12 posts from February, 2017

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

Posted February 24th, 2017 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 went on a vacation to Harry Potter World and we were at Universal Studios. And at Universal they have the Jurassic Park theme ride. We were there in January, and the Jurassic Park ride was a water ride. So it was relatively chilly and we just rode it over and over. We stayed at a park hotel so we were allowed to skip to the front of the line. We were soaking, it was absolutely freezing and we were sitting in the ride being like, “Oh this is so lovely” – just being really silly. It was a really fun experience and it just felt nice to be with my sister in that way.

When you started “telling the truth” about how Aletha died to family and friends, how did people respond?

My family is relatively small — my parents and I, and then we have some cousins, some aunts and uncles. But we aren’t a terribly a close, close family. My parents were on board right away…it wasn’t something that was surprising to them. And for me, personally, I was in a lot of shock, so it seemed like the natural right thing to do. A lot of people were really, really surprised. When I told one of my friends, she at first didn’t believe me.

So a lot of times I think people were just in disbelief, but that might also have happened if Aletha had died in a car crash or something. In general, I think from my friends and her friends and our family, there’s just an outpouring of love for Aletha and my nuclear family. My coworkers were just incredibly supportive. And then I started hearing from people who’d read the obituary, and they were all just wanting to be heard. I think people don’t often listen to people who have depression or are suicidal or have survived suicide attempts.

And how about when your essay was published, what kind of feedback did you get?

Being a public employee, it was very easy to find my email address, so I got between 400 to 500 emails from people I didn’t know and probably about that many Facebook messages from people I didn’t know. It really hit something. There was something there that people really wanted to talk about – suicide and depression – and I think this gave them an avenue to either start the conversation with a stranger or hopefully to talk about it in their own lives.

What do you think needs to happen so that people can have open, productive conversations about suicide and depression? What’s standing in the way?

I think a lot of it is: people don’t really feel safe bringing it up because they think that there is going to be some judgment, and in some non-guarded moments, I have heard of some judgments.

My friend is an English teacher, and once a week they’ll read articles from the news and the students will write reflections on it. And so she did that with some of the coverage about my sister’s death. And it was really interesting because the students didn’t ever think I was going to read it. And some of them were really beautiful about the need to reach out and how they really want to support people, but then there were some that were like, “Well, her family must have known something.” Or, “I find it hard to believe that if they really cared about her they wouldn’t have seen this,” or “There must have been something else going on. It couldn’t have just been depression – depressed people don’t kill themselves.”

And so I think people hear that, either casually from friends and family or something else, or they hear the message that suicide is selfish or depressed people just need to “snap out of it.” I think that people are aware that there is a lack of compassion and lack of understanding and empathy for people that deal with those issues, and so there isn’t a safe place. Because if you’re already suffering and already struggling, and you know that acknowledging that is just going to increase your suffering, you’d be crazy to ask for help.

What other kinds of stigma and misunderstanding surrounding depression and mental health do you think needs to be addressed?

I think it’s just something we have to get more practice talking about because if you think about the sheer number of people who have lived with mental illness in this country it’s really staggering…that in any given year one out of five people experience mental illness. Who that one is out of five, is probably going to rotate. There are people that are going to live with it their whole lives but then there are people that might experience depression and anxiety for a year, and then go into remission.

And I think it’s just a real fear and real sense of isolation. The mental illness plays into that as well. Part of what feeds mental illness is this desire to keep it secret because you don’t want other people to find out, and that kind of stuff. So it’s really just a perfect storm of disordered thinking and the stigma together that just makes it really difficult for people to come out. So I think there needs to be a national-level dialogue about it.

