The Value of Openness: The PatientsLikeMe Blog

The holidays are a time for thinking about everything you hope and wish for in the coming year.  They’re also a time for appreciating everything you already have.  As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team.

“I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” – Ben Heywood, President and Co-Founder

“I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director

“I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of Business Development

“My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer

“All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder

Happy Holidays!

Yesterday, our interview with ALS blogger and three-star member Rachael gave you a glimpse into what it’s like to live with ALS (Lou Gehrig’s disease).  Today we take a closer look using the data and experiences shared by our 4,844 ALS members, who comprise the world’s largest online ALS population.

ALS, which stands for amyotrophic lateral sclerosis, is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Some of the most debilitating symptoms include progressive weakness, atrophy, fasciculations (muscle twitches), dysphagia (swallowing difficulty), and eventual paralysis of all respiratory function.  Other commonly reported symptoms are shown in the chart above.

Given the severity of ALS symptoms, the life expectancy of an ALS patient averages two to five years from diagnosis, according the ALS Association (ALSA).  However, ALSA states, “The disease is variable, and many people live with quality for five years and more.”  Rachael, who is six years post-diagnosis and living a busy, active life thanks to assistive technology, is a perfect example.

What does assistive technology entail?  For many ALS patients like Rachael, this involves the use of medical equipment to aid basic functions such as:

• Walking (a power wheelchair)
• Breathing (a non-invasive ventilator or “bi-pap” machine)
• Eating (a feeding tube)
• Going to the bathroom (a catheter)
• Communication (an eye gaze system).

How well do these interventions work?  Click on each treatment name above to read evaluations from hundreds of patients about the effectiveness, side effects, cost and more.  In addition to these various types of equipment, one of the most commonly reported treatments for ALS is Rilutek, the first prescription drug to be approved specifically for ALS.  While it does not cure ALS or improve symptoms, it may extend survival or the time to tracheostomy (the creation of an artificial airway in the throat), which occurs when a patient is no longer able to breathe on his or her own.  Currently, we have 1,124 patients taking Rilutek, with 293 treatment evaluations submitted.

What do patients say about this drug?  We leave you with a sampling of comments that patients have shared on their treatment evaluations.

• “One day I was having tremors in my left arm. I took the Riluzole [generic name for Rilutek] and one hour later the tremors stopped. I know it is helping.”

• “I made a decision that 10% increased lifespan from onset was not worth being very sleepy all the time. I would rather require far less sleep each day than live slightly longer.”

• “It is a slight pain because you’re not supposed to eat for two hours before or an hour after, and I’m trying to keep weight on.”

• “I think this extended my time by at least six months. I started taking it about two months after my diagnosis. I’ve been told it’s more effective when you start taking it early like I did.”

• “Quit taking due to elevated enzymes in my liver. Drug caused increased hunger, protein cravings, and very sluggish feeling.”

• “Currently purchasing under Medicare as a tier 4 drug. When in the doughnut hole, the cost is approximately $985 per month.”

• “We can never know if Rilutek does any of us any good. If it doesn’t seem to be doing any harm, I believe it is better to take it than not to.”

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about ALS.

Welcome to the third installment of our new blog series featuring patient bloggers. Last week, we introduced you to Parkinson’s blogger Steve, and today, we’d like you to meet Rachael, a three-star member who has been a part of PatientsLikeMe’s flagship ALS community since the very beginning. In fact, she joined PatientsLikeMe in May 2006, just two months after being diagnosed with this progressive neurological disorder (also known as Lou Gehrig’s disease). Her blog is called “Notes to Self,” and it’s a candid and charming journal of the full life she leads, despite her condition.

1.  What role does your blog play in your life?

As the title suggests, my blog is [filled with] “Notes to Self.” I use it as an aide memoir and an excuse to be verbose as my voice fails me. It is useful to direct people who ask about events in my life when repetition of the story would be tiring. I also find that it helps me to work through my often complicated emotions in dealing with the disease and its incumbent challenges.

