The Value of Openness: The PatientsLikeMe Blog

Are you one of the roughly 700 patients with psoriasis at PatientsLikeMe?  We’ve got some exciting new features just for you.

At the end of 2011, we unveiled the Dermatology Life Quality Index (DLQI), a new 12-question survey that helps you measure how psoriasis affects your day-to-day life.   Answer the questions regularly to produce a graph (see above) showing how things are changing over time.  That way, you’ll be able to see how various treatments and interventions are impacting your quality of life.

Another new feature is the Body Surface Area (BSA) lab test, which measures the percentage of your skin affected by psoriasis.  Not sure how to approximate that?  Your palm (including fingers) represents about 1% of your body surface area, so use that as a proxy.  How many palms would equal the area of your body affected by psoriasis?  If it’s 15 palms, for example, that would be equal to 15% of your body surface area.

Finally, if you have listed psoriasis as your primary condition (and more than 350 of you have), you may have noticed that you have a brand new patient icon or “nugget.”  It displays your latest DLQI and BSA scores as well as your age, gender and latest InstantMe status (e.g. “Very good” in the example shown to the left).

So, what do you think of these new features?  Have you tried them out?  We’d love to hear your thoughts and feedback.

We are!  Check out the PatientsLikeMe team members who donned red items (everything from ties to scarves to dresses) in support of National Wear Red Day.  Here’s to increasing awareness of heart disease – the number one killer of women – in 2012.

Stay tuned for more about cardiovascular health throughout February, which is Heart Month.  That means it’s time to not just draw and cut out heart shapes for your Valentine – but to think about the organ that pumps our blood and keeps us alive.

Did you know that heart disease kills more women than all cancers combined?  And that it’s largely preventable?

Now you do – and there’s something you can do about it.  Participate in National Wear Red Day® tomorrow, February 3, 2012.  Better yet, get your friends and co-workers to dig into their closets as well.  Together, you can make a vibrant, high-impact statement with your sea of red.

Another easy way to show your support is to “Like” the Go Red for Women page on Facebook.  Everyone who becomes a fan will receive a free red dress pin to wear every year for this important event.  Want to get inspired to do more?  Watch comedic actress Elizabeth Banks in the short film “Just a Little Heart Attack” below.

Learn more about the risks of heart disease in women here.  And if you’ve already been diagnosed with a cardiovascular condition – such as cardiomyopathy, coronary artery disease or valvular heart disease – don’t go it alone.  Join PatientsLikeMe to share and learn with others like you.

National Wear Red Day® is a registered trademark of the American Heart Association and the US Department of Health and Human Services (HHS).

Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission).  The theme for this particular gathering was “Thrive.”  How can we as individuals – and communities – not just survive but thrive?

One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe.  In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.

Tune in to the video below to find out just that.  Congrats to Ben on an inspiring talk – not to mention his standing ovation!

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our January 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

Have you been told, “But you don’t look sick”?  You’re not alone.  In our November newsletter, we mentioned how many of you use “The Spoon Theory” to describe the realities of your condition to others.  From MS to fibromyalgia to depression, “The Spoon Theory” has become such a popular analogy that it has its own forum tag.

The idea is that patients living with a chronic illness have only a small number of spoons to use each day.  As a result, they must carefully choose how they expend their energy, as each task or effort costs one spoon.  If they use up all their spoons too early, that’s all they can manage for the day.  The drawer of spoons is empty.

If you’ve found “The Spoon Theory” helpful in getting friends and family to understand, you may be interested to hear there’s a new (and quite humorous) companion analogy called “The Fork Theory,” developed by MS member OldSalt. Unlike spoons, forks are not something to cherish, but the very things that cause you pain and discomfort.  Every day, the forks poke you, get in the way and pose challenges.  You can try to put them in a drawer, but they’ll always return when you least expect.

