is full enough that if I walk far enough into it nobody will be able to tell that I’m there. I guess you could say hiding from the world and thinking.

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

I have really enjoyed connecting with other vets on PatientsLikeMe. But I must admit more importantly than connecting with other vets is connecting with other individuals with PTS/anxiety/depression because even though everybody has their own story, you can end up in a darker place if you start comparing stories.

For instance when I was deployed I wasn’t allowed off base because I was an IT guy and kept the network for my squadron running and computers running. But with an accumulation of events while deployed and after my deployment I have been diagnosed with PTS but one of my best friends that I met here through the Wounded Warrior Project has a spinal cord injury, traumatic brain injury, and PTS from being blown up when he was out on a convoy in Afghanistan. He is worse off than me and I used to tell myself that he is the kind of person that deserves the help that I receive because he has seen and been through some much worse stuff than I have.

I don’t have a spinal cord injury, or a traumatic brain injury. But we help each other, I share with him some thoughts that I have that I must admit I tend to be ashamed of because they aren’t the kind of thoughts that I would normally have had before everything and more times than not depending on the situation he has had the same thoughts or if he was in my situation would have the same thought, and we challenge it together. Just sharing how you feel with another individual that might be feeling the same way or something similar no matter how different your stories are is a really powerful thing. So really the biggest thing is just the fact that you are connecting with somebody that has a similar diagnosis. Really, diagnosis doesn’t even really matter— just somebody feeling similar to you. Somebody that you can relate with.

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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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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

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 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


“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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Tackling brain illness, together

Posted September 4th, 2015 by

Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement:

Our brains need answers.

And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a friend or family member, need? It’s not just about researching better treatments or improving the diagnostic process for conditions like PTS and TBI. Rather, it’s about everybody coming together to share their own experiences with brain injury to help raise awareness and increase general knowledge about brain health. Tankmartin, a PTS member of PatientsLikeMe, is the centerpiece of the campaign. Read what he had to say:

If you’d like to participate in the #BrainsNeedAnswers campaign, visit One Mind’s website to learn more about how you can make a difference. And if you’re living with PTS, TBI or another mental health condition, reach out to others like you in the PatientsLikeMe community and find the answers to your own brain questions.

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“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS

Posted August 21st, 2015 by

JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members. 

Can you give us a little background about your experience in the military?

In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives.

It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the time leading up to the need for “the surge.” As we drove the highways of the Anbar, we were shot at, mortared, and bombed. Intelligence even found “wanted” posters of one of our vehicles (we named it Chuck Norris).

When were you diagnosed with PTS?

I wasn’t diagnosed with PTS until many years after the war (I tried to “fix” myself), but the traumatic events are actually multiple, including receiving indirect fire on what was supposed to be my last mission – just a week or so after two good friends were evacuated after being maimed for life.

What have you done to manage your symptoms of PTS?

At the beginning, I refused medicines – I thought I was strong enough to beat it on my own. I worked with a VA counselor before moving for a semester. While there, I worked with a university student/counselor, but nothing was really helping. Finally, I went to my Primary Care Physician and told her that I needed more. The VA psychiatrist tested some medicines, but one needed to be changed (this is normal). Finally, the combination of medicine and individual therapy created within me a sense of “I might make it.”

You joined PatientsLikeMe in June 2015.  As a newer member, what do you think of the veteran’s and PTS communities?

I joined this community because although I feel better than before, I still need the help of others. I can see that there actually is help here.

You’ve mentioned in the forum that your triggers seem to be non-combat related – can you describe your triggers?

In one of the forums I mentioned my triggers. These, to me, are odd. Bridges, garbage on the side of the road, and even a midnight stroll have triggered panic attacks or anxiety. Often, simply being in a grocery store too long causes anxiety to the point that I take a quarter of Ativan, squeeze my fists or the cart, and head to the door or checkout (whether finished or not). While this has caused an impairment in life, it has never been “the end” of life. These are objects on my road to a healthy living – objectives to be conquered.

Although there is a prevalent idea in the Armed Forces that a man/woman should never ask for help or ever see a physician, I have found that to be a rather juvenile view on life. The greatest thing a veteran facing PTS or anxiety can do is not try to face it alone. We are a community, a brotherhood, and only together with a good doctor can we ever hope to survive.

What advice do you have for other military members who may be experiencing PTS and related conditions?

Twenty-three of our brothers and sisters quit every day. I refuse to be a part of that statistic.

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Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS

Posted June 22nd, 2015 by

Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe has helped her to look for a person’s character, not their diagnosis. Read about her journey below.

Hi Ashleigh! Tell us a little about yourself and your husband.
Hi! I am 29 and my husband Phil is 33. We have been married for 9 and a half years, and we have a son who is almost two 🙂 . I was diagnosed with Relapsing Remitting MS in July 2009 just before my 24th birthday. My husband served in the Army Reserves for just over six years and did one tour in Afghanistan in 2002. I met him while he was going through his Med Board and discharge. We met while working at Best Buy – he was Loss Prevention, the ones in the yellow shirts up front – and I was a cashier and bought him a coke on his first day 🙂 . We dated for nine months, were engaged for six, and got married and haven’t looked back!