2.  Tell us about using an eye gaze system to write your blog posts and more.

As I have blogged on many occasions, the Eye Gaze System [a communication system directed by eye movements] is invaluable to me. I was fortunate enough to get the system before my voice and keyboard dexterity gave up entirely. I have become used to using it, and the transition has been less traumatic than it otherwise might have been. Low-tech communication is all very well in an emergency but cannot compensate for speech.

The Eye Gaze allows me to converse on an almost level footing, conveying thoughts and observations, expressing myself in my own style with all its complexities and idiosyncrasies. The Eye Gaze also allows me to indulge my “inner geek” and access the Internet and Skype to communicate with far flung friends and family.

3.  You’re a big user of the InstantMe tool at PatientsLikeMe.  Why?

I have always been quite an obsessive character. I am possibly overworking the PatientsLikeMe facility. I find it of immeasurable help to have a diarized record of my progression as it relates to my daily life. I tend to ramble, so I find the strict regimen of 140 characters helpful.

A while back, I worried about my memory loss. I had a test done, and it showed no signs of the frontal lobe dementia that terrified me. My consultant reassured me that my short term memory loss was within “normal” parameters. To me it was still unacceptable. Because I have so many small things to remember that people without this condition would find insignificant, something has to give. Having a log helps my recollection. It is also useful for caregivers to reference and saves me effort and energy that I often do not have. It makes my clinical review a whole lot easier and accurate.

4.  In your last post, you talk about reconnecting with friends you’d pulled away from.  Tell us about that.

When I was first diagnosed, I was given the usual prognosis “18 months to live”. Some friends ran away but I realize now that I also withdrew from many people in my struggle to come to terms with the disease. 18 months has come and gone a number of times. Over time I had to re-evaluate my response. Instead of planning for dying I needed to plan for living. Part of this included giving people the opportunity to be involved in my life.

It is, on reflection, a patronizing thing to withdraw friendship without at least offering the choice. Life with ALS is difficult, but the challenges are not insurmountable. I thoroughly enjoy my life and my friends both old and new. Anyone reading my “InstantMe” [history] will know that I have an active social life and a busy home.

It’s the most wonderful time of the year.  Or is it?

The holidays can be a time of merriment and joy marked by festive parties and family reunions.  But they can also be quite challenging.

Despite the great cheer advertised everywhere you look, some people find themselves struggling with stress, anxiety, loneliness and/or depression.  This phenomenon is sometimes called the “holiday blues.”  Add to that things like fatigue, insomnia and seasonal affective disorder (SAD) – which affect many PatientsLikeMe members on a regular basis – and you have the recipe for a perfect holiday storm.

Here’s a look at how our patients are attempting to cope with the stresses of the season:

• “Seeing all the lights, the preparations, the shopping for the holidays makes me dread what is coming.  I try to go to low-key places where there isn’t as much traffic and aren’t as many people.  I try to play down the importance of everything so I don’t become so obsessed with choices and opinions.  I take breaks.  LOTS of breaks.  I try to make sure I take them before I even become overwhelmed in the first place. And I try to find free things to replace some of the costs – either as presents or activities.” – Patient with major depressive disorder

• “Having family meet on a major holiday is enough to upset the emotional applecart so to speak.  Try just to do an average job of cooking, it doesn’t have to be perfect.  Take a break when you can…get involved in objective projects: carefully following a recipe or cooking something with your mind fully on it can help calm panic attacks.  If you are doing your best, that will be the best you can do.” – Patient with Parkinson’s

• “It puts a lot of stress and pressure on me. I have three children who get a lil’ demanding, and then a husband who expects me to travel with three demanding children and then stay at relatives’ tiny houses, etc. The noise, the gossip, the fake hugs from relatives who really do not like me, it all honestly just ‘gets to me.’ But this year, I’m taking my power back by saying NO to the parts of the holidays in which I do not want to participate.” – Patient with bipolar I disorder

