The Value of Openness: The PatientsLikeMe Blog

PatientsLikeMe member MLR was an avid BMX (Bicycle Motocross), MTB (Mountain Bike Racing) and Motocross athlete his entire life – until he was diagnosed with multiple sclerosis (MS) last year. After having to give up the sport he loved, MLR began to suffer from depression. Today, however, he’s happy to report that he’s racing again thanks to an amazing turn of events. Check out his incredibly moving story below.

1.  How did you and your family react to your MS diagnosis?

It was very tough when we found out it was MS that was causing all these problems and keeping me from training and racing. My family traveled with me always, and it was like going on vacations every month. We were a racing family.

2.  How have you adjusted to living with MS – and what tips do you have for newly diagnosed MS patients who identify as athletes?

The hardest part for me was accepting the fact that I was not going to be able to race and do most of the things I had done for so many years. But my family didn’t give up on me like I did. They pushed me through the depression, and my faith in God carried me through my deepest valleys and set me on the mountain tops to see what my life could still be. As athletes, we just have to keep that drive. We have to compete and make adjustments and keep competing. Compete against the odds and against MS itself.

3.  You have a new gravity downhill wheelchair that you’re racing now.  How did that come about, and what’s it like to race in one?

My new gravity wheelchair is a blast! It was built by Active Force Foundation, with four wheel independent suspension (6.5″ of travel), four wheel disc brakes and all built out of aluminum. It is so fun to ride and race.

The greatest thing about this chair is how I received it. My two daughters started talking to people in our sport of BMX about my disease and how it had really taken its toll on me and how depressed I was that I couldn’t ride a bicycle any more. So over about a year to a year and a half, the whole BMX sport joined with them and raised the $11,000 to buy me this 4Cross DH chair. When they presented me with the concept of getting this chair, I was overwhelmed at the love and support from not only my two awesome daughters but also from my fellow racers and BMX family. The family of BMX is worldwide. Needless to say I cried like a baby for the support and love I felt from these wonderful people.

I ride my awesome DH chair every chance I get.  Although they aren’t very many races for these chairs, I have so much fun showing up to race events and showing the chair off and letting people sit in it and sometime letting people get pushed around a parking lot in it. So if you ever get a chance to go see some BMX racing or you know someone in BMX, know that it is a great sport and the people are a loving and caring group. By the way, BMX is an Olympic sport, and you can see it again in the 2012 London Olympic Games!

Have your health conditions ever caused you to lose a job? Or prevented you from applying – or getting hired – in the first place?

October is National Disability Employment Awareness Month, an event that aims to recognize the skills that those with disabilities bring to the workforce and promote employment opportunities and access for those with disabilities. The issue, of course, is that discrimination, employment barriers and higher rates of unemployment remain ongoing concerns for Americans with disabilities.

Here’s what the White House’s Presidential Proclamation has to say about these troubling statistics:

“More than 20 years after the signing of the Americans with Disabilities Act (ADA), individuals with disabilities, including injured veterans, are making immeasurable contributions to workplaces across our country.  Unfortunately, the unemployment rate for people with disabilities remains too high — nearly double the rate of people without disabilities — and reversing this trend is crucial.” - President Barack Obama

Last week, we featured a post about wheelchair barriers and hazards and asked readers to appraise their neighborhood for wheelchair accessibility. Today, we ask you to think about the barriers to employment that might exist for people with disabilities – both physical and mental – in your workplace. Would you say your work is “supportive” and “inclusive,” as the Presidential Proclamation states is the goal?

Whether you’ve faced job discrimination or noticed a potential barrier at work, we encourage you to share your stories in the comments section.

Mobile.  Active.  Independent.  How close are you or the patient in your life to those attributes?

October is National Physical Therapy Month, which is designed the highlight the role of physical therapy (PT) in restoring and improving motion.  According to the American Physical Therapy Association (APTA), the benefits can include enhanced quality of life as well as avoiding surgery or the long-term use of prescription medications.

