1069 posts by patientslikeme

March is Brain Injury Awareness Month. Let’s learn more, together.

Posted March 21st, 2017 by

Brain injuries can happen to anyone, anywhere at any time. The important thing to know is that you’re not alone, which is the primary theme of Brain Injury Awareness Month organized by the Brain Injury Association of America (BIAA).

At least 2.5 million children and adults sustain traumatic brain injuries (TBI) in the U.S. each year – on PatientsLikeMe alone there are 7000+ living with a traumatic brain injury. Take a look at the diverse community living with TBI on PatientsLikeMe:

 

PatientsLikeMe members have spoken up about living with TBI, how they manage it and their initial thoughts after being diagnosed. Here’s what one member, Vicki, had to say about life after her diagnosis with TBI.

Want to get involved? There are a few different ways you can show your support during Brain Injury Awareness Month – you can share one of BIAA’s six promotional posters, better educate yourself and others about brain injuries with this fact sheet, or join the conversation on BIAA’s Facebook page.

If you’ve been diagnosed with a brain injury, join the more than 7,000 members on PatientsLikeMe who are living with traumatic brain injuries. Ask questions, track your experience and find a place in the community.

 

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“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Posted March 17th, 2017 by

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us.

How are you feeling these days? 

I am feeling great. I’ve had a couple bumps in the road but nothing that the transplant team hasn’t seen before, and [they] handle it immediately. It was scary for me but the team is great in communicating that these [post-transplant] issues happen to some and not to worry. I like that communication because it sets my mind at ease.

How long had you been a candidate for a lung transplant? 

I was evaluated at Brigham and Women’s Hospital (BWH) in January of 2014 and accepted into their transplant program. At the time, I was classified as too healthy to be listed, however I was being watched and met with them every four to six months. In October 2016, BWH suggested I be re-presented and get listed on UNOS (the United Network for Organ Sharing waiting list) for a transplant. After finishing some additional testing, I was listed in Boston Region 1 on December 16, 2016. I also finished the evaluation process at New York Presbyterian Hospital/Columbia around the same time and about December 8, 2016, I was listed on their regional UNOS list for a transplant.

You shared in the forum about having a “dry run” in December 2016, when you were called in as a backup candidate for a transplant but the lungs went to another person. How did you feel when that first call fell through for you? 

As I said in the forum, my daughter and I went to NY Presbyterian with no expectations. While driving, we were calm and I think we both knew this would be a dry run. We didn’t even really call anyone to let them know we were heading there. It gave me comfort to know that the person who needed those lungs the most got them. Many times the lungs are not usable and these are now breathing in someone’s body, giving him or her the gift of life.

What was it like to get “THE CALL” again, leading up to your actual transplant? 

January 6 was a difficult day for me emotionally. We terminal patients have those days, accept them, then put on a happy face for our loved ones. My daughter made supper (not a usual thing – haha) and we were just about ready to sit down to eat. It was 5:30 p.m. My phone rang and without looking at it, we knew. My daughter got up and went upstairs to get ready as I was answering the phone.

I was a primary [candidate] for a left lung, and we knew in our hearts this was it. We headed to Boston immediately. I headed into surgery at 11 a.m. on January 7, 2017. While I was in surgery, my daughter received a call from NY Presbyterian saying they had a lung for me. That rarely happens, if ever. My journey was meant to begin on January 7 at BWH. That was the day there was a 25-car pile-up on the way to New York. I would have never made it in time [for the transplant there].

Can you share some more of your transplant surgery experience with us?

I know that when I woke up after surgery I did not have any pain – I still have not had any pain. They put me on .5 liter of oxygen after, and when I woke in ICU, I took it off. I was breathing on my own from the beginning. My surgery finished at 5 p.m. (ish) on January 7. I did everything they told me to and was released to go home on January 13. Six days after a left lung transplant. This was meant to be.

 

What has been the most difficult or surprising part of your recovery? 