• “Sometimes I get depressed because I’m usually one of those people who have to get assistance to give their children gifts for the holidays. I also get depressed because I don’t look the way I want to (I am overweight) and do not want people to see me like that. So the gatherings can be nerve wracking for me. [But] I am learning to let go of the ‘shoulds.’ Not easy, but it can be done.  If I am really not feeling up to something (I get exhausted really easily), then I allow myself to not go, or not run the thing like I used to, or only bring one thing instead of 3 or 4. Pacing myself has been a good thing to learn.” – Patient with fibromyalgia

Are you feeling signs of the “holiday blues”?  Are the demands on your time and your pocketbook starting to overwhelm you?  Before you pack up the car or welcome any house guests, check out these great tips from the Mayo Clinic for getting through the holidays with as much joy as possible.

Thanksgiving is a time for remembering all the reasons you have to be grateful.  For patients who face numerous health challenges, this can mean reminding yourself of all the things you have gained – not lost – since your diagnosis.

One theme that we’re especially proud to hear our 120,000+ members express is how thankful they are to have found a community of people who truly “get” them at PatientsLikeMe.  Our founders envisioned a way to connect patients with others just like them – so they could learn from each other, support each other and help accelerate the pace of medical research – and today, it’s become a reality.  Touchingly, it’s also been the start of many important friendships among our members.

Here are some patient stories that moved us this year:

• “The people on this site deserve more than a simple thank you from me.  The night I found PatientsLikeMe was about eight hours after my neurologists had told me, ‘You have non tremor Parkinson’s disease.’ That night I had some stinking thinking going on.  I considered myself a freak.  Thanks to this site I now consider myself unique.  We are all unique. To my Parkinson’s brothers and sisters, a big THANK YOU for helping me get away from my stinking thinking.”  – Patient with Parkinson’s disease

• “This is the place where we can wonder what is next, cry about what is now and rant about how unfair it all is to us.  Here we are among friends and patients just like us who know have been there or will be going there. It is so much better for me to be on PatientsLikeMe then to just rant to my family and boyfriend.  I figure we can all listen to someone’s rant as tomorrow it may be us.” – Patient with ALS

• “I called one of our members for the first time.  We were on the phone for over three hours!  Every connection I’ve made here that has progressed to the phone call stage has been like that.  This is the best, most fun, most supportive group of guys and gals that I think I have ever come across.  At PatientsLikeMe, we may all come from different walks of life, different locations and yes sometimes different opinions, but here we share such a unique and caring bond.  I’m so lucky to have found PatientsLikeMe.” – Patient with fibromyalgia

• “I have found that I am better able to deal with my moods now that I am able to relate to others with the same/similar problems. It helps to rant. It helps to talk with people who understand. PatientsLikeMe has helped me to understand myself better too. YAY. I love PatientsLikeMe.” – Patient with bipolar II disorder

• “In large part, my success at escaping that life of depravity, depression and addiction is due to the sense of belonging I found at PatientsLikeMe. I was encouraged, and loved and, yes, even put in my place a few times. Even though my path has been neither straight nor smooth I feel that I have my friends on PatientsLikeMe to thank for the sunlight in my life.” – Patient with HIV

No one should have to go through the experience of chronic illness alone.  If you’ve already realized you’re not alone in your journey, we give thanks for you…and every patient like you.

Happy Thanksgiving!

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”

– President Barack Obama

November is National Family Caregivers Month, “a time to thank, support, educate and empower family caregivers.”  There are more than 65 million family caregivers in the US who day in and day out fulfill a vital role on the care team for a family member.  They also tend to be the most knowledgeable person when it comes to daily treatment, diet and exercise regimens for the person they love.

