18 posts from December, 2011

Life with Microscopic Colitis: Managing Holiday Travel

Posted December 29th, 2011 by

You may have heard of inflammatory bowel disease (IBD), but have you heard of microscopic colitis?  One of several conditions under the IBD umbrella, this chronic, inflammatory disorder of the colon (aka the large intestine) can cause watery diarrhea and abdominal pain.  It gets its name from the fact that microscopic examination of the intestinal tissue is required to diagnose it.

A Snapshot of the Microscopic Colitis Community at PatientsLikeMe

While less severe than other forms of IBD, microscopic colitis can cause considerable discomfort.  Combine that with the stress, long hours and unpredictability of holiday travel, and you can imagine the challenges.  What do our 24 members with microscopic colitis (80% of whom are female) have to say about this annual ordeal?  Here is a sampling of their stories and advice:

  • “Yes, only people with colitis know how important a bathroom is!  I am so glad to have found others with this problem.  When I talk about it, nobody knows what it is. I have to ride to Chicago at the end of this month, and it is a five-hour drive.  It makes me so nervous to be in the car for that long. I am already stressing over it. Thank goodness it is my son taking me there so I can say pull over fast.”
  • “I reduced my caffeine (coffee), that seems to help somewhat, but I have flare ups.  I also have bladder issues.  I also had colitis for quite a long time before being diagnosed.  About the bathroom thing, I know all the bathrooms en route too, and I sleep closest to the bathroom. (Actually when were looking for a house, that was a requirement for me to have a toilet/bathroom next to me.)”
  • “There is a gas station, convenience store, or restaurant at almost every exit. If you explain why you need to use their bathroom, they usually let you. My GI specialist also has me on Colestipol, which is much better than the Imodium-type drugs. The Colestipol I only have to take twice a day, and it is much more effective. I can usually avoid eating anything before leaving, and usually don’t have a problem with trips that long.”

For those with microscopic colitis or other forms of IBD, going to grandmother’s house for the holidays can be quite a different story.  Fortunately, you’re not alone.  At PatientsLikeMe, we have 27 patients who report IBD, and more than 4,400 members subscribed to our Intestinal and Digestive Health Forum.  Need a little support this holiday season?  Log on to PatientsLikeMe to share and learn with those who can truly relate.


Year in Review with the National Psoriasis Foundation

Posted December 28th, 2011 by

Bruce Bebo, PhD, Director of Research and Medical Programs at the National Psoriasis Foundation

Last August, we recognized Psoriasis Awareness Month on our blog and shared some little-known facts about this autoimmune disease, which affects 7.5 million Americans.  Today we learn more about 2011 research highlights – as well as upcoming initiatives – surrounding psoriasis and psoriatic arthritis in our interview with Bruce F. Bebo, PhD, the Director of Research and Medical Programs at the National Psoriasis Foundation.

1.  What did the National Psoriasis Foundation learn from its various research projects this year?

One of the biggest things that the National Psoriasis Foundation learned from its research projects this year is that a large number of people with psoriasis may also have undiagnosed psoriatic arthritis. Our new survey, conducted in April and May 2011, revealed that psoriatic arthritis may be more common than currently thought. The data shows that nearly one in four people with psoriasis, which affects 7.5 million Americans, may have undiagnosed psoriatic arthritis—a type of inflammatory arthritis that affects the joints and tendons and is reported to occur in as many as 2 million Americans.

Learn More about Psoriatic Arthritis, a Painful Complication of Psoriasis

We also found from this research project that people with confirmed diagnoses of psoriatic arthritis were not diagnosed in a timely manner. Forty-four (44) percent of the respondents said they had symptoms for one year or more before being diagnosed, and 29 percent of people had a delay of two years or more for a diagnosis. Early diagnosis and treatment of psoriatic arthritis is vital to prevent or slow joint damage.