And that was one of the reasons why I just absolutely loved Carrie Fisher. She was bipolar and she didn’t really care who knew it, and she saw it as a part of her and not something she should be ashamed of, not something terrible. I really admired her, and even though I didn’t know her, that loss hit me. Because here you had someone who was smart and funny and engaging and open about it. I think we just need to have more people say, “This is my experience with mental illness. I’m not crazy, I’m not bad, I’m not going to do anything horrible, I’m just really suffering.” Hopefully other high-profile people will step up and say, “This is something I struggle with as well.”

And that’s one of the reasons why I try to advocate for person-first language: you’re not a “depressed person,” you’re a “person with depression.” Embracing person-first language is really critical to helping people see you’re not just bipolar disorder, or schizophrenia, or depression, or OCD —  you’re a whole person, and this is one part of who you are but there is so much more to you that that. I think that’s where suicide works its way in. The depression or mental illness takes over to point where the person loses their sense of personhood and overwhelmingly identifies with the disorder instead of their shared humanity.

You’re also living with depression — how do you cope with depression’s “lies” in your own life?

For me, a lot of it is managing through routine. The way that my distorted thinking happens is, “Well, it doesn’t matter if you don’t exercise today. It doesn’t matter if you don’t shower today. Everybody deserves a break. You can just take this one day off.” And the problem is once that happens, inertia sets in, and I’m less likely to do it the next day and the next day.

So it’s really critical for me to say that every single thing I do in my life, especially when I’m struggling, matters. It matters that I decide to get up and eat breakfast. It matters that I decide to eat a healthy lunch, that I eat dinner. It matters that I walk the dog. It matters that I do something other than just sit around and watch Netflix.  I think that’s the lie: “You deserve a break, you deserve to not have to worry about anything.” That just makes it so much worse. For me the lie is just: let the depression win for a day. And then tomorrow you can get back to being good…it just keeps getting pushed further down the line, so I’m not engaging in my self care, I’m not doing anything to show myself that I matter or anything. So that’s where it can really spiral in a bad way, if I’m not doing anything, if I’m isolating myself from my friends and not seeing anyone as much, not talking to people. And it just takes me to a really not great place.

What kind of advice do you have for people living with depression who use online communities like PatientsLikeMe?

I think the best thing that people can do is to figure out what makes them feel a little better. And commit to doing that for themselves. When I think about my sister and when I think about myself, I’m always willing to do something nice for my husband or my parents or my students, always willing to try and help them, but I’m not always willing to do that for myself. So I know that nothing will make me feel better for several hours than going and getting my heart rate up for a half hour, 45 minutes, an hour. I know that nothing in the world will be better. But then I’m like, “Oh, well this student really needs the support,” or something else, so I neglect that. I think sometimes it’s okay to say, “I really have to do this for myself, because otherwise I’m going to go to a not great place.”

Everyone is really good at advocating for the needs of others, but identifying your own needs and speaking up for them is probably the most important gift you can give yourself, because then you can start to counter this idea that all you are is your mental illness. You’re starting to do something for yourself, you’re starting to prioritize yourself and prove to yourself that you really matter, and I think that’s really critical.

After my sister passed away, one of her friends said that he felt that Aletha was like a watering can. She was always watering her other friends and nourishing them and helping them grow, but all of that was depleting her and taking away some of her resources. So once her water ran out, she didn’t know what to do next. She didn’t have a way to deal with that and cope with that. You have to prioritize yourself.

 

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Member Chris finds the uplifting side of type 1 diabetes

Posted February 23rd, 2017 by

“I am the only 7-fingered diabetic record-holding powerlifter and motivational speaker you know!” Chris (ChrisRuden) says in his profile. He was born with two fingers on his left hand and a shorter left arm. He was bullied in high school, and he struggled with depression, alcohol and drug use.

Chris was diagnosed with diabetes at age 20, when he was in college studying law. His diagnosis inspired him to shift his focus to health and wellness (personally and professionally), and he earned a degree in Exercise Science and Health Promotion from Florida Atlantic University. He runs an online nutrition and fitness coaching business and he published an e-book called The Art of Losing Body Fat. He holds four state records in powerlifting (with one hand)! He is also a motivational speaker who has given talks at schools, businesses and organizations like the American Diabetes Association across the U.S.