The theme for this year’s event is Sports Injury Prevention Across a Lifespan.  ”Participating in sports the right way is the key to avoiding injuries that can sideline you for a significant amount of time,” writes the APTA.  Learn more about preventing sports injuries and the role of PT at www.MoveForwardPT.com.

Here at PatientsLikeMe, 700 patients report using PT as part of their treatment regimen, and nearly 300 of them have submitted treatment evaluations of their experience.  The most common reported dosage is “weekly,” and the most common reported reason for having PT is stiffness/spasticity.

What do these patients have to say?  Here’s a sampling of their feedback:

• “I had not realized how badly I walked and moved until my PT evaluation and treatment. PT has helped me regain muscle movement and has helped the leg/foot pain go away.” - Patient with Parkinson’s disease

• “If it tires you, stop. Do only light, non-resistant exercise. If it tires your muscles or causes pain, tell them immediately. Pain is not gain, it is loss of function.” - Patient with primary lateral sclerosis (PLS)

• “PT actually does help in building up weakened muscles, especially in my legs. I am very sore after I leave, though. It works itself out after an hour or so at home.” - Patient with fibromyalgia

• “I am walking better with and without the walker.  I work out for an hour and fifteen minutes a day now. Monday, Wednesday and Friday with therapist, and the other four days alone.  I WILL WALK ALONE AGAIN.” - Patient with MS

Have you tried PT? Share your experiences at PatientsLikeMe today.

In August, we recognized Psoriasis Awareness Month on our blog and shared some facts and figures about this autoimmune disease, which affects 7.5 million Americans. One of the statistics we shared is that psoriasis often occurs in conjunction with other serious health conditions, including diabetes, hypertension, heart attack and obesity.

What these conditions share is that they can often be improved by reaching an ideal body weight. But losing weight – and maintaining it – is easier said than done. That’s why the National Psoriasis Foundation has launched the Healthy for Good campaign. Here’s what Catie Coman, Director of Communications at the National Psoriasis Foundation, tells us about this new online program.

1. What is Healthy for Good, and why should patients join in?

Healthy for Good (www.healthyforgood.org) is program designed to help people lose weight, while raising funds for a cure for psoriasis and psoriatic arthritis. It’s unique in that is uses a public platform and the fundraising tactic of “friends asking friends” to help people reach their goals.

Forty percent of people with psoriasis have metabolic syndrome, a cluster of conditions such as high blood pressure, diabetes and abdominal obesity. By joining Healthy for Good, they’ll get tools to stay motivated, lose weight and reduce their risk factors for these associated conditions. They’ll also be able to support research to find a cure for psoriatic diseases.

2. How will Healthy for Good reduce the risk factors for these conditions?

Healthy for Good may reduce the risk factors for these other serious conditions by providing participants with a platform to lose weight safely and set achievable goals. Healthy for Good supports a weight loss goal of up to two pounds per week. Participants will make a commitment to eat right and exercise—and reduce their risk for other serious diseases while they get healthy.

3. How is this program different from other health and fitness campaigns?

First, it gives people a chance to go public. Research shows that people are far more likely to achieve a goal when they put their reputation on the line—by publicly announcing their intentions. Healthy for Good helps people be accountable by giving them a platform to broadcast their commitment.

Also, it will help people stick to their resolution by asking others to support their efforts. For every pound that someone commits to lose, they will ask loved ones to donate $1, $5, $10 or more to help the National Psoriasis Foundation find a cure for psoriasis and psoriatic arthritis.

Participants will track their progress each week, and the Healthy for Good tracker will calculate their overall progress toward their goal. In order to help people stay motivated, each person who meets their weight-loss and fundraising goals will be entered to win prizes.

4.  Is Healthy for Good only available to psoriasis patients or can anyone join?

Anyone can join Healthy for Good. People without psoriasis and psoriatic arthritis can use this program to overcome weight loss obstacles and lose the pounds, while helping others at the same time. And it’s a great way for people with psoriasis and psoriatic arthritis to get healthy, reduce their risk of other serious associated diseases and raise funds to find a cure.

