15 posts in the category “Depression”

Meet Ginny from the PatientsLikeMe Team of Advisors

Posted January 26th, 2017 by

Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy.  She’s also a member of the 2016-2017 Team of Advisors.

Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate and the support of others helps her deal with stigma:

What gives you the greatest joy and puts a smile on your face?

My first greatest joy that puts a smile on my face is spending time with my granddaughter! (She is 2 and the cutest girl on the planet by my biased opinion!). My second greatest joy is connecting with people using either my journey with chronic health issues, or my son’s and being able to help them. I often edit my son’s story a bit if I believe the way his life ended might cause more harm to them, especially my clients.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

People have pre-conceived ideas about depression, anxiety, and seizures and even when I try to inform them, they often bounce back to their former thinking. This causes, not just an obstacle, but sometimes a mountain between us. I have had people tell me they are “afraid of me” because of my seizures. They had been told my seizures are focal, not convulsive. I do not fall on the ground and shake, yet, they are afraid, WHY? Ignorance. I have had relatives who have shunned me due to the diagnosis, later in my life. I lost friends over the diagnosis of depression. I believe in speaking out about the conditions because I do believe we need to be the changers of the world. I know that it is an enormous task. One of my son’s epilepsy doctors was also one who had some big prejudice about the disorder. I went to him after my son’s death. He had told me that I had caused my son’s stigma. I had asked him for many years “How? How was it that I had caused kids to punch my son in the head and ask him to spaz out?” The doctor never answered me.

When we talked after Sam died I showed him the picture of Sam and Tony Coelho on a magazine cover. I asked him if he knew who that was. He did, and smiled. I told him that Tony had told Sam each year when we saw him, “Never be ashamed to talk about your epilepsy.” I told this doctor that Sam did become ashamed because the doctor told him to be ashamed. I told the doctor I believe it is up to us to change the world about how they view those of us who have epilepsy. I treated Sam no differently as I treated my father who had diabetes as I grew up. He had a medical condition over which he had no control. This specialist then nodded his head agreeing with me.

I speak to people to let them know these conditions are medical. They need treatment like a heart condition, asthma, diabetes. It is time they are not suppressed, made to be ignored, or thought shameful.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

My depression can ease up on me like someone adding weight until I cannot carry it any longer by myself. Suddenly I realize I am crying more easily for little reason. I cannot do simple tasks that used to come easily. I thought I was doing well, but have slid back into depression. This is not the same as “sadness.” I want to stay in bed, but no amount of extra sleep is enough. Concentration can become more difficult. I can be grouchier.

When my I miss my seizure medications or have long migraines, I have focal seizures. I can sense a prodrome (aura) when a seizure is coming on. My brain is just not working right during that time. My words are not able to form right or come out correctly. This can happen with both my seizures and when I have a bad migraine coming on so I try to get home to be safe. I have a long warning time, typically. During the seizure my head can feel too heavy for my neck. I am not able to talk but I can sometimes hear what is going on around me. I can have tingling in my face and hands. I will usually sleep after. Even after I wake up I am groggy and my brain is not working at full capacity. Sometimes my vision will “white out” and l have been known to send e-mail during that time that make no sense. Apparently I kept typing even though I was in a seizure. Fortunately it was to a family member who I could explain what happened!

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become informed in your condition as much as you are comfortable with from reputable sources. Find a good support network whether it is family, a support group, faith group or whatever you can form. You will do better with support around you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has been vital to me to find people who understood what I was going through! When my son was first diagnosed, I was not on the internet so it took a while for us to connect with others. When I did it felt like a miracle! Once I connected I have wanted to stay connected. When I was diagnosed a few years later I needed to speak to people about my own connection. These have been my friends for so many years!

Recount a time when you’ve had to advocate for yourself. 

I have found a medication that would be better for me as I went into menopause. I had been at the American Epilepsy Society Meetings and learned about this new medication. I called my epilepsy doctor when I returned. She was pleased to hear about the medication and was more than willing to try this for me. It gave me a return to better seizure control. My doctor is very open to what information I have for her. I have had to fight insurance companies many times for my care and for my son’s care.

What made you want to join the PatientsLikeMe Team of Advisors?

I want to be able to impact others who have chronic health conditions in a positive way. I know that the online community was what got me through years with Sam. Sharing my experiences and passing it along to others my assist them in their journey.