We recently caught up with Chris about his interests, overcoming adversity and the upshot of his diabetes diagnosis.

What are your three favorite things to do? What do you love about them?

I love powerlifting, speaking and helping people get in shape! Powerlifting allows me to compete against myself and push my limits. Learning to lift properly as an amputee and learning to stabilize my blood sugar while lifting with diabetes was tough. But I love the challenge and satisfaction of working towards a goal and achieving it – no matter how long it takes. Speaking is my passion because I get to share stories that help people overcome hardships in their lives. Speaking allows me to be honest and real with the audience. There is nothing better than people writing me months after a talk or seminar about how they are still motivated and fueled by my talk. Helping people get in shape online is my business, but it is also my passion. I know what it is like not to be confident in your body, and I get the chance to help people with that mental and physical struggle daily.

How did growing up “being different,” as you say in your profile, shape your life? Has it helped you adjust to life with diabetes?

I was bullied and picked on for being different. I tried to stay strong as much as possible but it was hard and depression did get to me. It took a while to figure out that other kids or teens who would make fun of me for something I can’t control probably have a lot of personal issues they are dealing with. I focused on doing the best I could with what I had, and that philosophy carried over into my diabetes management. I was mentally prepared to handle the burden of diabetes because I knew it took the right mindset to thrive.

Could you share your diabetes diagnosis story with us? Why do you consider your diagnosis “the best thing to ever happen” to you? 

I was actually working in the ER at the time I was diagnosed. Weeks prior, I had been going to the bathroom 20+ times a day and I was so thirsty and irritable. My mom worked for a urologist in the same building so we did a urine test just in case, and I was admitted to the hospital with a blood sugar of 510. If it weren’t for diabetes, I would’ve never switched my major from law to exercise science, I wouldn’t be working with other type 1’s in the community, and I wouldn’t have found my true calling in life.

It seems like defying limits is a big theme in your life. What are some limitations that you’ve shattered? What motivates or inspires you to live this way?

Limits are problems and all problems have solutions. I have broken a few state records in powerlifting, deadlifting over 600lbs when the original limit was thought to be: “I can’t deadlift because I’m missing a hand.” Playing drums by sticking a drumstick through a glove finger hole was another limit. I also shoot guns, go fishing and occasionally rock climb. Some might see that as overcoming limits; in my case I just call it living.

What advice do you have for someone dealing with multiple health issues or going through a rough patch with their health?

Keep going. Think logically on what you can do on your part. Do the best you can with what you have where you are right now. By focusing on what you can control and not what you can’t control, life becomes a little more clear.

As a new member, what’s your experience on PatientsLikeMe been like so far, and what are you most interested in learning more about going forward?

I love the community and I’m really interested in just learning about other peoples’ perspectives and how they manage daily. I love to see people succeeding, regardless of how big the success or how hard the obstacle.

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Communicating drug risks/benefits so the message really gets through

Posted February 22nd, 2017 by

Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts.

Sally, who also participated on the roundtable panel, says requests for patients to participate in events and meetings such as this are increasing: “There’s a lot of interest from the pharmaceutical industry and regulators to hear directly from patients about their experiences. Jim’s presentation was quite powerful and provided a perspective that most in the room had not heard before. The positive response from the audience reaffirmed the value of bringing the patient voice into the full lifecycle of drug development.”

We asked Jim to share his experience (from the patient perspective) attending and presenting at the conference. In his own words:

When it comes to treatment options, patients like us routinely face difficult treatment decisions such as: “Drug X can treat symptoms of your chronic condition and might improve your long-term prognosis. But, 5% of patients on Drug X experience serious side effects, and in rare cases, complications can be fatal.  So: is this a risk you’re prepared to take?”