On Tuesday, we recognized Mental Illness Awareness Week (October 2-8) by sharing some of our mental health members’ vivid descriptions of what depression feels like. Today, we’ve taken a look at what else our members are sharing – or not sharing – about more than a dozen mental health conditions at PatientsLikeMe.

On the site, more than 80% of our active mental health members (meaning, those who have logged in during the last 60 days, n=1,589) are capturing the various factors affecting their mood and sharing those experiences with patients like them. 1,339 have posted an InstantMe update (shown above) to record their moment-to-moment status, and 843 have completed a weekly Mood Map survey.

But what about sharing in the real world – outside of PatientsLikeMe? In a poll we conducted earlier this year, we discovered that patients with a mental health condition are, along with HIV patients, the least likely to share their diagnosis with others. For instance, overall results suggest that when it comes to immediate family, 81% of respondents say “all of them” know about the diagnosis.  However, in HIV, this figure is only 50%, and in mental health conditions, it’s 56%.

Interestingly, however, our poll also found that PatientsLikeMe members have shared their diagnosis with more people as a result of using the website. For mental health conditions (formerly called mood conditions at PatientsLikeMe), 28% of respondents said they had told more people about their condition as a result of PatientsLikeMe, as the graphic above illustrates. Here’s how one mental health member explains it:

“Although I have not created a large number of [forum] posts on PatientsLikeMe, just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life.  PatientsLikeMe allowed me to explore others’ perceptions of their experiences. Knowing I ‘belonged’ here, and was understood here was valuable in my recovery.  So being comfortable here, at PatientsLikeMe, made me feel more comfortable discussing my diagnosis away from PatientsLikeMe.”

This, of course, speaks to the stigma surrounding mental illness, which is something Mental Illness Awareness Week aims to change. (The 2011 theme is “Changing Attitudes, Changing Lives.”) At PatientsLikeMe, we think change comes from getting to know real patients living with real mental health conditions. As one person commented on our Facebook page, “I always see people making fun of ‘crazy’ people, frivolous jokes including depression and bipolar, and movies that skew the severity, understanding and seriousness of these disorders.”

Can sharing your mental health experiences help erase the stigmas and stereotypes? The Academy Award-winning actress Glenn Close, whose sister has bipolar disorder, certainly believes so, as she writes in a great article entitled “The Stigma of Silence.” She argues that talking openly about mental illness with “more candor, more unashamed conversation” can “deconstruct and eliminate stigma.” We believe so too, but we’d love to hear your thoughts in the comments section.

Since 1990, the first week of October has been recognized as National Mental Illness Awareness Week by the U.S. Congress. Under the leadership of the National Alliance on Mental Illness (NAMI), mental health advocates across the country are joining together this week to sponsor numerous awareness-raising activities based on the theme of “Changing Attitudes, Changing Lives.”

Here at PatientsLikeMe, we have thousands of patients sharing their experiences with more than a dozen mental health conditions, including 7,699 patients who report major depressive disorder and 1,638 patients who report postpartum depression. What do they have to say? Below is a “word cloud” of some of the most commonly used phrases on our mental health forum. The most popular single word, by the way, is “meds.”

This graphic (which you can click to enlarge) gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health.  But the best way to increase awareness and knowledge, we believe, is to learn from real patients.  According to NAMI, one in four adults experiences a mental health problem in any given year, while one in 17 lives with a serious, chronic mental illness.

To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

• “My last depressive state felt like I was in a well with no way to get out.  I would be near the top, but oops….down I go.  I truly felt that I would not be able to pull myself out of this one.   I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”

• “It feels like living in a glass box.  You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it.  You are totally alone although surrounded by people.”

• “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success.  At the beginning you feel like there has to be an end or a door of some sort - something to get you out, but as you keep walking, your hopes damper by each step.  You try yelling for help, but no one hears you.”