What was your husband’s PTS diagnosis experience like?
It has been hard as his wife to see him struggle with first acknowledging that he had stronger reactions to small things in life than most people would and that perhaps he should seek outside help and then the struggle to get the care he needs from the VA. He is finally seeing a counselor next week after requesting he be evaluated for PTS a year ago. He has never had insurance other than the VA so has to rely on their lengthy processes for treatment. He was given a preliminary evaluation in March for the claim and was told that he definitely needed to be seen further, but then the VA made no follow up.

One of his manifestations is getting very frustrated very quickly, so I try to make all of his doctor appointments for him so he doesn’t have to deal with the wait times and rudeness from the VA employees. I have spent hours on the phone getting the right forms filled out and referrals done. I am proud of him for not giving up on it and seeing that he needs to learn some situational coping strategies so that we can enjoy life as a family. Phil loves camping and the outdoors where things are peaceful and open, so we belong to a private camping club and he loves to take our son and dog up there to get away.

You have a unique perspective as both an MS patient and a caregiver for your husband. Can you speak about your role as a caregiver and some of the challenges you face?
The biggest challenge I face is remembering his reactions to crowds and loud stimulating environments when we are choosing where to go. We have had to leave restaurants because they have been so busy and crowded just waiting for a table that he gets very panicked and apprehensive about being able to get to an exit quickly. He does just fine most places, but crowds and small areas stress him out. I handle making all of my appointments for my MS and his for his medical needs so it can be stressful sometimes while trying to work full time and be a mom.

How has PatientsLikeMe helped you expand your role as a caregiver?
I am just exploring the Post-Traumatic Stress section to see what others are experiencing. I never even thought about getting support for being a caregiver for Phil, I just always assumed he was the only one with caregiving responsibilities for me, but I see that I need to learn what I can about what he is going through so that I can give back the support he has given me over the years and through my diagnosis. Just as I want to be open about my MS, but don’t want it to define me as a person, Phil wants to learn to address his experience in Afghanistan and how he reacts to situations outside his control, but doesn’t want to be defined by a label of PTS. PatientsLikeMe has helped me to look for a person’s character, not their diagnosis. I have met many wonderful people and it is a great relief to know I can log on and vent or seek guidance from people all over the world.

What has been the most helpful part of the PatientsLikeMe site with regards to your MS?
Well I found the best neurologist ever through the site by looking up people who were on Low-Dose Naltrexone for their MS (which is an off-label prescription my former neurologist thought was not worth pursuing), then I sorted by those geographically closest to me, and I sent them a private message as to who prescribed them LDN. One of the members gave me Dr. English’s name at the MS Center of Atlanta, and that center has been a godsend for the care and advancements I have been exposed to. In a similar circumstance, I have made a new friend when a lady two years older than me found me under a search for those in her area and through messaging we found out that her son and mine were born on the same day, just one year apart! She lives 10 minutes away and Phil and I have become friends with her and her husband and that has been so great to have a female friend my age, with MS, and with a young child. Beyond the connections, being able to search for a medication and seeing how it is working for others and their reviews has been immensely helpful.

What’s one piece of advice you have for other caregivers who are also managing their own chronic conditions?
Just because there might not be a cure doesn’t mean you can’t learn a lot about life and yourself in the journey for caring for someone you love. Learn to take the good days with the bad and be thankful for life and being around to give support. In my case, I care for my spouse whom I love with all my heart and will be with for the rest of our lives. You have to view the big picture when you get caught up in the stress of day-to-day or certain circumstances, it’s the only perspective you can take when you’re in it for the long haul 🙂 . Also, don’t feel guilty when you need to take a break for yourself, you are only good for others when you have charged yourself up.

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Finding others with PTSD

Posted December 5th, 2014 by

Sometimes it’s nice not having to explain yourself to people who don’t really understand what it’s like for you, and to surround yourself with people who just get it. As the PatientsLikeMe post traumatic stress disorder community grows, we’ve heard from our members who are veterans about how important it is for them to connect to other vets.

Here’s a conversation with our Product Manager and former Marine, Sean Horgan and community member, David Jurado (Jrock121). They shared about their struggles returning home after war, and how they missed their rooftop cigar time with the boys.

David shared some personal details about his journey living with PTSD: after self medicating with Jack Daniels and oxycontin, David found help and peace of mind, connecting with other Veterans, communing with mother nature, and stepping up as a role model for others. He now teaches people you can “replace bad memories with good memories” by working through your bucket list.

The beginning of his transformation started with this cute pup, Willett. Named after a service buddy who died in combat, Willett helped David get out of the house and re-engage with society. David is now Executive Director of Companions for Heroes, a company that places shelter dogs with vets living with PTSD.

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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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“This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD

Posted August 18th, 2014 by

Talking about past trauma isn’t easy – so we want to say thank you to Jess right off the bat. She’s a PatientsLikeMe member who suffered a TBI, and she recently talked with us about her experiences. Jess walked us through her accident and her diagnosis and went on to explain that even though you may not see visible symptoms, a person can still be suffering on the inside.