Question: Now, suppose you worked for a pharmaceutical company or the FDA and were assigned to inform patients like us about Drug X’s drug safety and risks/benefits: what should your primary goal be… provide clear, comprehensive and scientifically accurate advice about all of Drug X’s pros and cons?…OR… help patients review and evaluate information from any source — not just your communication, but also sources like WebMD, PatientsLikeMe, friends and family, and social media — in order to make more effective treatment decisions for themselves?

For participants attending the Drug Information Association (DIA)’s Pharmacovigilance Conference January 17‑18, 2017, this wasn’t a hypothetical question, because their job is to design and develop drug advisory communications for patients and providers.

I recently joined PatientsLikeMe’s Team of Advisors for 2017 and belong to three PatientsLikeMe patient communities (MS, chronic lymphocytic leukemia, and aortic valve insufficiency). My plenary presentation focused on how patients would answer the question above — or, more accurately, how I would answer it.

I began by asking conference participants to raise their hands if they’d ever taken a medication (100%); how many had ever read an entire drug insert from start to finish (≈ 2%); and finally, how many had read a few targeted sections of a drug insert (≈ 50%). The key points here were that (1) regardless of what information they should seek in an ideal world, practically all patients, even if it’s only for a headache or a chest infection, tend to “zero in” on just the information that seems most vital to them for making a treatment decision. And, (2) in the case of serious chronic conditions, the way newly-diagnosed patients “zero in” is dramatically reduced; so, (3) safety communicators should focus more on helping patients recognize the  value of considering more useful information rather than less when reaching a genuinely effective treatment decision, and feel confident in their ability to evaluate any source of information available to them.

To illustrate, I walked conference participants through four treatment decisions I’ve personally had to make to show in each case: (a) what objective information — a tiny fraction of everything available — I actually considered, (b) how my emotions (shock, fear, anger, confusion, etc.) had influenced the way I weighed that information, and (c) the one or two factors that turned out to be key to reaching a decision that was both effective and emotionally sustainable for me.

For instance, when diagnosed with chronic leukemia, I was invited to join a clinical trial.  The key objective information I considered included:

  • Risks of the trial (identified and unknown)
  • the +’s and –‘s of standard 1st-line treatment
  • Requirements for participation
  • Costs of participation.

Emotional factors which dominated my thinking at the time included:

  • Desire for the longest possible remission
  • Logistical complexity of participation
  • Perception of this doctor’s stake in having me join the trial
  • My desire to be a good citizen-hero

And, in the end, the driving factor which influenced my decision not to participate in the trial was the fact that the trial’s logistics would have been incompatible with my work life.

After reviewing three other key treatment decisions in the same manner, I summed up three key observations from the patient’s point of view that drug safety communicators should keep in mind when designing their communications:

  1. Personal, emotional and family factors dominate most patients’ perceptions of the objective information they look at
  2. Since major health care decisions are made under the press of time and powerful emotions, they generally have less to do with objective facts about a medication than the patient’s feeling about what’s best
  3. Objective information about a treatment’s +’s and –‘s counts, but only at certain points in the patient’s decision-making process if/when s/he feels calm and self-confident enough to do so

With these in mind, my key takeaway for conference participants was that they should design their drug safety communications first to help patients find a calm, centered place from which to consider and weigh drug information from any source, and only second to focus on the most important, scientifically accurate information about a drug’s risks-benefits. Those would be my priorities for drug communicators…. but would you agree?

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“I feel it needs to be told”: Member Cathy shares a memory

Posted February 21st, 2017 by

Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory.

Here’s what she had to say…


“I have been saving this story for a while. Don’t know why but I feel it needs to be told. It is just a little story. No twists. No turns. No big reveals. But still. A story to be told.

Around this time last year, I ran the very quickest of errands. Fred was at a time of his illness we seldom left him alone. The kids and I we were a team in hanging with him. But we have lovely neighbors close and a prescription was needed, so just for the littlest of time, he was hanging alone. But that isn’t the story.