2.  Why are your guidelines for pregnant and lactating women with psoriasis important?

These guidelines are important because treating psoriasis in women who are pregnant or breastfeeding presents special challenges due to the potential risks and side effects of certain medications. Also, because of the ethical concerns of placing this patient population in clinical trials, there is just not that much data to guide treatment choices. Many of the currently approved psoriasis medications could have adverse effects on the developing fetus, so care must be taken when choosing a treatment approach. There is also a lack of research to determine the effects of medications on infants who are breastfeeding.

3.  Tell us what research initiatives and plans the Psoriasis Foundation has for 2012.

In 2012, the National Psoriasis Foundation will continue to make finding a cure for psoriatic diseases its highest priority by increasing our investment in biomedical research.

This year, we will invest $1.7 million in research grants to scientists studying psoriatic diseases. We focus our investment on projects that have the highest likelihood to advance our understanding of psoriatic diseases and find a cure. The Foundation also awards Fellowship grants that provide resources for the best and brightest clinical scientists to study psoriasis under the guidance of an established research mentor. By doing this, the Foundation hopes to promote more young, promising clinical scientists to pursue a career in psoriasis research and patient care.

Find Out About the National Psoriasis Victor Henschel BioBank

Other research initiatives of the Foundation include the National Psoriasis Victor Henschel BioBank, a collection of biological samples and clinical information used by qualified scientists to further the field of psoriasis genetics. In 2011, we received our 2,000th DNA sample and were able to begin releasing these biological samples to three researchers who are studying psoriasis and psoriatic arthritis. We will expand this project in 2012.

4.  How do the holidays affect psoriasis and psoriatic arthritis?  Any tips?

Psoriasis and psoriatic arthritis can often be exacerbated by stress, and many people even report that stress is a trigger for their psoriasis flares. The stress and excitement of the holidays could worsen these diseases for some people. Additionally, the cold, dry air and winter weather during the holiday season can worsen many people’s psoriasis.

During the holidays, try and keep stress at bay by practicing stress reduction and relaxation. Some people benefit from participating in activities that help reduce stress, including: breathing techniques, meditation, yoga, relaxation techniques and regular exercise. Also, try and get enough sleep and eat well to keep yourself healthy during the holidays. Experts suggest that during the winter it is best to moisturize constantly and use lukewarm showers, rather than hot ones, to keep skin hydrated.


Today’s Photo: A Sea of Bright Blue in Motion

Posted December 27th, 2011 by

Please meet ALS patient iceberg (front right), who led a PatientsLikeMeInMotion-sponsored team at the 2011 Walk to Defeat ALS in Western Pennsylvania.  We count at least 25 bright blue PatientsLikeMeInMotion t-shirts worn by the team (called “Hrezo’s Heroes”), making this one of the biggest groups we’ve sponsored!

Iceberg and His Large, All-Ages Team Representing in Bright Blue at the Walk to Defeat ALS

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

Thinking about organizing a team for next spring?  Learn more about the PatientsLikeMeInMotion program today.


Holidays Wishes from PatientsLikeMe to You

Posted December 23rd, 2011 by

A Group of Very Jolly PatientsLikeMe Employees

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.

Ben Heywood

“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

Paul Wicks

“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

David S. Williams III

“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

Robert Palladino

“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

Jamie Heywood

“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!


Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published

Posted December 22nd, 2011 by

Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting.   In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. In addition, 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.  (Check out our press release for more on this survey, which we conducted with our partner UCB.  PatientsLikeMe and UCB launched the epilepsy community in 2010.)

A Sample Section from the Epilepsy Survey

Now, we’re pleased to announce that our full survey results have been published as an open access article in the scientific journal Epilepsy & Behavior.  This gives you and anyone interested in epilepsy the opportunity to dig deeper into our findings.  For example, another interesting discovery is that one in three epilepsy patients surveyed did not know a single other person with their condition.  That is – until they joined PatientsLikeMe.  Survey respondents reported the benefits of using an online community to find other patients like them, and strikingly, the more friends with epilepsy that users had in the online community, the more benefits they experienced from using the site.