I had a couple of bumps in the road but those were nothing. I need to stress that the most difficult part is the emotions for me and for my caregiver. We don’t stress the caregiver enough. As my daughter said, the prednisone has turned her 66-year-old mother into an adolescent child at times. That is difficult for any caregiver to handle. It’s a 24-hour job for them. We just need to recover, but we can’t do it without them. I’m blessed to have her and she says we will get through this because the alternative is not an option.

You’ve referred to transplant day as “Miracle Day.” What would you say to your organ donor? And to people considering organ donation? 

I wake in the morning and thank my donor and the donor family every day for this gift. I never thought about organ donation much until a friend of mine needed a kidney and then I needed a lung. Doctors perform miracles every day not only by transplanting an organ but using the right combination of drugs to keep our body from rejecting it. Giving the gift of life to someone else is the most selfless act someone can make, and those of us who need it will forever be grateful. I plan to honor that donor by doing my part in staying alive.

How will you use PatientsLikeMe now that you’ve had a lung transplant? 

I’ve been pretty vocal [asking] about the post-transplant experience when a few of the PatientsLikeMe folks had their transplant. It’s the only piece that we don’t seem to share. I get it – I’m about two months post-transplant and I’m trying to recover. I plan to keep giving back. I will begin posting/blogging again about my experience so others also will know that whatever is happening post-transplant, some others have the same issues. Sharing our experiences and our data is important, and it makes us feel less alone. People like John_R, who I talk to – he says he has had the same experience or experienced something else. It helps those of us who follow to get through it.

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The record on research: Catching up with TOA member Cris

Posted March 15th, 2017 by

Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials is so important.

Despite her shy personality, Cris got involved with patient advocacy with the encouragement of her ALS specialist, Dr. Richard Bedlack. Determined to overcome her shyness, Cris found motivation and purpose in advocating for future patients, family and friends and the belief that access to all trials should be easily available for a patient and not complicated to locate. In May, she attended the ALS Advocacy Day in Washington D.C., where she represented pALS from North Carolina and shared her own ALS journey with her state’s senators.

Cris believes that clinical trials are critical for survival, present and future, but physicians don’t know about, or take the time to discuss current trials with patients unless their facility is active in research. There are very few active ALS clinical trials and because of stringent trial protocols, many patients are not accepted due to progression of the disease. She believes that since ALS is fatal, drug companies are worried patients might succumb before end of trial.

Since her diagnosis in 2014, Cris has participated in several clinical trials:

  • Started a new trial but ultimately failed in the qualification process.
  • Started a “blind” (placebo vs drug dosage) – but couldn’t tolerate the side effects of the drug dosage and was advised not to continue.
  • Participated in a monitored daily physical activity study.
  • Currently enrolled in the year-long Lunasin Virtual Trial (completing at the end of March 2017). This trial is in partnership with Duke and PatientsLikeMe and all monthly input and results can be viewed by PatientsLikeMe patients.
  • Currently participating in a 6-month study through the Precision Medicine Program (ALSTDI), to compare movement data collected using accelerometers and overlay those data with an individual’s self-reported ALSFRS-R scores. Involves keeping track of progression with activity monitors for six days.

What is the goal of the Duke Lunasin Virtual Trial?

  • The primary hypothesis is that a supplement regimen containing Lunasin can decrease the rate of ALSFRS-S progression by 50% relative to matched historic controls.
  • While it might not be the most delicious drink, Cris makes it work by mixing the Lunasin with juices or smoothies. Cris, like many of her fellow pALS, is willing to go to any length for a treatment or cure.
  • Want to know more about the Duke trial? Check out what Dr. Bedlack had to say.

New to the ALS community? Cris has some words of advice:

Know that it’s okay and expected, when first diagnosed with this disease, to have the wide spectrum of emotions from sadness, madness, confusion, “why me” and fear (to name a few). I highly recommend putting aside all the negativity that goes with this journey as quickly as possible. Regroup, focus and be creative on establishing a new way of life to cope with various stages of disability. Contact your local ALS chapter, national or worldwide or other pALS – they’re great resources.”

On PatientsLikeMe:

Cris shared about Lunasin and being a part of the Duke trial. With 151 PatientsLikeMe members reporting that they’ve used Lunasin to treat their ALS, 140 treatment evaluations and almost 45,000 forum posts, Lunasin is a popular topic in the ALS community.