 

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“When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS

Posted November 4th, 2016 by

Say hello to Steve (sheronemus), a member of the ALS community who also struggles with depression. We recently caught up with him to learn about how his life has changed since his diagnosis, the importance of doing what you love and how he manages multiple conditions.

Check out what he had to say about what helps him find peace and harmony while “living with ALS, not dying of it.”

Tell us a little bit about yourself. What are you passionate about?

I am a husband, father of 4 adult children, and grandfather of 2. I am all about making life better for others, especially for those living with disabilities. That involves consulting to our city administrator about accessibility, working with my national church organization to improve inclusion of people with disabilities into all aspects of church life including leadership, building an adaptive sailing program, and launching a company that provides affordable accessible housing units for sale or lease (www.roostsuites.com).

How has life changed since your diagnosis?

Living with ALS is obviously difficult, but I also have experienced many positive changes in my life. I have more time with my family and what I choose to do with my days is more aligned with my values. I have also stopped biting my fingernails!

In the forums you talk about the importance of doing what you love, like sailing. What do you like most about it, and what advice do you have for other pALS about following their passions?

I believe it is essential to find ways to enjoy those things that give you life, that uplift you. Always looking forward to something fun affirms that we are living with ALS, not dying of it.

I used to play many musical instruments, now we go to concerts. I grew up sailing, so I worked with industry experts to devise a way for functional quadriplegics to sail a boat on their own. This summer 5 pALS and 100 people with other disabilities were able to sail in our program. 4 of those pALS had never sailed before. It isn’t as hard as you might think, and we have great instructors.

Sailing is such a liberating sport. When living life in a wheelchair, mainly in a few rooms, the feeling of leaving the wheelchair on the dock and heading out into open waters, free to go wherever you want, is pure joy. It is also a great way to spend time with family and friends.

Sailing is all about working in harmony with nature to reach your goal. There is a saying among sailors “When the wind turns against you, adjust your sails.” I feel that is a perfect metaphor for living with ALS. We can’t change the wind, but we can still find peace and harmony. Sailing is good practice in finding that balance for me.

What’s it like managing multiple conditions?

Living with multiple conditions — for me, ALS and depression — is a daily exercise in a truthful self-evaluation of where I’m at, physically and emotionally. I’ve gotten much better at asking for help when I need it. We have found, too, that looking ahead to decisions down the road and staying mentally ahead of the diseases keeps us from feeling overwhelmed. Trying to make decisions in the middle of a crisis is a really bad idea for me.

 

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Patients as Partners: Doug on learning about himself through others

Posted July 27th, 2016 by

Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and find out how Steve inspired him to look inward and re-evaluate what’s important: “I’m electing to dethrone the disease and reassert a part of my former self.”

Steve can barely move. Wants to, but he can’t.

A burly, silver-bearded, former long-haul trucker, he lives in the senior citizen one-bedrooms next door. Had to throw in the towel several years ago when inexplicable, undiagnosed joint pain made it impossible for him to drive safely. Retired early, Steve lives on a carefully-measured monthly Social Security payout. He knows enough to call what he’s got “fibromyalgia,” and he’s tried to get help for it in our rural, medically-underserved corner of California desert, but he simply doesn’t have the means. Even after Obamacare.

Every day, he shuffles out his front door, gingerly lowers himself into the folding chair outside his apartment entrance, and chats with passersby. All day. Won’t do ibuprofen anymore because of his kidneys; afraid of opioids, and can’t afford them, anyway. Steve’s only relief is a single beer, Sierra Nevada Pale Ale when he can afford it, each afternoon.

So I’m surprised when I overtake him on my walk to work last Tuesday morning, three blocks from home. Halting gait, for sure, but no cane, moving deliberately down Warren Street.

“What’s up? You okay?” I ask, hoping to learn what prompted his sojourn.

“Fibro’s been lettin’ up lately, and I’ve got a little extra cash,” he says. “Headin’ for the bike shop.”

He reads the question on my brow, and, before I can vocalize, explains, “I’m buying a used bike.” My question persists; I try to get my head around the thought of crippled-up Steve flying up a trail, or even simply coasting down the street.