Do you agree that having friends with the same condition – either online or offline – has affected your experience for the better?  Share your thoughts in the comments section.

PatientsLikeMe member pwicks


A Peek at the December Newsletters for Members

Posted December 21st, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our December edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

Can’t sleep this holiday season?  It’s not just you.  Did you know that…

  • More than 23,000 of you – nearly a fifth of all PatientsLikeMe members – report insomnia?
  • People with insomnia may also experience impaired function, mood issues (e.g. irritabilityanxiety) and daytime drowsiness as a result?
  • There are two forms of insomnia:  secondary (where it’s the symptom or side effect of something else) and primary (where it is its own disorder)?
  • Members with insomnia have shared their experiences via hundreds of treatment evaluations for prescription drugs such as AmbienTrazodoneSeroquel and Lunesta?
  • Members have also evaluated over-the-counter (OTC) sleep aids like diphenhydramine (Benadryl) and Melatonin as well as herbal supplements such as Valerian and Passionflower?
  • There are numerous forum discussions about insomnia, including the six featured below in “Join the Conversation”?

Finally, here’s something else to know.  Logging onto to the PatientsLikeMe forum in the dead of the night can be a great help.  It may not cure your insomnia, but chances are, you’ll find several others who are awake and going through the same thing.

Here’s hoping your holidays are as restful and joyful as possible.

– KateEmmaLizJeanetteSharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

What’s happening in the forum in the midnight hour?  Check out some of these insightful threads about insomnia below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site.  Here are our top functionality enhancements for December.

UPGRADED LABS AND TESTS
There are new labs and tests you can monitor at PatientsLikeMe. Use the search tool or browse the list to see what’s now available, including Blood Glucose, Ejection Fraction, PSA, Creatinine, AST and more.  Don’t see the lab or test that you’d like to monitor?  Email us at dataintegrity@patientslikeme.com with your request.

CLICKABLE CONDITION NAMES ON PROFILES
You can now click on the condition name in the header of any profile, including your own, to view the new-and-improved condition page.  Checking out someone’s profile and see a disease you don’t recognize? Simply click through to learn more.  Or from your own profile, click through on any of your conditions to see who else has it, the most commonly reported treatments and much more.


Life with ALS: What We’ve Learned

Posted December 20th, 2011 by

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.

Some of the Most Commonly Reported ALS Symptoms (and Their Reported Severity) at PatientsLikeMe

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:

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.

Some of the Side Effects Our Patients Report for the ALS Drug Rilutek

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.


Spotlighted Blogger: ALS Patient Rachael of “Notes to Self”

Posted December 19th, 2011 by

ALS Blogger Rachel of "Notes to Self"

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 Snapshot of the InstantMe Survey Rachael Takes Daily at PatientsLikeMe (Click Through to See Her Latest Entries)

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.


Coping with Holiday Stress and Blues

Posted December 16th, 2011 by

All Types of Patients Are Susceptible to Holiday Stress

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.


Life with Parkinson’s Disease: What We’ve Learned

Posted December 15th, 2011 by

On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD).  Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members.

Age at Which Patients Experienced Their First Parkinson's Symptom

Taking a look at the makeup of our PD community, 52% are male, and 48% are female.  More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59.  Others report experiencing their first symptom anywhere from adolescence to their seventies.  (See the chart for a complete breakdown.)  What exactly are the symptoms of this condition?  Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation.

As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions.  Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more.   Here’s what one patient writes about Sinemet on her evaluation:  “I notice my leg limp and motivation to walk improves dramatically when it kicks in. The tremor is much less.

Some of the Most Commonly Reported Treatments for Parkinson's, As Reported by PatientsLikeMe Members

Other commonly reported PD treatments include prescription medications such as Ropinirole (Requip), Pramipexole (Mirapex), Rasagiline (Azilect) and Amantadine; OTC supplements such as CoQ10; and surgical procedures such as Deep Brain Stimulation (DBS).  Click on the treatment name to see the data we’ve amassed for each, including hundreds of treatment evaluations submitted by our patients.