Want to learn more? Head to the forum to check what people are saying about Lunasin.

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Sleep and Daylight Saving: 3 ways to spring forward with confidence

Posted March 10th, 2017 by

Daylight Savings adjustment

Daylight Saving Time is here again. This Sunday, March 12th, clocks will move forward one hour from 2:00am to 3:00am. While the hour change may seem small, it can have a big impact on sleep and health.

Want to hit snooze? You might feel sleepier than usual Monday morning since the average person sleeps 40 minutes less the night following spring Daylight Saving Time than usual. From taking medication at the same time every day to finding the energy for an afternoon walk, many people rely on daily routines to manage their condition. For some, losing an hour of sleep can throw off more than just a sleep cycle.

Here are a few tips from the National Sleep Foundation to prepare yourself so you can stay on track and spring forward with confidence:

  1. Make sure you’re caught up on sleep. If you’re already sleep-deprived when Daylight Saving Time comes, it’s going to hit you harder than if you’ve been regularly getting seven to nine hours a night. So, in the week leading up to the time change, pay special attention to clocking the right amount of shut eye.
  2. Use light to your advantage. Light affects your sleep cycle. So, whenever possible, head outside early in the mornings and soak in some sunlight. At night, make sure you dim your lights when you want to signal to your body that it’s time to go to sleep and avoid staring at computer screens late in the day.
  3. Rethink your evening activities. Tweaks to your nighttime routine can help you drift off more easily—something that’s tough to do when you spring forward. A few important ones: Limit caffeine and alcohol intake in the hours leading up to bedtime and don’t schedule a nighttime workout.

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The record on research: A chat with Duke’s Dr. Rick Bedlack

Posted March 7th, 2017 by

“This is the fastest enrolling trial in ALS history.”

 

A brightly-colored blazer and the determination to make a difference for ALS patients are two of Dr. Rick Bedlack’s defining characteristics. Dr. Bedlack is a tenured associate professor of Medicine/Neurology at Duke University. He’s also the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study. We recently spoke with him about his background with ALS and the ins and outs of the study.

He saw his first patient with ALS in the late 1990s during his residency at Duke.  He says, “I remember being amazed by the person’s history and neurological exam findings, intrigued by the mysteries of why this was happening, and horrified when I heard my attending physician say ‘you have 2-3 years. There is nothing we can do. Go and get your affairs in order.’” Driving home that day, he decided to build a program for people with ALS that would give them options for living the best possible life with the disease and for participating in research that would stimulate some hope.

Fast forward to March of 2016 when the Lunasin study started. What’s Lunasin and why does it matter to the ALS community? Lunasin is a peptide first extracted from soybeans, which has several potential mechanisms by which it could help a person with ALS. “I first heard about it in a video that my ALSUntangled team was asked to review. In this, a man named Mike McDuff reported that he had ALS, started taking a Lunasin-containing supplement regimen, and unexpectedly experienced dramatic improvements in his speech and swallowing,” says Rick.

He found Mike McDuff and validated his ALS reversal. “One possible explanation for his ALS reversal is that the Lunasin regimen really works,” he says. “Other possible explanations are that Mr. McDuff has an undiagnosed ALS-mimic syndrome, or that his body is somehow naturally ‘resistant’ to this disease. I am testing all these hypotheses in my ALS Reversals program.”

The Lunasin study is a clinical trial of the exact same Lunasin-containing regimen that Mike McDuff took when he experienced his ALS reversal. Because they’re looking for the largest signal ever in an ALS trial, they’ve been able to incorporate some unusual design features into this trial:

  • The inclusion criteria are very broad. There are no cutoffs related to disease duration or breathing function.
  • There are no placebos. All 50 people in the trial will get the real treatments.
  • There are very few in-person visits. Most of the visits are virtual, with participants logging into PatientsLikeMe to enter measurements we teach them to make.
  • The results of the study are available in real time. Anyone can go onto PatientsLikeMe and type in “Lunasin Duke Virtual Trial” and see what participants are saying is happening to them.