• “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning.  I can’t run.  I can’t walk or crawl.  In fact, I have no options.   I have no memory of how I came to be there.  I know I’m going to die, I don’t know when or exactly how.  There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear.  My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions?  If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.  Also, stay tuned for another blog later this week about the types of data being shared by our mental health members.

September is National Cholesterol Education Month, which means it’s a good time to find out your total cholesterol levels as well as your HDL (“good” cholesterol) and LDL (“bad” cholesterol) levels. Have you had them checked in the last five years?

More than 102 million Americans have a total cholesterol level at or above 200 mg/dL, which is beyond healthy levels, and more than 35 million of those individuals have levels of 240 mg/dL or higher, which puts them at high risk of heart disease. That’s a major concern given that heart disease is the leading cause of death in the United States.

Fortunately, high cholesterol can be lowered with lifestyle changes – including losing weight, eating healthier, exercising and quitting smoking – as well as medication. But to start turning things around, you have to know there’s a problem. Even children and adolescents can have high cholesterol, especially if they are overweight.

Here at PatientsLikeMe, 335 patients report hypercholesterolemia (high cholesterol) while 235 patients report hyperlipidemia (high lipids in the blood, including cholesterol and triglycerides.) Across both conditions, some of the top reported medications include Simvastatin, Atorvastatin, Pravastatin and Rosovastatin.

If you’re unsure of your cholesterol levels, talk to your doctor at your next visit. And if you’re already aware that your levels are high, reach out to other patients like you today at PatientsLikeMe. Changing your lifestyle isn’t easy, but it’s easier when you have a community to lean on for support, answers and advice.

We’ve shared a lot of great photos on the blog lately of run/walk teams sponsored by PatientsLikeMeInMotion this year. Now you can learn more about this dynamic program in a more dynamic format with our new PatientsLikeInMotion video. Find out how to get involved, what sponsorship entails and how much PatientsLikeMe has donated towards our sponsored teams’ fundraising efforts since the program’s inception.

Ready to get out there and raise awareness and funds for your condition? Let us support you every step of the way. Sign up for PatientsLikeMeInMotion today.

Today, September 21^st, is World Alzheimer’s Day. For this annual event, Alzheimer’s associations around the globe are coming together to raise awareness about Alzheimer’s disease, which affects an estimated 36 million people worldwide. This degenerative brain syndrome impacts memory, thinking, behavior and emotion. Eventually, those affected require assistance with all aspects of daily life.

The theme of this year’s event is “Faces of Dementia,” and it is designed to show how this incurable disease knows no social, economic, ethnic or geographic boundaries. In addition, it pays tribute to those who work tirelessly to support and care for people with dementia. The need for such care will only increase as the world’s population ages. By 2050, the global prevalence of Alzheimer’s is expected to triple (115 million).

Here at PatientsLikeMe, we have both patients (or caregivers of patients) who have reported Alzheimer’s disease, as well as Early Onset Dementia, which is the term used when Alzheimer’s is diagnosed before the age of 65. If someone you love has exhibited signs of dementia – including memory loss, word-fishing, personality changes and difficulty performing routine tasks – talk to a healthcare professional as soon as possible.

Never done a downward dog? Now is your chance.

September is National Yoga Awareness Month, a grassroots campaign to inspire a healthy lifestyle. As part of this national observance, those who have never experienced yoga can try it for free for a week at more than 1,600+ participating studios. Also, beginners and veterans alike are invited to come together for “The Time for Yoga,” a worldwide yoga session held on the last day of the month – Friday, September 30th – at 7:00 p.m. local time.

Here at PatientsLikeMe, more than 530 patients report practicing yoga for reasons such as general health, spasticity/stiffness, fibromyalgia and improved flexibility. The most common “dosage” is 30 minutes daily.

What do these patients have to say about yoga? Here is a sampling of the reviews and tips found on the more than 120 treatment evaluations submitted about yoga.