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


Spotlighted Blogger: Parkinson’s Patient Steve Ploussard of “Attitude & Fitness Wins”

Posted December 13th, 2011 by

PatientsLikeMe Member and Parkinson's Blogger Steve Ploussard Doing His Best "Heisman Trophy" Pose

Last week we kicked off a new blog series featuring patient bloggers, and today, we’re pleased to present our second installment.  Please meet Steve Ploussard, a longtime PatientsLikeMe member who writes a blog about living with Parkinson’s disease (PD) called “Attitude & Fitness Wins.”  Steve decided that blogging was the perfect way to “come out” about his Parkinson’s diagnosis and become more at ease with it. Check out our interview with Steve below to learn how he developed his “fighting spirit,” what he’s doing to raise PD awareness and who inspires him the most.

1.  What’s it been like “going public” about Parkinson’s on your blog?

Going public (“My Coming-Out Party”) on my blog has been a very emotional experience for me.  When I clicked “Publish” after writing the post, I felt as if the weight of the world was off my shoulders.  I became relaxed when talking about having PD with my family and friends just knowing they had read my blog and finally knew I had the disease.  I believe one of the reasons my tremors have become less frequent and not as pronounced is that I’m more comfortable with whom I am, a 55- year-old man with Parkinson’s.

I had basically been trying to hide that I had PD for seven years. Just try keeping a secret (of the magnitude of having Parkinson’s) for seven years.  It wears on you and can consume you if you let it.  Going public has also allowed me to create awareness of what Parkinson’s disease really does to a human being and their family.  The perception most have is that the disease is life-threatening and some have similar thoughts as if I had cancer and was going to die from it.  I use the opportunity to educate that PD does not kill you.  It only makes it more difficult to live a normal life due to the symptoms.

2.  What role does PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS) play in your disease management?

The PDRS is the only tool I am aware of that a patient can actually use to track the progression of PD.  I have taken the test (a series of multiple choice questions about everyday activity) at least once a quarter for the past four years, and it has helped me immensely, especially from an emotional standpoint.  When I first took the test back in November 2007, my score between 0 to 100 (100 being the worst or the furthest along with Parkinson’s) was 7.  Just before I started to answer this question today, I took the test and scored an 11.  My high was a 22 back in May 2011.

A Sample Section of PatientsLikeMe's Parkinson's Disease Rating Scale (PDRS)

Obviously, I have a very slow progression of the disease. That gives me confidence I can live a normal life for years to come.  The PDRS may not be an exact science, but it does give us a baseline in measuring PD.  Your score can be used in determining what your next step is in fighting the disease and/or increasing or decreasing your medication(s).  Over the years, every time I meet someone with Parkinson’s, I ask if they are aware of PatientsLikeMe.  If not, I direct them to the website and explain about the benefits of the site, emphasizing the use of the PDRS.

3.  What’s some of the best advice you’ve gotten from other PatientsLikeMe members?

The information and history on the PatientsLikeMe website of approximately 6,000 members [with PD] is phenomenal.  The wealth of knowledge you have at your fingertips is extremely powerful.  If you have PD and are not member, you are simply missing out.  Neurologists specializing in Parkinson’s, in my humble opinion, should have PatientsLikeMe and the forum as required reading in their daily practice.

The following is one example of an experience I had recently with PatientsLikeMe.  At 3:00 a.m. one morning, not able to sleep, I went online to the PatientsLikeMe website.  The following is an outtake I posted on the [Parkinson’s] forum within PatientsLikeMe:

Over the past 2 years I have tried to go on Carbidopa/Levodopa 3 times, the 3rd time being this past week, in hopes it would help control my increasing tremors.  And now for the 3rd time I am stopping due to the side effects.  For the 3rd night in a row I could not sleep due to the constant high anxiety/buzzing feeling along with uncontrollable gyrations of my head and arms.”