“Think I might be able to ride again; figured it’d be more fun sittin’ my butt down on a moving bike saddle than sittin’ still dying on a fold-up chair.”

He smiles, wipes his brow, looks in the sun’s direction, squinting at the mountains. We move on slowly, chatting, down Warren toward town. I can tell he’s in pain, but I can tell he’s determined. And I can tell he’s excited.

………………………………………………………………………………………………………………………………………………………………………………

Winston Churchill’s “black dog” has pursued me since 1998, when I was thrust into my first major depressive episode by worries surrounding Y2K. I lost twenty pounds, I cried the night through in lieu of sleep, I had to daily reassure my kids that they weren’t the source of Daddy’s sadness. Couldn’t work, and confined myself to the bedroom. I held out on professional help for six months (macho bullpucky), on medical treatment and pharmacotherapy for eight. I lost a full year of my life that first time to ruminative inactivity. A year of my marriage, a year of my kids’ childhoods.

As the meds took hold and therapy helped me reclaim my confidence, I became a student of major depression. Learned about neurotransmitters, primal brain centers, PET scans, and diet’s effect on mood. Joined online support communities and found a site for logging my symptoms and other details. I sought out discussion of historic and current medication protocols and information on emerging electric/electromagnetic therapies. I even found academic papers that argued depression could be an evolutionary adaptation. In short, like scores of other PatientsLikeMe members, I became an expert on my malady.

But my Tuesday morning stroll with Steve raised big questions. Did I really need to be as expert as I had become? (Did I need even to be on the Team of Advisors?) My family had been strained enough dealing with the depression itself. Did the addition of a couple of hours, isolated, reading all of the latest on mental illness every morning provide more benefit than if I’d just spent that time with my wife or kids instead?

Steve, when presented with an opportunity, elected to act contrary to his disease. To ignore it. When his joints allowed, and while he still had reasonable strength and balance, he got back on the proverbial horse…or mountain bike. He didn’t spend the regained time, comfort, and strength his “remission” afforded learning more about his disease; he sought to regain a part of his former life, a part that provided him great pleasure. In my efforts to master my disease and feel like I had some control in a miserable situation, had I unknowingly shot myself in the foot?

Depression had to some degree taken me away from life; had studying the condition ad nauseam simply moved me even further from it?

I’ve been “coming back” now for some six years, after being gravely injured by a drunk driver, losing my marriage (and ready access to my three children), and enduring a years-long emotional decline that saw me into psychiatric hospitalization and a couple months’ worth of electroconvulsive and outpatient therapy. The post-ECT psych-drug regimen they’ve got me on now does a number on my emotional range (what range?) and plagues me with crappy side effects, and I’ve continued research to see how to abet my situation.

But I’ve increasingly become more Steve-like, too. Ventured back into relationships and found a wonderful partner. Travelled independently (first time in eight years) to NYC to see my daughter and her husband last fall — I even attended my first theatre in a decade (I had formerly been a professional actor). I’m a depressive, yeah, but I’ve decided — and Steve reinforced that decision — not to let that label serve as my singular definition. I’m still trying to start a bipolar/depression support group, still counseling and messing with my pharm cocktail, and still working with PatientsLikeMe as an advisor. But I’m trying not to succumb or obsess.

I believe other PatientsLikeMe folks might also benefit from auditing their day-to-day and learning where they’ve allowed their (totally understandable) prepossession with their condition to eclipse possibilities for a richer life. After Steve rearranged my thinking the other morning, I went home and read a one-man play I’d heard about from friends. I decided to perform it next fall. I’m working on rights, finding crew, putting together an agreement for using a local space, even thinking about the possibility of performing it in schools or on tour.

The fact that I’m depressed will shape the way my experience unfolds, but obsessing over it won’t preclude that experience altogether. I’m electing to dethrone the disease and reassert a part of my former self.

………………………………………………………………………………………………………………………………………………………………………………

Steve mounts his new used bike outside on the street. He’s fragile, even tottering, as he balances. He’s really slow, and I worry that he’s not wearing a helmet. But he moves determinedly up and down our block. He’s obviously in considerable pain, and his forehead is shiny with sweat. And the smile on his face tells me he’s undeniably happy, despite the challenges. So am I. I dive back into scoring my script.