Can you relate to this notion of “battling forks” throughout your day?  If so, perhaps your friends and family can too.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

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

• Coping with worsening memory (Epilepsy Room)
• What types of exercise work for you? (Parkinson’s Room)
• Celebrating 30th transplant anniversary (Transplants Room)
• I love when my caregiver…(fill in blank) (ALS Room)
• Stopping methotrexate, starting Enbrel (Inflammatory Room)
• When others use the handicapped toilet (MS Room)

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

FIND PATIENTS LIKE YOU

The new Tools section (found in your profile sidebar) contains some oldies but goodies like your 3-Star Guide and Doctor Visit Sheet.  But it also has some new additions like Patients Like Me. This is where you can see a match up of all the patients who are like you and explore their recent activity.  It’s also the easiest place to find new members to follow.  (Looking for even more people to follow? Invite Others to join PatientsLikeMe.)

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features various employees from different departments.  Last month, we featured an interview with Research Scientist Mike Massagli, PhD, and today, we share our interview with User Experience Engineer Cris Necochea, who holds the distinction of being the very first PatientsLikeMe employee.  Find out what convinced him to join PatientsLikeMe as a fledgling start-up…and why he’s stayed for the long haul.

1. You’re a User Experience Engineer at PatientsLikeMe. Tell us what that involves.

At PatientsLikeMe, we use a methodology called Agile Scrum, where our focus is on the quick turnaround of short, attainable goals, usually in a two-week period. It’s fast-paced and never boring. Our engineering team is made up of around 10 Engineers, a Product Manager, a Designer and two User Experience Engineers, all under the direction of our Director of Engineering, Steve Hammond.

My focus is on translating the visual designs into a usable and accessible user interface. However, at PatientsLikeMe, we all have a lot of shared responsibility for driving the direction we take with the user experience. Given our short cycles of releasing website updates every two weeks, it’s invaluable to have every member of our team focused on what is most important for the patient. We don’t always get it right the first time, but we take the feedback we get from our members to constantly improve the user experience.

2. What kind of projects are you working on right now?

Currently, we’re wrapping up a long project that will allow our members to describe more about their health experience in the context of the information they already share. We have been testing this for a while with patient volunteers, and the feedback we have received is very positive. We believe it will encourage even more sharing, which, in turn, will build the body of medical knowledge. That’s our ultimate goal.

Aside from that, I’m working on some features to improve the accessibility of the website. Based on feedback of a patient who uses assistive technology (AT), we’re trying to cut down the number of steps to access the essential features on our pages.

3. What do you like best about being a part of the PatientsLikeMe team?

Our team environment, like our entire company culture, is highly collaborative and based around lots of direct communication. Our weekly Journal Club presentations with outside speakers are a highlight, but we also have regular company presentations on what we’re working on, as well as informal “brown-bag” presentations on technical subjects and the like. Sharing is a focus even for the employees at PatientsLikeMe. It helps that the people we have are the smartest I have ever worked with, and they are passionate about the company’s mission.

On a more personal note, our team keeps it witty and light-hearted. It’s always fun to be in the office, but even on days when we work remotely, the laughs keep rolling over our team collaboration tools.   As an aside, I’d like to point out that PatientsLikeMe is hiring. If you enjoy working with hilarious and talented folks that are trying to help people, maybe you’d like to look at our Careers page.

4. As someone who’s been with the company since the early days, what’s the PatientsLikeMe milestone that you’re most proud of?

That’s a very interesting question. I think being the very first employee at PatientsLikeMe is what I’m most proud of. When I received the call from Co-Founders Jeff Cole and Ben and Jamie Heywood about what they were putting together, I had little hesitation about joining an effort that was aimed at helping improve the lives of patients.

Through that time, we have contributed legitimate scientific discoveries and built a team of people who excel in their fields in the service of a mission that is bigger than any one of us. I couldn’t have predicted that we would succeed when I started here in 2005, but I believed enough in the goals of PatientsLikeMe to make the leap. Seeing what we have accomplished in that time is the most gratifying thing of all.

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Interested in joining our engineering team and making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Senior User Experience Designer and Experienced Ruby on Rails Developers at the moment.