Within 24 hours, four members responded with their advice, which was basically to start with a lower dosage and increase very slowly, but to give the drug a chance.  J. Marley, Lexiegirl, Parkinson’s Pete and equus, thank you from the bottom of my heart.  I made the dosage change and gave the drug a chance and now Carbidopa-Levodopa [brand name Sinemet] is my friend.

4.  You talk a lot about your fighting spirit on your blog.  Where do you draw inspiration and strength?

Good question.  My #1 inspiration in fighting the disease is having the right attitude and conviction to win the battles and the war against PD. This is why I am so obsessed with proper fitness and working out every day.  I made the commitment back in September 2009 that, at the very minimum, I would go to the gym six days a week and do 60 minutes of cardio, 30 minutes of weights and 15 minutes of abdominal work.  I am currently in the best shape of my life, which is an extreme confidence booster that I can win the war and hold off this disease until we find a cure.

Outside my family, there are three men that I draw inspiration and strength from almost daily.  They are Coach Jim Valvano (“Jimmy V”), Michael J. Fox and Mohammed Ali.  This past week was the anniversary of Jimmy V’s memorable speech at the ESPY awards on ESPN, when he was still alive fighting cancer.  I have heard and played the speech so many times I can almost recite it by heart.  The main strength I draw on is what Coach Valvano asked us all to try and do each day.  We need to be deep in thought about something important to us every day.  Each day we need to laugh and enjoy life.  And lastly, each day we need to have emotions that move us to tears.  If we can have deep thought, laughter and cry in the same day, that’s a BIG DAY.  The tagline of the V Foundation, “Don’t Give Up, Don’t Ever Give Up” is the mission statement on my blog (www.AttitudeFitnessWins.com).

As we go through life, we all have our heroes we look up to for inspiration.  For me that has changed as I have gotten older and hopefully wiser.  When I was young, my heroes were sports stars like Mickey Mantle, Pete Maravich and Jack Nicklaus.  In my adult life family members have become my heroes and support as I fight PD and try and live a normal life.  My Dad, my Mom, my Uncle Jack, to name a few, have always inspired me to be the best I can be.

Boxing Legend Muhammed Ali, Whose Attitude Inspires Steve Ploussard on a Daily Basis

Since being diagnosed with Parkinson’s, my motivation to make an impact and help others living with PD comes from Michael J. Fox and Mohammed Ali, both of which have had Parkinson’s for many years.  Michael J. Fox is an incurable optimist that I have respected since reading his book, “Always Looking Up.”  His quest through his foundation in finding a cure for the disease in his lifetime is unsurpassed and is my Holy Grail.  And then there is The Greatest, Mohammed Ali.  My blog’s mantra, “Attitude & Fitness Wins,” says it all.  I draw strength and a confident attitude every time I see it.  His jubilation and his commitment to fitness and being a winner are attributes I want to portray in my life and hopefully pass on to others and have an impact on their lives as well.

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To find out more about PD, check out our follow-up blog post, “Life with Parkinson’s Disease: What We’ve Learned.”


Today’s Photo: Mama in Motion

Posted December 12th, 2011 by

Please meet multiple sclerosis (MS) patient hotmama08, who led a PatientsLikeMeInMotion-sponsored team that included two four-legged advocates at Walk MS in Columbia, SC, on May 14, 2011.  We especially love how the team member to the right wore bright blue shoes to match her PatientsLikeMeInMotion t-shirt!

Hotmama08 and Team at Walk MS 2011 in Columbia, SC, One of 600 Such Walks Across the Country

Congrats to hotmama08 and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your health condition. We’re honored to support you every step of the way. For more PatientsLikeMeInMotion team photos, check out our growing Flickr slideshow.

Thinking about organizing a team for next spring?  Learn more about the PatientsLikeMeInMotion program today.