“I appreciate the frustration many people with ALS have expressed about the way most of our trials are designed and I wanted to do something different to help them,” says Dr. Bedlack. “It took longer than I expected to get the study open. Constipation is much more common on the Lunasin regimen than I expected, and drop outs have been higher than I hoped thus far.”

The IRB-approved protocol is published so that anyone who wants to try the Lunasin regimen outside the trial can do so using the exact same products and doses, and even record their same outcome measures on PatientsLikeMe.

So, what’s the end game of this study? Dr. Bedlack comments, “I hope to find a way to reverse ALS or at least slow it down. If that does not happen, then I hope I can at least show that this unusual design enrolls more quickly and retains study participants better than a more traditional ALS trial. This is the fastest enrolling trial in ALS history.”

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Going the distance for MS awareness

Posted March 6th, 2017 by

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition.

You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and flexible enough for running. It is not necessarily made for marathons, per se, but I make it work despite the cuts and bruises. I guess that is a long way of saying that running has made me stronger.

Aside from your custom carbon fiber ankle foot orthotic, what other things do you do to help with your running?

I cross train to help with cardio-vascular fitness. My husband and I ride 20-30 miles along Pacific Coast Hwy very early in the morning (traffic scares me, especially being clipped into the pedals).

I also lift weights. My right thigh is very weak from MS and I can only lift it 3-4 inches off the ground. I do a lot of compensating with my left side when I run. I try to strengthen all of my muscles to try to keep them in balance, but I do have atrophy in my right leg.

In general, what advice would you give for someone living with MS who wants to work towards becoming more physically active?

First, I have to throw in the caveat to talk to your doctor first! Next I suggest setting small, attainable goals. For example, if you don’t exercise at all, make a goal to walk 10-15 minutes, then start increasing by 5-10 minute increments when you feel confident.

My very first running race was a marathon (because I’m crazy). That was a big goal and I attained it, but I suffered a lot at the beginning. My first training run was down my block and I walked back home crying. My husband likes to tell everyone that story! But I kept at it and in 6 months I went from one block to 26.2 miles. It was a slow marathon, but I did it! However, I should have signed up for shorter races first to keep my morale high.

Small attainable goals and small concerted efforts to make change!

Right now you’re in the middle of a big idea you had to raise money for the MS Society. You committed to running 7 marathons on 7 continents in the span of a year. You’ve already run in Cape Town, South Africa; Buenos Aires, Argentina; Honolulu, Hawaii; King George Island, Antarctica; and Tokyo, Japan. Next up are Vienna, Austria, and Christchurch, New Zealand. What’s been your favorite experience so far? What’s been a challenge?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

I’ve had a lot of great experiences. My favorite marathon so far is Cape Town. The scenery was beautiful, the people were very friendly and even though it is a large international marathon, it felt like a tight knit community. The highlight of the trip for me was connecting with the Multiple Sclerosis South Africa group. They were absolutely lovely and even though our trip was short, we bonded. Meeting people and making friends are my favorite things about my trips. People really make it more special.

The White Continent Marathon was by far the biggest challenge. I was prepared for the cold, but I underestimated the terrain. It was very rocky (from pebbles to boulders) and it was so painful on my feet. I had to walk a lot of it because my right foot kept sliding. I can feel my left foot and use my toes to balance myself. However, my right foot is numb and I cannot move my toes well. That, coupled with a rigid footplate on my AFO, made it hard to keep steady on the undulating terrain. I was sore in places that I didn’t know had muscle!

We’ll be following up with Cheryl once she finishes her final two races in Vienna, Austria, and Christchurch, New Zealand. You can keep track of her progress on her blog!

On PatientsLikeMe

Cheryl talks about having drop foot, something reported by 990 members on PatientsLikeMe. She’s had success using an ankle foot orthotic (AFO) to treat it. Here’s what members have to say:

In fact, members have a lot more to say about this – 101, 941 forum posts worth, to be exact. See what they’re saying and learn more about who’s experiencing drop foot!

What are you doing to raise awareness about MS this month?