The theme for National Family Caregivers Month 2011, sponsored by the National Family Caregivers Association (NFCA), is “Identifying Family Caregivers.”  The goal is to encourage both caregivers and medical providers to ask for a designated space on every medical intake form for a caregiver name.  Otherwise, the NFCA argues, caregivers are “invisible in American healthcare.”

In contrast, caregivers play an important and prominent role in PatientsLikeMe’s “CareTeam” concept, which was developed to include everyone who is actively involved in the care of our patient members.  That could be a spouse, partner, parent, child, doctor, home health worker, relative or friend.  Patients can invite anyone on their real-life CareTeam to join PatientsLikeMe and be linked directly to their profile.

Currently, there are more than 7,000 caregivers using PatientsLikeMe.  (Browse their profiles.)  Here is a sampling of their stories and situations:

• “I am a mother who would like to know more about bipolar disorder and know how I can help my daughter, and let her know I care.”

• “I am a caregiver for my wife, who has generalized epilepsy. I have allocated a big part of my life to help my wife become more stable.”

• “In 2005 my husband was diagnosed with young onset Parkinson’s disease and through my desire to be the best caregiver possible I forgot about me.”

• “My husband was diagnosed with ALS at age 47 in June 2007 on our 25th anniversary.  It’s hard to see not only his body deteriorate but his spirit too.”

• “For decades, I have been caring for members of my family and community regarding mental illnesses and life challenges, mostly my beloved auntie.”

• “On July 6, 2008, my partner got results saying he was HIV positive. It was a hard night for us, we cried and talked and cried some more.”

• “I am 30 years old. I am one of the caretakers for my father who was diagnosed with ALS when I was 8 years old.   I try to be there for him as much as he needs.”

Are you a caregiver?  We encourage both you and the patient in your life to join PatientsLikeMe to share your experiences, find support and learn from other patients and caregivers.

Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall.  Has this affected your mood?

Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year.  In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer.

One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 123 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male.  A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light.  This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood.  (Does it really work?  Check out the 27 treatment evaluations for light therapy that our patients have submitted.)

What’s it like to live with SAD?  Here are some first-hand reports from members of our mental health community, who answered the question “What are your SAD symptoms?”

• “My symptoms tend to be worsening depression and anxiety.  There are no ‘indicator’ symptoms for me - meaning I don’t realize necessarily ‘Oh I’m starting to feel SAD, crap!’  But all of my Major Depressive Episodes (five so far since I was 20) have occurred in November and December.  And looking back, I can see a downward trend in especially depressive symptoms getting worse starting in mid October - such as depressed mood, more frequent crying spells, fatigue, worse insomnia, headaches worsen, weight and appetite changes, and urges to self-injure.  Three of my Major Depressive Episodes led to suicidal thoughts and short hospitalizations.  The other two, I had frequent suicidal thoughts but did not feel in danger of acting upon them.” – Member with panic disorder

• “[Symptoms are] mild now, but they ran the spectrum from comatose to the walking functional. Kids don’t understand, and our school bus arrived at 6:00 a.m. Needless to say they weren’t hungry, food on the bus = school contraband, so I’d whip up scrambled eggs with cheese and wrap them in a taco shell and tell them to sneak a bite when they got hungry. They just threw them in the bushes for the local dogs to eat. Then I’d watch TV and answer the ever increasing phone calls all day long. If I felt OK, I’d start to prepare for the tornado that was spring.  Nowadays since I don’t have so much responsibility, my symptoms seem mild, but that could change depending on the winds of life events.” – Member with bipolar II disorder

• “I think it varies year to year in terms of severity.  The March/April period is characterized by an increase in my anxiety levels together with restlessness and restrictive eating. The September/October period is characterized by an increase in my feelings of sadness along with intense carbohydrate cravings and a need to sleep more.  Both periods are marked by problems concentrating.  I notice that the light box really helps with the carbohydrate cravings. I think it might even make me less hungry overall.  It’s not that the cravings go away entirely, but instead they are dampened to the level where I *don’t* find myself eating cookies without realizing how I got them.” – Member with major depressive disorder

Wondering what else they patients have to say about SAD?  Or think you might experience the condition yourself?  Join PatientsLikeMe and take part in this ongoing SAD forum discussion.