It was when I returned that the story began. As I’ve noted many times before, Fred went to too many concerts in the sixties. He always said that. Yet, on returning from my errand, I walked in to find Woodstock live in my home. It was 1969 again.

Jimi Hendrix was playing. So was Janis Joplin. Jefferson Airplane. Canned Heat. Still not sure why John Sebastian was there. Guess we will never know.

Those who knew Fred knew he never danced. Cotillion had ruined him. But there he was, dancing as best he could dance. Stomping his foot to Hendrix, occasionally playing air guitar. I dropped the prescription and immediately joined in.

For just a little time, the joy was back. 

Thank you Santana.

I still have Woodstock on the DVR. Haven’t played it since. But I tell this story because it is a testament to ALS. It is a story of hope, of perseverance, of determination. I was always so very proud of Fred, he was my very best friend. Yet it was in that moment I saw his deep abiding strength. I saw in that moment that though ALS had robbed him of his body, it would never steal his spirit or take away his soul. In the year that he has been gone, I write these little stories to keep his memory, my memories strong. I continue to walk the ALS walks. I continue to be loud.

ALS is a beast. We WILL defeat.”

#kickoutthejams #hopeisstrong

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What do PatientsLikeMe members think about the Affordable Care Act?

Posted February 16th, 2017 by

With a new administration in Washington, the future of “Obamacare” is uncertain. So we wanted to know: What do patients think about potential changes to the Affordable Care Act (ACA)? More than 2,000 PatientsLikeMe members recently shared their thoughts in the largest patient poll on the 2010 health care law.

Previous large-scale polls about the ACA focused on the general population, rather than specifically asking people with health conditions to weigh in. But in this poll, we heard directly from 2,197 members living with a variety of conditions, including MS, fibromyalgia, Parkinson’s, depression, ALS, diabetes and cancer.

“Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.”

‑ Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety

Overall, PatientsLikeMe members have similar feelings and concerns about the ACA as the general population. But patients – who have regular, real-world health care experiences – see some benefits that the general population might have overlooked. Take a look at these snapshots of some key findings from the poll (tap each graphic for a larger view).

No go on repeal

Those who took the PatientsLikeMe poll* were more likely to oppose a repeal of the ACA than the general population**.

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What should be scrapped?

When asked which one component of the ACA they would eliminate, if they were forced to choose, patients were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.

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How helpful is the ACA?

More than 37 percent of patients said the ACA has been “very helpful” for people with chronic conditions, while nearly 20 percent said “somewhat helpful.” Also, nearly half of patients (46%) said the ACA needs only minor modifications.

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Strong opinions stand out

People living with major depressive disorder (MDD) as their primary condition were more likely to oppose a repeal of the ACA. The MDD community may have a stronger stance on recent health care policy because of a 2013 rule requiring insurers to cover mental health and addiction issues equally to physical health ailments.

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Money talks

Lowering costs is a priority for both patients and the general population. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. And lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.

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“I think the problems with this health care program affect those individuals who are caught in the cracks … who do not make enough but do not make so little that they are covered by government programs,” said member Randy, who took the poll. “But we had these problems before the Affordable Care Act. So we need to fix [it], not take [it] away completely.”

What do you think about the ACA? Do you have a different take? Jump into the forum and keep the comments coming. Your voice – the real-world patient voice – matters.

 

* See the full report on the PatientsLikeMe poll.

** General population results came from a 2016 Kaiser Health Tracking Poll.

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Meet Christopher – “PTSD is not just soldiers whining and complaining about struggles in life”

Posted February 15th, 2017 by

Say hello to Christopher (ChrisBC), a father, musician and Purple Heart recipient living with PTSD and bipolar disorder. We recently caught up with him to hear about how PTSD affected his marriage and how his diagnosis pushed him get the help he needed and connect with his feelings.