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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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Touched with fire: Harnessing the fire of bipolar

Posted February 25th, 2016 by

Over the last few weeks, new PatientsLikeMe member Paul has been opening up about living with bipolar and how this condition inspires his art. Touched with Fire, a debut feature film now playing in select theaters, was written, edited, directed and scored by him and draws on his personal experiences.

Discovering Kay Jamison’s book of the same name gave a new meaning to his condition when he needed it most. With the management of his bipolar now a finely tuned process, Paul says the most important thing is to “learn how to thrive in it. Not just get by in it, and not to be destroyed by it.”

Here’s what Paul has to say:

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Share your own experiences and connect with more than 70,000 members in the Mental Health forum on PatientsLikeMe.

 

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Meet Doug from the PatientsLikeMe Team of Advisors

Posted February 19th, 2016 by

We’d like to introduce you to Doug, another member of your 2015-2016 Team of Advisors. Doug is an actor, teacher and writer living with major depressive disorder (MDD). He’s been tracking his health on PatientsLikeMe since 2008.

Doug feels there is a lot of stigma surrounding the term “mental illness,” and shares that one of his biggest challenges has been opening up about his depression. He believes that MDD isn’t talked about enough in society: “We’ve got to figure out how to encourage the sensitivity and understanding.”

Here, Doug describes a vivid picture of what it’s like to live with depression and offers some advice to other patients: Find others living with your condition, and know that you’re not alone.

What gives you the greatest joy and puts a smile on your face?

My kids, their antics and achievements, their growth, even their mistakes, are what get me up in the morning. Drawing closer to seeing or speaking with them is probably my greatest motivator. It’s funny, though; I wouldn’t label what they bring as ‘joy,’ per se. When you’re living with chronic Major Depressive Disorder, and when you’re treated with an affect-flattening medication like lithium, joy all but falls out of your vocabulary. But my kids are definitely the closest I come. My extended family, my girlfriend, creating theatre and my faith all fall in close behind.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Perhaps the greatest obstacle I’ve had in living with depression, aside from considering self-injury or enduring an episode itself, has been personally and openly admitting that I suffer from what society and medicine deem a “mental illness.” Though it may help some folks (docs) with classification, I usually find it a fairly useless, divisive, overly-general, stigma-laden label. Yeah, it may be practical to use medical terms to initiate basic understandings, but I now try to move other folks I affect or who affect me past the crappy designations and into how the disease (and the medication/side effects) actually manifest themselves in my life. Moving past the ill-connoting “mental illness,” with its lurking suggestions of some sort of moral turpitude, loss of touch with reality and personal weakness or inability to perform/produce, I go into the specific realities of this dad’s/teacher’s/actor’s/partner’s life: how I deal with occasional flat effect, distraction and crying episodes; what Electroconvulsive Therapy actually consists of and why it had to be administered to me; and the prescription side effects like word-fishing, tardive dyskinesia and even ED.

When people are moved past the general and abstract toward the specific and concrete, I think we begin to enter productive territory and can make inroads. We’ve got to figure out how to encourage the sensitivity and understanding that come with specificity.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I’ve tried for figurative examples of “normal” human experience that people could magnify and see themselves in, but it usually doesn’t work. I often simply describe my own experience…

Imagine a trained general practitioner making fun of you for your “pretend” gut ailments, asking if you want to “man up” or whether he should prescribe you some Prozac. Imagine trying to choose the former when what you really need is the latter. Imagine suffering the consequences of foregoing treatment…

On the slide down, imagine crying in four-hour stints. Imagine trying to convince your three kids that Daddy’s crying has no relationship whatsoever to them, to what they’re doing, to their innate value or to your profound love for them. Imagine being so distraught that you don’t sleep for a month. That you forego food. That you lose 30 pounds.

Imagine not wanting to wake up. Ever. For weeks. And Imagine feeling that way even when no horrible incident, no traumatic scene, no injury had prompted it. Imagine never wanting to wake up, and for no particular reason.

Imagine not wanting to bathe. Imagine deriving no comfort from the warm water streaming down your body on a cold winter’s day in the shower when you finally get there (you’re mother’s been urging for a couple days now, and finally actually led you by hand into the bathroom).

Imagine finding yourself on a psychiatric ward, where they’re weaning you of meds so as to treat you with ECT. You learn your parents delivered you there (you’re 49 years old and live some 10 hours from them); you don’t even remember them delivering you (motivated forgetting).