• “Yoga is so good for so many reasons! It helps me stretch my stiff body, strengthen core muscles, and gives me calm and purpose for the day. I always tell myself I should do some yoga every day! Unfortunately, I find having a class and good teacher is really the motivation I need to stick with it.” – Patient with MS

• “Yoga comes with many other benefits, such as learning to get in touch with your body, listen to your body, and treat your body with the compassion that it deserves. In the process, you also learn to treat your whole self with compassion. Since being chronically ill involves a lot of surrender to discomforts that are way out of our control, it is good to have a way to remind yourself that you are sacred and that you are not your pain and fatigue, but something bigger.” – Patient with fibromyalgia

• “Give it a try for three months, most everyone I know comes and sticks with it. I was one of the only males in the class to begin with but now about eight guys rotate in and out. Love yoga. The teacher said the para sympathetic something is activated with yoga, and Tai Chi does it as well; other exercise does not. Give it a try, it helps me.” – Patient with Parkinson’s disease

• “It was a huge step for me to start taking yoga as I have found it increasingly difficult to be around people, but I went for myself and found that it really helped me to just delve into my own space. Hatha yoga is very pleasant because it is enough of an exercise that you notice the health benefits, but it is not so strenuous as to create long lasting physical discomfort. The unexpected benefit is the increase in self control that I am finding, and I haven’t had any lingering thoughts of suicide since starting it.” - Patient with major depressive disorder

If you’re considering yoga, learn more about what it entails – and what potential benefits it has – on Yoga Month’s “New to Yoga” page.

“We founded PatientsLikeMe on the concept that sharing health data could lead to a more empowered patient and better overall healthcare system. It’s an exciting and giant step forward for us as an industry as we unite around making health data more accessible to those that matter most – the patients.”

– Ben Heywood, PatientsLikeMe Co-Founder, President

Today the first-ever Consumer Health IT Summit is taking place in Washington, DC. Sponsored by a division of the US Department of Health and Human Services (HHS), this new initiative is designed to empower individuals to be more engaged in their health through the use of health information technology (IT).

During the summit, both government health agencies and private sector organizations like PatientsLikeMe will be highlighting the ways they plan to support your access to electronic health data. For example, HHS Secretary Kathleen Sebelius unveiled new proposed rules that would expand the rights of patients to access their health information as well as a model privacy notice template that can be used in the process. In addition, HealthIT.gov, a new resource for consumer health empowerment, was announced.

PatientsLikeMe is participating in this important initiative by making our own pledge to you, which we are committed to completing by spring 2012.

“We pledge to make it easier for individuals and their caregivers to have timely access to their health information in a convenient, useable format through our website.  As we continue to encourage and enable them to use this information to improve their health and their care, we pledge to:

1) improve patients’ accessibility to their personal health information by making our Doctor Visit Sheet (a document detailing an individual’s health data and experience) downloadable through multiple formats, including electronically readable formats like PDFs and the “Blue Button” ASCII text standard format;

2) encourage patients to dialogue with their peers and providers about the benefits of accessing and understanding their health data;

3) continue “Putting Patients First” by building a website that helps them to share, access and learn from their health information online.”

What’s a Blue Button, you ask? An open government initiative, Blue Button represents a collaboration between the Veteran’s Administration and HHS to develop an online feature that would enable Veterans and Medicare beneficiaries to easily read, use and share their personal health information with providers and others they trust. The ASCII text file format was selected for its ease of use by individuals, while allowing computers to easily “read” the information.

Every September, the Substance Abuse & Mental Health Services Administration (SAMHSA) observes Recovery Month.  The goal is to promote the societal benefits of treatment for substance use and mental disorders, celebrate people in recovery, recognize treatment providers and spread the message that recovery is possible.  As the SAMHSA slogan says, “Prevention works, treatment is effective and people recover.”