Keep reading to learn how he copes with stigma and the one thing he wishes people understood about PTSD.

Can you tell us a little about yourself? What are you passionate about?  

I was born in Seattle WA, and my family moved to Alaska where I grew up. I joined the Army when I was 19 years old and went to my first assignment at Fort Polk, Louisiana. I spent the next 22 years in the Army. During my time in the Army, I was stationed in seven different locations including Germany. I had five different deployments of varying lengths with three combat, and two peacekeeping. I received a Purple Heart as well as many others in my platoon during my Iraq tour for being wounded under enemy fire. I retired in 2014 and have one daughter who is 11 years old.

I am passionate about music and I play the electric bass guitar for the church that I attend now here in NY. I have played guitar since I was 8 years old and have been playing bass guitar about 12 years. I’m also passionate about family, church community, and raising my daughter.

How has PTSD affected your life? What’s the most challenging aspect of your diagnosis?

PTSD affected my life in a big way in my marriage. It was my then wife who noticed the differences in me and encouraged me to go get help. I finally went after struggling with the symptoms and believing that I didn’t have it and I was strong enough to forget the things I had been through.  Once I knew that I had PTSD and was diagnosed, then I started getting help for even more things that I was struggling with that needed to be addressed.

The most challenging aspect of my diagnosis is being in touch with my feelings. I would tend to block out my feelings and hide them deep inside and put on a false persona because I was scared. I still struggle with this today and have so much support helping me to make it through this.

How do you cope with stigma? 

I believe there should be a law against stigmatizing those of us with PTSD and other mental illnesses. I cope with stigma by not talking about it with those that stigmatize, that don’t understand it, because they already have their views and I don’t like to confront people. I believe the stigma is a real thing and when I see it makes me angry and upset. People are going to do what they are going to do and I just don’t want to discuss issues with them when they won’t understand it. Basically, I use avoidance to deal with stigma.

What’s one thing you wish people understood about PTSD?

I wish people understood that PTSD is not just soldiers whining and complaining about struggles in life. We all have those, but when you have PTSD you are dealing with a 24 hour, 365 days a year illness that is a constant struggle.

What advice can you give others who are struggling with PTSD? What do you find most helpful?

The advice I would give others is to have a support team to help you. Find a psychiatrist, and a psychologist, for those that don’t already have those. Those are the two most important people that will help you through those real hard times when the symptoms are overwhelming.

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France flips the rules on organ donation

Posted February 14th, 2017 by

February 14th isn’t just Valentine’s day, it’s also National Donor Day. Did you know there are currently around 120,000 people waiting for a life-saving organ donation in the United States today? What better time to take a look at some of the measures other countries around the world are taking in order to combat their own long donor waiting lists.

Earlier this year, France made headlines by reversing its policy on organ donations so that all citizens are automatically presumed donors upon their death unless they join an official “opt-out” registry. Before that, unless the deceased person had made it known they did not wish to donate their organs, doctors were required to consult relatives, who in almost 30% of cases refused. The “opt-out” registry has garnered about 150,000 sign-ups so far.

France isn’t the only country to take an “opt-out” stance on organ donation. Countries like Belgium and Austria have also applied similar rules, and perhaps unsurprisingly, they see extremely high organ donation rates that hover around 98% and 99%. The list of registered organ donors in the US sits at around 48% of the population.

So, let’s take a look at some facts from the American Transplant Foundation about organ donation in the United States…

 

What do you think about France’s new law? Share your thoughts below or join the discussion in the forum.

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Meet Lindsay from the PatientsLikeMe Team of Advisors

Posted February 9th, 2017 by

 

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. 

Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.

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

There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!

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

Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.

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

This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.

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

Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.

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

Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!

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

I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.

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

Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.

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

I wanted to help other people like others have helped me on this site.