I could go on, but I think this gives you an idea. Folks who haven’t done significant time with depression probably don’t understand these illustrations, but they may find a point to connect, or, at the least, be struck by such a profoundly different human experience. These examples, if nothing else, begin to point at the devastation depression creates.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Get armed with info and understanding. Do your homework. Find real, live people like you who deal with the same condition. Talk with them, listen to them, come to see that you don’t stand alone and that there are others who understand. Internet is good, but real life is better. Dive into your faith.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe has done three major things for me. I had been logging basic baseline mood and other information on a smaller website when I learned of PatientsLikeMe. The stuff I’ve laid into the site chronicling my illness over the past eight years has served as a solid longitudinal record of the trajectory of my depression and PTSD, a record arguably more significant to me than my formal medical records. In addition, PLM has provided community; through site content and interaction with my fellows, I’ve gained insights and support. I’ve also been able to offer my own impressions and understandings in public forum, and, finally, through working on the PLM Team of Advisors, I’ve been prompted into deeper advocacy and peer support.

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Touched with fire: A meaning behind the suffering

Posted February 18th, 2016 by

We’ve been talking with new PatientsLikeMe member Paul, whose debut feature-film, Touched with Fire – inspired by his experiences living with bipolar – opened last week in select theaters. 

For Paul, the road to diagnosis was more like being on a rollercoaster. Years of using marijuana seemed to stimulate his creativity at film school, but culminated in the manic episode that would shape the rest of his life. His diagnosis was not the divine revelation he interpreted it as, but the triggering of a lifelong disease: bipolar disorder.

Here’s how Paul describes this time in his life:

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Share your own experiences and connect with more than 70,000 members in the Mental Health forum on PatientsLikeMe. 

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Food for thought: healthy eating in 2016

Posted January 27th, 2016 by

A lot of people talk about smartening up their diets at the start of a new year. Over the past month, many PatientsLikeMe members have shared eating habits they’re going to keep and the new ones they’d like to start in 2016 — everything from cutting down on salt to going vegan. Take a look at what some people said below:

“I’m not changing my eating patterns. I eat anything I want, just in moderation. I shy away from processed food, limit my salt intake and eat lots of fruits and vegies. I try and snack healthy, although this is hard.”

-MS member  

“I am going to be taking a complete overall look at my diet, as I don’t look after myself anymore, and I am going to try and get back on track!”

-Fibromyalgia member

“My diet excludes all animal products. That means no dairy, no eggs, and no meat or fish. I eat a wide variety of grains, legumes, vegetables and fruit. I avoid processed sugars and use coconut sugar or agave, for example. I made these changes approximately three years ago. I am healthier because of my vegan diet.”

-Major Depressive Disorder member

“I’ve been gluten free since Sept. 2015. I have felt better. I have also added gradually, vitamins and supplements. The most important one being D3. I now am day 3 of 5000iu D3 daily. I also take Omega 3/fish oil daily. Added calcium, C Complex, magnesium, Acetyl L Carnitine, CoQ-10, and B, Glucosamine & Chondroitin. I’m better than I was, more energy, less pain, and IBS is way better. I’m saying this works for me. Consult your doctor before going this route. Looking forward to my best year in a very long time.”

-Fibromyalgia member 

“Since I found out I have MS and cut down on inflammation, I eat very little red meat and pork. Have also cut down on processed food and salt. Feeling better!”

-MS member

Do you have any goals for eating healthy in 2016? Share them with the community!

If you missed our other Food for Thought posts, check out the previous editions here.

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Mental Illness Awareness Week: #IAmStigmaFree

Posted October 5th, 2015 by

The National Alliance on Mental Illness (NAMI) spends the first full week of October fighting stigma, offering support, educating the public and advocating for equal care for those living with a mental health condition. While these are a year round focus for them, this week highlights mental illness awareness and 2015 marks its 25th anniversary.

#IAmStigmaFree
This year’s theme revolves around building momentum through the new StigmaFree initiative. Being stigma free means:

  • learning about and educating others on mental illness
  • focusing on connecting with people to see each other as individuals and not a diagnosis; and most importantly
  • taking action on mental health issues and taking the StigmaFree pledge.

