depression

Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

1 Comment / Conditions, Depression, Epilepsy, Patient Experiences / By

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds of members report living with epilepsy along with depression and/or anxiety. “I’ve had anxiety from my earliest memories,” she says. In her early 30s, she also began experiencing MDD. She was dealing with a move, very active children, and worsening migraines, pain and other symptoms. “It was the perfect storm,” she says. Read on for more of her story, plus her tips for women dealing with multiple health conditions in their family. My name is Ginny. I had 12 years of misdiagnosis, until I was appropriately diagnosed with epilepsy, psoriatic arthritis, major depression and anxiety. In the middle of dealing with my own health issues, my son was diagnosed with epilepsy. I felt overwhelmed – extreme exhaustion beyond the norm for a mom and wife. When I started Topamax, a seizure medication for my epilepsy, it raised my anxiety and I told my neurologist I …

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World Health Day 2017: #LetsTalk about depression and mental health

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Today is World Health Day! This year, the World Health Organization (WHO) hopes to spark discussions about mental health with their campaign called “Depression: Let’s talk.” Depression affects more than 300 million people of all ages, from all walks of life, in all countries – but less than half of people with depression (even less than 10 percent in many countries) receive treatment. “The stigma surrounding mental illness, including depression, remains a barrier to people seeking help throughout the world,” according to WHO. “Talking about depression, whether with a family member, friend or medical professional; in larger groups, for example in schools, the workplace and social settings; or in the public domain, in the news media, blogs or social media, helps break down this stigma, ultimately leading to more people seeking help.” In honor of World Health Day, WHO encourages you to use the hashtags #LetsTalk and #depression, as well their predesigned apps and graphics to spread awareness over social media today. Don’t go it alone WHO suggests talking to someone you trust about your feelings. “Being emotionally mature and authentic to those who are close to you can be an absolute game changer,” says Matthew Johnstone, a writer/illustrator who …

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“I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story

Conditions, Depression, Patient Experiences / By

“Aletha Meyer Pinnow, 31 … died from depression and suicide on Feb. 20, 2016.” So begins the obituary that Eleni Pinnow penned about her sister for the Duluth (Minn.) News Tribune. The candid obit went viral and struck a chord with countless readers – in the mental health community and beyond – so Eleni followed up with a piece in The Washington Post called “I told the truth about my sister’s obituary, so that others might choose to live.” We recently talked with Eleni, who is an associate professor of psychology at the University of Wisconsin-Superior. She shared more about her sister’s life and struggles, the stigma surrounding mental illness and her own experience with managing depression. You and your sister were really close. Do you have a favorite memory about her that you can share with us? One of the things that somebody said to me at my sister’s memorial was that when you were with Aletha, it was totally okay to just really be who you were and let your freak flag fly. I think that was really true; Aletha took people as they were. One of my favorite memories of her was when were adults and we …

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Meet Ginny from the PatientsLikeMe Team of Advisors

1 Comment / Conditions, Depression, Epilepsy, Patient Experiences / 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 …

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

1 Comment / ALS, Conditions, Depression / 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 …

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Patients as Partners: Doug on learning about himself through others

1 Comment / Depression, Fibromyalgia / 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 …

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Meet Doug from the PatientsLikeMe Team of Advisors

Depression, Mental Health, Patient Experiences / 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 …

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Food for thought: healthy eating in 2016

Conditions, Depression, Fibromyalgia, Multiple Sclerosis / 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 …

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

Conditions / 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 …

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Getting to know our Team of Advisors – Kitty

1 Comment / Mental Health, Patient Experiences / By

Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand the needs of both her patients and others. About Kitty (aka jackdzone): Kitty has a master’s degree in marriage, family and child therapy and has worked extensively with abused, neglected and abandoned children in foster care as a social worker. She joined PatientsLikeMe and was thrilled to find people with the same condition who truly understand what she’s going through. She lost her job as a result of her MDD, which was a difficult time for her. Kitty is very attuned to the barriers those with mental health conditions might face, and has great perspective about how to be precise with language to help people feel safe and not trigger any bad feelings. Kitty is passionate about research being conducted with the patient’s well-being at the forefront, and believes patient centeredness means talking with patients from the very beginning by conducting patient surveys and finding …

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