 

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Keeping it fresh for heart health month

Posted February 7th, 2017 by

Did you know February is Heart Health Month? And although heart disease is the leading cause of death for both men and women in America, it’s also one of the most preventable diseases. In the spirit of heart health month, let’s raise awareness together – make healthy choices day-to-day, get to know your family health history and get regular check-ups to give yourself the best chance of staying healthy, longer.

Here’s something to get you started today – a tasty (and heart healthy) recipe from the American Heart Association.

 

Balsamic Glazed Fish

Ingredients

  • 4-4 oz fillet fish
  • black pepper
  • 3/4 cup balsamic vinegar
  • 1 Tbsp extra virgin olive oil
  • 1 Tbsp lemon juice

 

Directions 

  1. Heat Oven to 450 degrees.
  2. Season fish to taste with pepper. Place on a cookie sheet or in a 9 x 13 inch casserole dish and bake 10-12 minutes.
  3. While the fish cooks combine remaining ingredients and whisk well. Microwave covered on 50% heat for 2 minutes, stirring half-way.
  4. Drizzle glaze over fish and serve.

Know of any other delicious and healthy recipes you can share? Let us know in the comments or join the discussion in the forums.

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Largest Patient Poll on ACA Shows Patients Value Health Care Law More Than the General Population, Are Less Inclined to Want a Repeal

Posted February 7th, 2017 by

Lowering Costs, Coverage for Pre-existing Conditions Remain Top Priorities; If Changes Are Required, Individual Mandate Should Go  

CAMBRIDGE, Mass., February 7, 2017—As Congress and the White House continue to discuss potential changes to the Affordable Care Act (ACA), PatientsLikeMe revealed results from the first large-scale poll to assess patient priorities for the health care law. The poll’s 2,197 respondents are among the estimated 133 million Americans living with chronic conditions.

Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety, said the poll gives voice to those who may be most heavily impacted by changes to the law. “Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.”

Key findings from the poll show that overall, patients have the same concerns as the general population about health care costs, but see benefits in the law that the healthy may have overlooked:

  • More than half (57%) believe the ACA has been helpful to people living with chronic conditions.
  • Nearly half (46%) feel the ACA needs only minor modifications to improve it.
  • Over the last year, their out-of-pocket expenses for health care have either stayed the same (47%) or increased (43%).
  • Lowering costs is a priority for both patients in the PatientsLikeMe poll and for the general population, which took part in a December 2016 Kaiser Health Tracking Poll. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. Lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.
  • Nearly half (46%) of PatientsLikeMe poll respondents felt that a repeal of the 2010 ACA “should not be done,” while one third (31%) of the Kaiser general population felt it “should not be done.”
  • When asked which one component of the ACA they would eliminate if they were forced to choose, PatientsLikeMe respondents were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.
  • When asked which one component of the ACA they would keep if they were forced to choose, PatientsLikeMe respondents were six times more likely to say they would keep mandatory coverage for pre-existing conditions vs. other components of the ACA.
  • The widest differences in opinion related to questions about a repeal of and government involvement in health care law, and were found between the general population, non-condition specific patients, and those who reported major depressive disorder (MDD) as their primary condition:
  • Of those living with MDD, 59% said that the health care law should not be repealed, vs. 45% of the overall PatientsLikeMe respondents and 31% of the Kaiser general population.
  • 42% of respondents living with MDD said decreasing federal government spending on health care should not be done, vs. 29% of the overall patient population and 18% of the Kaiser general population.
  • As for reducing the federal government’s role in health care, 37% of patients living with MDD said it should not be done, compared to 28% of the overall patient population and 20% of the Kaiser general population.

Okun said that patients living with MDD may have a stronger opinion about healthcare law given the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA), a law passed by Congress in 2008 and codified into rules in 2013 to ensure equal treatment coverage for mental illness and addiction. According to the National Alliance on Mental Illness (NAMI), before the law, “mental health treatment was typically covered at far lower levels in health insurance policies than physical illness.”

Full survey results and graphics are available at http://news.patientslikeme.com.