Life with Bipolar I Disorder: What We’ve Learned

Posted December 9th, 2011 by

Yesterday, our interview with bipolar blogger Andrea gave you a glimpse into what it’s like to live with bipolar I disorder.  Today we take a deeper look into this mental health condition using the data and experiences shared by our 1,237 bipolar I members.

First off, however, you may have heard of something called bipolar II as well, so let’s talk about how bipolar I and II differ.  Bipolar I is a subdiagnosis of bipolar disorder that conforms to the classic concept of manic-depressive illness.  It is characterized by at least one manic or mixed episode, and there may be episodes of hypomania (marked by elevated mood, hyperactivity and grandiosity) and major depression as well.  In contrast, bipolar II disorder – which is slightly more prevalent at PatientsLikeMe with 1,556 patients reporting it – is marked by depressive episodes that are more frequent and more intense than the manic episodes.

A Snapshot of the Bipolar I Community at PatientsLikeMe

Now, let’s take a look at the wealth of data found at PatientsLikeMe.  To give you a sense of the makeup of our bipolar I patients, 74% are female, more than 78% have an official bipolar I diagnosis, and approximately 40% report experiencing their first symptom prior to the age of 19.  What exactly are the symptoms of this condition?  Some of the most commonly reported include delusions, excitability, flight of ideas, grandiose thinking, hallucinations, irritability and paranoia.  As you can see, most of these speak to the “manic” side of bipolar I disorder, which involves “excitement of psychotic proportions” as well as hyperactive, disorganized behavior.

As Andrea’s interview yesterday revealed, treating bipolar I disorder can mean treating both mania and depression simultaneously.  Further, our patient-reported data shows that the two prescription medications she takes currently – lithium for mania and Lamictal for depression – are among the most commonly prescribed treatments for bipolar I patients, along with individual therapy and Seroquel.  How well do these treatments work?  Click on each treatment name to read our patients’ evaluations of their effectiveness, side effects, cost and more.

Finally, much can also be learned directly from the experiences our patients share on their profiles, treatment evaluations or forum posts.  We leave you with several patient quotes from our Mental Health and Behavior Forum that help to fully illuminate life with bipolar I disorder:

  • “My manias last for about three to four months and are followed by depressions that tend to also last three to four months.  Mine is the classic form of the disease with manias characterized by hallucinations, grandiosity, and impulsivity, and depressions characterized by fatigue, guilt, and somatic concerns.”
  • “The condition is every part of me as anything else. My choice to treat it arises from the consequences of living with bipolar in a non-bipolar world and not because I am broken and in need of repair. Bipolar “disorder”, well, whose order am I in disarray?”
  • “Now I’m a little manic.  I know what you mean about relentless depressions.  I have those too.  At the other end of the spectrum, I become psychotic.  That’s the part that really frightens me and usually lands me in the hospital, or worse.”
  • “A month ago, I truly would have been leveled by all this drama.  I’ve come quite a distance in a short period of time.  You guys give me such strength.  I know that with your help, I can make it through life’s ups and downs while keeping mine under control.”

If you’ve got something to share about bipolar I as well, join the conversation today!


Spotlighted Blogger: Bipolar Patient Andrea of “Lithium and Lamictal”

Posted December 8th, 2011 by

How do we know we’re truly living in a Health 2.0 age?  Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions.  For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our members, Mollee Sullivan, and last month, we spotlighted diabetes patient Michael Burke’s blog “Life on the T List,” which shares his experiences before and after a kidney transplant.

Bipolar Blogger Andrea of "Lithium and Lamictal"

As a result of this growing trend, we’ve decided to begin a blog series featuring some of the other amazing bloggers that are part of the PatientsLikeMe community.  To start things off, we’d like to share our interview with Andrea, a three-star member who started a candid blog about life with bipolar I disorder earlier this year called “Lithium and Lamictal.”  (The title refers to the two treatments she’s found that work best for her.)  Tune in below to find out why she began blogging and what she hopes to achieve.