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Lady Gaga reveals her struggle with PTSD

Posted March 3rd, 2017 by
Lady Gaga PTSD

LADY GAGA / TWITTER

Musician Lady Gaga recently revealed in an open letter that she is living with PTSD. In the letter, posted to the Born This Way Foundation website, she discussed her struggle with the condition since being sexually assaulted as a teenager: “I have wrestled for some time about when, how and if I should reveal my diagnosis of Post Traumatic Stress Disorder (PTSD). After five years of searching for the answers to my chronic pain and the change I have felt in my brain, I am finally well enough to tell you.”

In the letter, Gaga touched on living with and managing the symptoms of the condition, and that she experiences something called dissociation, which can present itself in a range of experiences – she opened up about how it impacted her: “…my mind doesn’t want to relive the pain so ‘I look off and I stare’ in a glazed over state… My body is in one place and my mind in another. It’s like the panic accelerator in my mind gets stuck and I am paralyzed with fear,” she wrote. “When this happens I can’t talk. When this happens repeatedly, it makes me have a common PTSD reaction which is that I feel depressed and unable to function like I used to.” Gaga also revealed she tends to experience somatization, which means she experiences physical pain related to her mental state.

Along with fighting against the stigma associated with mental illness, Lady Gaga also hopes to raise awareness for all people living with PTSD, including those outside of the military: “Traditionally, many associate PTSD as a condition faced by brave men and women that serve countries all over the world,” she wrote. “While this is true, I seek to raise awareness that this mental illness affects all kinds of people, including our youth. I pledge not only to help our youth not feel ashamed of their own conditions, but also to lend support to those servicemen and women who suffer from PTSD. No one’s invisible pain should go unnoticed.”

The news made headlines globally and the musician pledged to continue to share her experiences and manage the condition as best she can. “I will never give up on my dreams of art and music. I am continuing to learn how to transcend this because I know I can. If you relate to what I am sharing, please know that you can too.”

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Loud and clear: The patient voice on the ACA

Posted March 2nd, 2017 by

Have you had chance to check out that poll where 2,000+ PatientsLikeMe members shared their views on the Affordable Care Act (“Obamacare”)? It was the largest patient poll on potential changes to the health care law, and several media outlets are now listening up.

A recent CNBC article called “The human side of the Obamacare debate” featured quotes from those who took part in the poll. Here’s a glimpse of the patient perspective:

“Raising the age of dependent coverage to age 26 was a lifesaver for our daughter. ACA is not perfect as there are stories of those who’ve hated it and it cost them more money in the long run, but there are just as many positive stories of all the people the ACA helped. Health care in this country is big business and complicated. The ACA didn’t uncomplicate it, but it helped many more Americans have affordable health insurance. It is a mistake to just repeal it without anything to take its place.”

  • Jeanne of Jackson, WI, living with fibromyalgia, depression, generalized anxiety disorder and primary biliary cirrhosis

 

ACA patient poll by PatientsLikeMe

2,197 PatientsLikeMe members weighed in on the ACA.

 

“I lost my health insurance because my husband was laid off. Then, I had Medicaid for five months, but that was taken away because my husband made ‘too much’ on unemployment which wasn’t much. This doesn’t take into account our other bills like keeping a roof over our heads. I am in the middle of a disability case. I can’t afford insurance. If I start having seizures again from my [traumatic brain injury] or other issues, I am screwed financially. I don’t have any savings; I can’t work. I am borrowing money from credit cards just to make ends meet.

And to insist that I have insurance (the lowest quote I received was $270 per month) with no financial way of paying and getting fined because of that is an insult. I have been paying into a system that is supposed to help when I need it, but no. This has hurt me and so many others.”

  • Shawn, Lakewood, CO, living with severe traumatic brain injury

Thanks again to all who participated and helped elevate the patient point of view. Let’s keep the dialogue going, together.

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Member Kimberly opens up about living with a rare disease

Posted February 28th, 2017 by

Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that herd of horses.”

Kimberly touches on the impact of living with a rare disease, and also what she had to go through to get a diagnosis for her condition. Watch her video to hear what she has to say…

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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

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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