PatientsLikeMe Poll Methodology
Between January 23-27, 2017, PatientsLikeMe fielded a 19-question poll to a sample of its members in the United States who are living with chronic or progressive degenerative conditions. A total of 2,197 patients completed the poll, which asked both original questions and questions from a December 2016 Kaiser Health Tracking Poll to compare patient and general population responses.

Respondents had a range of chronic or progressive medical conditions and listed their primary condition as multiple sclerosis (13%), fibromyalgia (12%), Parkinson’s disease (6%), major depressive disorder (5%), ALS (5%), type 2 diabetes (3%) and multiple myeloma (3%), among many other conditions. The mean age of respondents was 54.5 years (the range was 18- >89). Of 1,840 respondents who gave information on level of education (83.8% of total), 1.0% had less than a high school diploma, 11.0% had high school diplomas, 38.3% had some college, 27.7% reported a college degree, and 22% reported post-graduate education. About one-third (36%) of patients had health insurance through their employer, one-third (35%) had Medicare; and the rest had a mix of other health care coverage including Medicaid, VA, military, and direct pay insurance, which includes insurance purchased from ACA exchange programs. A very small percentage (2.5%) of respondents said they had no health insurance. Nearly all respondents (95%) are registered voters. Their party affiliation is as follows: 37% say they are Democrats, 19% are Republicans; 15% are Independent; 13% preferred not to say; 11% are unaffiliated and 4% are Libertarian.

About PatientsLikeMe
PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With 500,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

 


World Cancer Day – Voices from the community

Posted February 3rd, 2017 by

Over the last year, we’ve shared many stories from the cancer community on the PatientsLikeMe blog. This year, in honor of World Cancer Day, we’d like to highlight some of those stories:

 

Member Iris (Imartinez), shared her story for Ovarian Cancer Awareness Month. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Revisit her story.

 

 

 

 

Member Clare (Riverdale) shared her story – a diagnosis of non small-cell lung cancer while her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. Learn about her journey.

 

 

 

Member David, a member of the 2015-2016 PatientsLikeMe Team of Advisors, opened up about living with Stage IV lung cancer and how he hopes to be an inspiration to other cancer patients. David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.” Check out what he had to say.

 

 

Share your awareness efforts and experience with cancer in the PatientsLikeMe forum.

#WeCanICan, together.

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Top Rheumatoid Blogs of 2016

Posted February 2nd, 2017 by

Today is Rheumatoid Awareness Day and this year we wanted to share some of the top rheumatoid arthritis blogs that were included in Healthline’s 16 Best Rheumatoid Arthritis Blogs of 2016 list:

  1. Itis

Stay up-to-date to learn about RA’s long-term effects and practical tips for living with RA. This blogger’s socks help treat the pain of RA and of Raynaud’s, (an autoimmune blood vessel dysfunction that sometimes co-occurs with RA).

2. All Flared Up

This blog is about “living rather than wallowing” with RA. Check in to see how blogger Amanda is learning to understand her body and how it works with RA.

3. Arthritic Chick

Before Arthritic Chick was finally diagnosed with RA, she suffered with pain in her hands, feet and ribs for years. On her blog, she shares the good days, and her bad days with openness, honesty and strength.

4. An Attitude of Gratitude

Julie Faulds’ easygoing blog gives us a peek into her life with her family, thunder-phobic dog — and, her RA and fibromyalgia. Julie chooses an “attitude of gratitude” and her bad days make her good days better and brighter. Always an advocate of finding the positive, she suggests thinking of your RA downtime as a “spa day” instead of a sick day.

5. Carla’s Corner

Carla Kienast’s RA journey has included knee, hip, and back surgery and her posts cover everything from the latest CDC guidelines, to how her 12 doctors each have just a glimpse of her whole self, through the lens of each of her individual health issues.

Want to see what other blogs made the list? Check out the Top 16.

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