Will you tell us about your story and what happened?

On January 11, 2012, when my husband Tim, my daughter Amanda and I left home around 5:45 PM to pick up my friend’s children for church, we had no idea how much our lives would forever be changed. Statistics show most accidents are within 2 miles of your home, but I wonder what statistics are for accidents caused by your neighbor’s teenage daughter.

I was driving and waiting to turn into the development where my friend lives, and as I looked in my rearview mirror, I noticed headlights coming closer and getting brighter. I started yelling to my husband that the car behind us isn’t slowing down. I tried to hit the gas, BANG…I remember seeing the Ford emblem on my steering wheel, then next thing I knew…I was screaming for my daughter and husband. Then my husband jumped out of the car screaming at the other driver. All the while I’m stuck in the car and nobody realized how bad my injuries really were. My husband comes back to our car saying Jessie, it’s our neighbors daughter. My heart sank.

The EMTs called for the “Jaws of Life,” but I apparently wouldn’t have that with our daughter there, so they somehow relieved pressure and got me out.

I was taken to the nearest hospital, where I was diagnosed with a concussion, neck and back injuries and sent home that same evening. Yes, same evening. The doctor instructed me to follow up with my primary within two weeks if I felt no improvements. So here’s where it’s gets interesting: went to primary within in couple days because I wasn’t improving, and I was referred to neurologist and physical therapy.

I met with neurologist, and this would be the first time I would hear the term that would haunt me forever: Post-Concussion Syndrome. I was officially diagnosed, and I feel it’s been a downward spiral since. I started PT shortly after, all the while I had perforated my colon during the collision and was never checked. It leaked for 4 weeks until it finally ruptured and I went into septic shock at home. The surgeon said if my husband wasn’t home my daughter may have come home from school to find me lifeless in the bathtub. So the PT and head injury took a backseat to the rupture. That took many months of recovery, and my husband even put a temporary bedroom in our dining room because I wasn’t able to go upstairs to bed. That was the worse pain I ever experienced in my life.

I know I’m getting a bit winded here but there’s just so much to my story, all because of a 17 year old driving while on a device…

Once I recovered from the rupture, the neurologist and therapists discovered how severe my other injuries truly were/and still are today. I’ve been diagnosed with Post-Concussion Syndrome, PTSD, vision issues, dizziness, short-term memory issues (which my last evaluation showed was severely impaired), and tremors, which we are hoping isn’t Parkinson’s. These are just a short list because I can’t remember all of them at the moment.

How has that changed you and your family’s lives?

This has changed everything! I was supposed to be going to school to be a dentist at this point. It’s sad how somebody else can control your destiny for you and completely mess you up forever. I have God awful mood swings! I’m not the person I used to be, someone who my husband could count on that he could tell me a list of things to get done in a day’s time and I’d remember to do them. He doesn’t like me to cook when I’m home alone because I forget things are cooking and walk away from them on the stove. I’m only 41 years young and trapped in the mind of a 90 year-old sometimes. This injury has put a lot of pressure on my husband to not only provide for us but to worry about me and my health. He knows my health is never going to get better, and there’s always the fear of the long-term issues with head injuries. The unknown. All because of a 17-year kid, I’m sorry to keep saying it, but sometimes I can’t believe it myself.

What are some ways you cope with your conditions?

I cope with my conditions by leaning on my husband, he makes me laugh a lot! I cry a lot. I would like to speak out more about not driving while on a device but I’m working on it. I’ve done therapy but I didn’t feel as though the therapist “got it,” if you know what I mean. I’m learning every day to cope with my condition and so are my family members. It’s harder for them since this is a harder injury to see.

What is a good day for you, what’s a bad day?

I wake up every day hoping is this the day I will be “normal” again? A good day is when I can fully function without snapping or flipping out on my loved ones, when I can actually complete a full grocery shopping trip in one trip, when I have the energy to do laundry and make beds, and when my vision issues don’t act up to the point where I can’t see.

My bad day, I feel I could dig my own grave and lay in it forever, when the ringing in my ears is so terrible (like this very minute) I have to drown it out with white noise just to sleep, when I have to take medication to sleep every night so I get brain rest otherwise, I only get 2 hours of sleep, the worst day is when I’m falling a lot and so dizzy it’s like the drunk spins but without the party.

What do you want others to understand about living with PTSD and TBI?

The one thing I would like people to understand about PTSD is it’s not something to brag about having, it’s not glamorous, this is a very serious issue. I have panic attacks, nightmares and terrible anxiety sometimes so bad I won’t leave my house because I want to avoid getting back into the car again.

I want people to understand about TBI. Think of it this way: go home, turn on every television in your home full-blast, radio same thing, have your kids play around you really loud, and have flashing lights – now get on the phone and try to pay attention. You can’t. That’s what’s it’s like to have a TBI for me. I can’t filter things out, it’s really hard to. Sometimes I just need a quiet break.

To sum it up for both, please don’t judge a book by its cover, it may be masking a bigger issue. I hide my symptoms a lot more often than I should. Just because you can’t see the injuries doesn’t mean I’m not screaming on the inside.

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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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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.

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