Last night, the PatientsLikeMe team came together for a great cause: the “White Coat Affair” gala benefit in support of the ALS Therapy Development Institute (ALS TDI).  Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS.

Held the night before the institute’s 7th Annual Leadership Summit, the gala event included the presentation of the first-ever “ALS TDI Lou Gehrig Award” to US Congressman Michael Capuano as well as special recognition for ALS TDI Chairman of the Board Augie Nieto, who has raised more than $30 million for the institute since 2007.

Congratulations to ALS TDI on 12 years of cutting-edge research and leadership.

In August, we proudly announced that PatientsLikeMe Research Scientist Catherine Brownstein, PhD, MPH, had won a prestigious “Young Investigator Award” from the International Congress for Human Genetics (ICHG). As promised, here is Catherine’s first-person report from the conference, held October 11-15, 2011, in Montreal.

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The 12^th International Congress for Human Genetics (ICHG) was a fantastic learning experience with 7,200 geneticists, doctors and researchers in attendance – making it the largest ICHG ever.  The talks were of the highest quality, and the latest genetics research was presented and discussed.  It was an honor to give one of these presentations, since only 8% of those who applied were awarded the opportunity.

That brings me to the main purpose of this blog post: A big THANK YOU to the members of PatientsLikeMe. Your data made our presentation possible. I spoke about the ALS pilot program for genetics entry and search functionality, which allows ALS patients to enter their causative genetic mutations (such as SOD1 A4V, SOD1 D90A and VAPB P56S) and find others with the same genetics. It was a groundbreaking project, and we hope to implement it site-wide in the near future.

I also presented some of the key results from our recent survey on genetic testing:

• 16% of you have had some form of genetic testing.
• Of those who have been tested, 31% have had a direct-to-consumer genetic test.
• If cost were NOT a consideration, 83% of you would be at least moderately interested in getting a comprehensive personal genetic test.
• 68% of you said you would be at least moderately interested in finding others with the same genetics as you.

Thanks again for your participation in the survey, for being members of PatientsLikeMe and for sharing in our research efforts. I hope that next year I’ll be presenting PatientsLikeMe’s site-wide genetics functionality.

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.

Please meet ALS patient sillyangel, who led a PatientsLikeMeInMotion-sponsored team at the Walk to Defeat ALS in Des Moines, Iowa, on October 8, 2011. As you’ll see, she proudly wore her bright blue PatientsLikeMeInMotion t-shirt to stand out in the crowd.

Congrats to sillyangel and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you along your journey.  For more PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall – or next spring?  Sign up for PatientsLikeMeInMotion today.

For someone who uses a wheelchair, there are barriers and hazards everywhere – things that others may not see. But how do you raise visibility of the issue?

One of our longtime MS members, gamma, decided that a photo essay of the obstacles that exist in her neighborhood (considered a wheelchair-friendly community) and others would the best way to illustrate the problem. “My hope is that when this presentation is completed I can get it into the hands of people that can use it to raise awareness about unsafe situations for the wheelchair or stroller user,” she says.

What’s an example of a hazard or barrier? Wheelchair users at PatientsLikeMe – who number more than 1,300 and use both powered and manual wheelchairs – report having difficulty with potholes, cobblestone entrances, uneven sidewalks, narrow aisles, yellow bumps on ramps, heavy doors and more. But it’s easier to “see” these hazards and barriers than just list them. That’s why gamma is calling for photo submissions.

Have you encountered something in your neighborhood that would pose problems for a wheelchair user? Snap a photo to aid this grassroots patient project. Then send it to shalegamma@aol.com along with your full name for credit. Thanks in advance for your contribution!

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.