Recovery Month also inspires millions of people to raise awareness about addiction, share their stories of recovery and assist others who are still struggling. As one person writes, “Since I have attained recovery, I have accomplished all of my dreams - something I never would have imagined 26 years ago, when my dependence to alcohol and narcotics had created a hopeless life.”

Do you have a recovery story of your own?  Add your voice to this month-long celebration.  Or if you’re still struggling – or know someone who is – you may want to consider downloading SAMHSA’s free mobile app for iPhones/iPads/iPods. It’s a Treatment Locator that helps connect people with the services they need, whether it’s for mental health services or substance abuse.

Here at PatientsLikeMe, thousands of patients are sharing experiences, support and data regarding their mental health conditions and addictions.  For example:

• 7,619 patients report generalized anxiety disorder (GAD)
• 3,894 patients report tobacco addiction
• 3,027 patients report obsessive compulsive disorder (OCD)
• 2,046 patients report alcohol addiction
• 1,917 patients report drug addiction
• 1,416 patients report bipolar II disorder

If you are affected by a mental health condition or addiction – either as a patient or a caregiver – we encourage you to join our growing community. Learn about the path to recovery for others and connect with those who can relate.

Last week, we told you about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival and how you could participate. But for those of you who don’t have psoriasis and don’t know much about it, we wanted to tell you a little more about this chronic condition as August is Psoriasis Awareness Month.

An autoimmune disease affecting as many as 7.5 million Americans, psoriasis was recently in the headlines when reality star Kim Kardashian was diagnosed with the condition after developing red patches on her legs and torso. As she soon learned from her doctor during an episode of “Keeping Up with the Kardashians,” the disease is a lifelong one, and there is no cure. Her story also demonstrated the tendency for psoriasis to run in families, as her mother Kris Jenner also has the condition.

Like many people, Kardashian’s first reaction to the diagnosis was one of embarrassment and self-consciousness. Many people with psoriasis report that they have limited social activities, dating and the use of public swimming pools due to the often highly visible condition. In fact, a 2009 survey by the National Psoriasis Foundation found that nearly three-fourths of respondents say that psoriasis has had a negative impact on their quality of life.

The goal of Psoriasis Awareness Month is to highlight the life-altering impact of psoriasis and psoriatic arthritis and dispel the many myths surrounding it. With that objective in mind, here are a few quick facts to raise your knowledge.

Did you know that…

• …psoriasis is a serious autoimmune disease that causes the skin to crack, itch and bleed?
• …up to 30% of people with psoriasis will develop psoriatic arthritis, which causes pain and swelling of the joints?
• …psoriasis is not contagious and cannot be transmitted through skin-to-skin contact?
• …psoriasis often occurs with other serious health conditions, including diabetes, hypertension, heart attack, obesity and depression?

One of the best ways to better understand psoriasis is to get to know someone with the condition. Here at PatientsLikeMe, 318 patients report psoriasis, and 176 patients report psoriatic arthritis. Women are disproportionately affected, representing 69% of our psoriasis members and 82% of our psoriatic arthritis members. Across both conditions, one of the most commonly reported treatments is methotrexate (Trexall).

Learn more by checking out the profile of one of our psoriasis members today. Also, don’t forget about the Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival. Starting Tuesday, August 30th, anyone can watch and vote on submitted videos at www.psoriasis.org/pam.

Welcome to the third installment of our new weekly podcast series called “It’s Friday – Let’s Journal Club.”

This week’s guest interview is with Sarah Taylor, a type 1 diabetes patient, registered nurse (RN) and friend of the company. Sarah stopped by PatientsLikeMe headquarters last Friday to talk about being diagnosed with type 1 diabetes at age nine and how PatientsLikeMe has become a part of her life today.

After this engaging “Journal Club” session, PatientsLikeMe’s Aaron Fleishman sat down with Sarah to learn more about how type 1 diabetes affects her day-to-day decisions – from eating to exercising – and how as a nurse she envisions shared patient data helping medical providers. Listen in below to hear what that might look like and also what advice she has for those who are newly diagnosed with type 1 diabetes.