1.  Why did you decide to start blogging about bipolar disorder?

I decided to start blogging about bipolar disorder after 21 years of living with this health condition. I was diagnosed with manic depression (now referred to as bipolar disorder) in 1989, and the main reason I bought my first computer in 1997 was so that I could try to connect with other patients and research bipolar disorder using the World Wide Web. I just knew there had to be more information out there than what I had gotten from my psychiatrists and the few pamphlets and books I had read before everyday people began using the Internet for research.

I’m still trying to learn as much as I can about bipolar disorder and health and wellness. I have always been interested in finding information about how people are living day-to-day with the condition. When I decided to start my blog, I wanted to give readers a view into my life so that I could provide an example of someone who is trying to do her best to manage the condition. I hope that my blog will inspire others to take charge of their physical and mental health, and also to remain hopeful and positive.

2.  Your blog is called “Lithium and Lamictal.”  How long did it take to find this treatment combination, and what difference did that make in your life?

When I was first diagnosed with manic depression in 1989, I was given lithium as a monotherapy. It prevented mania, but I still got depressed and I just had to deal with it because psychiatrists wouldn’t prescribe antidepressants since I had a history of severe manias and psychotic breaks. I think it was 2001 when my then-psychiatrist recommended that I try Lamictal at a time when I had been stable for a while. I took it and I didn’t get depressed for a few years, but I did have some unpleasant side effects, so I discontinued it and eventually experienced a serious depression.

Last year, when I was going through another serious depression, my new psychiatrist suggested that I try Lamictal again. After several months, my depression lifted, and after reflecting on my experiences with the medication, I realized that while Lamictal wasn’t great at relieving my depression, it definitely seemed to prevent my depression. At this point, I plan to take it indefinitely. I am taking a lower dose than with my old psychiatrist, and I also take medication and supplements to counteract the side effects. So now I take lithium and Lamictal and feel healthier than ever. All things considered, they are the best medications I have tried with the fewest side effects. Together they prevent mania and depression, and I hope I’ve found a combination of medications that will work for me for years to come.

3.  What have you gotten out of being a member of PatientsLikeMe?

I really like tracking all of my health conditions and medications as well as exercise and sleep. It’s a good way of figuring out what is working and what isn’t. It’s also a reminder that I need to continue to take good care of myself, and it lets me know when I am slipping and need to get back on track. My psychiatrist likes it when I bring the charts to my appointments. She has also started asking me to bring my blog posts.  The [PatientLikeMe] forums are a good way to learn from other patients about what is working for them. I post my new blog posts in the forum in the hope that they might help or inspire people.

4.  Your username at PatientsLikeMe is Yoga Lover.  What role does yoga play in your self care?

I was taking yoga from a great yoga instructor when I chose my username. Yoga is excellent for increasing strength, flexibility, relaxation, learning about mindfulness, and more. Not every yoga instructor focuses on spirituality, but mine did. We had candles burning, dim lighting, a picture of B.K.S. Iyengar and houseplants in the studio. We also had short discussions before class that everyone was encouraged to participate in.

Later in the class, as we went through the poses, he would talk to us about things we should be focusing on. Something that helped me the most was when he explained that just as a stomach digests, a mind thinks. The thoughts aren’t that important. We can decide who we are and what we want to do regardless of our thoughts. We don’t need to be embarrassed about our thoughts or judgmental of them, we just need to observe them.  He recommended reading the book Light on Yoga Sutras of Patanjali, by B.K.S Iyengar, which I did. If you are interested in yoga, I would recommend it highly.

Because of financial considerations, I stopped attending that yoga class and joined my local YMCA. I take a spinning class three times a week and walk on the off days, as well as doing some swimming and strength training. I’m not going to a yoga class currently, but I still focus on things I learned in yoga about breathing, meditation, relaxation and mindfulness.