Did you know…

  • 1 in every 5 adults – 43.7 million – in America experiences a mental illness.
  • 50% of all lifetime cases of mental illness begin by age 14 and 75% by age 24.
  • Nearly 1 in 25 adultsapproximately 13.6 million –in America live with a serious mental illness.[1]

Mental Illness Awareness Week encourages people to come together to improve the lives of the tens of millions of Americans affected by mental illness.

How can you get involved?
You can learn how to spread awareness this week on the NAMI site. You can involve friends and family in a movie night, book club or awareness day at work or school. Share your story on the You Are Not Alone page. Engage your community in advocating for mental health. Learn the facts. Or join a NAMI Walks team.

National Depression Screening Day
Held on October 8th, during Mental Illness Awareness Week, National Depression Screening Day (NDSD) is comprised of awareness events that include an optional screening component.

National Depression Screening Day began in 1990 as an effort by Screening for Mental Health (SMH) to reach individuals across the nation with important mental health education and connect them with support services. Today, NDSD has expanded to thousands of colleges, community-based organizations, and military installations providing the program to the public each year.

So however you choose to get involved this week, don’t forget to log in to your PatientsLikeMe community to continue sharing your own stories with others.

Let’s fight stigma, together.

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http://www.nami.org/Learn-More/Mental-Health-By-the-Numbers [1]


Recapping with our Team of Advisors!

Posted June 19th, 2015 by

Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team is wrapping up their year-long term as advisors, we wanted to make sure we update the community on all the hard work they’ve done on your behalf!

First Ever In-Person Patient Summit in Cambridge
Your team of patient advisors travelled from all over the country to join us for 2 days here in Cambridge. They met with PatientsLikeMe staff, got a tour of the offices and began their collaboration together as a team!

Blog Series
The advisors have also been connecting with the broader community as part of an ongoing series here on the blog! This is an impressive group and we hope you’ll read through to learn more about the team.  Some of the interviews featured so far include profiles on BeckyLisaDanaEmilieKarla, Deb, AmySteve, Charles, Letitia and Kitty. If you haven’t had the chance to read their stories and what they’re passionate about yet, feel free to check these out!

Best Practices Guide for Researchers
As part of their mission, this group discussed how to make research more patient-centric and ways that researchers can learn to better engage with patients as partners. Out of this work, the team developed and published the ‘Best Practices Guide for Researchers’, a comprehensive written guide outlining steps for how researchers can meaningfully engage patients throughout the research process. You can hear more about the whole process in this exciting video from some members of the team as they discuss their experiences with the creation of this guide:

Community Champions
The advisors have been wonderful community champions throughout the year, providing invaluable feedback about what it’s like to be a person living with chronic conditions and managing their health. This team has weighed in on new research initiatives, served as patient liaisons and been vocal representatives for you and your communities here on PatientsLikeMe. Whether it was sitting down with a research team to give their thoughts on new projects, discussing their experiences with clinical trials, giving feedback about medical record keeping or opening up about patient empowerment – this group has been tireless in representing the patient voice and PatientsLikeMe community!

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Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

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

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

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

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

 

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

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

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Depression Awareness Month- What does it feel like?

Posted October 26th, 2014 by

Here at PatientsLikeMe, there are thousands of people sharing their experiences with more than a dozen mental health conditions, including 15,000 patients who report major depressive disorder and 1,700 patients who report postpartum depression. What do they have to say? This word cloud has some of the most commonly used phrases on our mental health forum.

It gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health. But the best way to increase awareness and knowledge, we believe, is to learn from real patients. To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

  • “My last depressive state felt like I was in a well with no way to get out. I would be near the top, but oops….down I go. I truly felt that I would not be able to pull myself out of this one. I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
  • “It feels like living in a glass box. You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it. You are totally alone although surrounded by people.”
  • “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success. At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step. You try yelling for help, but no one hears you.”
  • “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning. I can’t run. I can’t walk or crawl. In fact, I have no options. I have no memory of how I came to be there. I know I’m going to die, I don’t know when or exactly how. There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear. My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions? If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.

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It’s time to recognize mental illness in October

Posted October 6th, 2014 by

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

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

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

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

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“Mind your health” – Recognizing mental health in May

Posted May 2nd, 2014 by

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

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

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

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

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

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