Each year in the US approximately 12,000 women are diagnosed with cervical cancer, and more than 4,000 lives are lost as a result. What makes this such a tragic statistic is the fact that cervical cancer can be prevented through vaccines and regular screenings in almost every case.  That’s the all-important message to spread during Cervical Health Awareness Month, which takes place every January.

How does a vaccine help prevent cervical cancer?  By blocking the Human Papillomavirus (HPV), a common infection that almost everyone who is sexually active will have at some point.  We now know that cervical cancer is caused by specific strains of HPV, and as a result, researchers have determined that you can help prevent this life-threatening form of cancer by working to prevent the preceding infection.

The three-part HPV vaccine (marketed under the brand names Cervarix and Gardisil) is available for women age 26 and younger.  If you’re within the eligible range and interested in learning more, talk to your doctor about the costs, details and scheduling of this vaccination, which takes place over the course of six months and is now covered by a majority of insurers.  What if you’re older than 26? You can stay vigilant by getting regular Pap exams (recommended from age 21 and up) and taking an HPV test when recommended. That way, you can catch any infections or signs of cancer early, and get treated promptly.

Beyond raising awareness about prevention, there’s also the importance of information and support for those affected.  Have you tested positive for HPV or been diagnosed with cervical cancer?  Connect with others like you – including our 48 members with HPV and 44 members with cervical cancer – at PatientsLikeMe today.

Unlike most of the health conditions we cover at PatientsLikeMe, cystic fibrosis is one of the few communities where the majority of our members are under the age of 29.  In fact, approximately 60% of our 440 cystic fibrosis patients report that they either fall in the 0-19 or 20-29 age brackets.

What exactly is cystic fibrosis?  A hereditary disease, cystic fibrosis causes the exocrine (secretory) glands to produce abnormally thick mucus.  This can cause problems with digestion, breathing, body cooling and male reproduction, among other things.  Most people with cystic fibrosis are diagnosed by age 2, although some are not diagnosed until 18 or older.  (The latter individuals usually have a milder form.)

Cystic fibrosis is the most common genetic disorder affecting Caucasians in the US.  It is also the most deadly due to the respiratory complications that can occur.  According to the National Institutes of Health (NIH), millions of Americans – including an estimated 1 in 29 Caucasian Americans – carry the defective cystic fibrosis gene.  To develop the disease, however, a person must inherit two defective genes (one from each parent).

So what’s it like to grow up with cystic fibrosis?  Here’s what three teenagers had to say in a recent discussion in our Lungs and Respiratory Forum:

• “I had never had any hospitalizations until the summer I turned 16. I was hospitalized for a ‘tune up’ which barely did anything that I noticed. I went back to living life as I normally did. In high school I was on the volleyball team, in two bands and kept up honor roll grades. This past year has been the worst health wise. I have been hospitalized twice and the discussion of a lung transplant has begun. I cannot believe how quickly I went from having an almost totally normal life to living everyday worried about my weight and lungs and health.” – Female, 18 years old

• “I have some bad days but I’ve never been hospitalized.  This leaves me wondering what the feeling is like to be spending a lot of time in hospitals. I was diagnosed when I was 4, after my mum had tried to convince the doctor for 3 years that something was wrong with me. Without cystic fibrosis (CF), I don’t think I would be the strong person I am today. CF has made me who I am, but I am the only person with CF that I know.  No one in my family has CF so they rarely understand how different I feel, like an outsider sometimes.  But all they say is ‘don’t be stupid, you’re normal.’” -  Female, 17 years old

• “I was diagnosed at about 3 days old, and I practically lived in the hospital until about 5. Then I was only in once in awhile. The past school year I started to get really sick. And I’m currently in [the hospital] right now. It seems to be every three months I’m admitted, and I always pack a bag on my way to the doc because I know I will be admitted. Life is hard, but I’m thankful it’s not worse. I got to play some sports, and I have my best friend who supports me with everything.  It sucks to see my sisters get up and go to school without worries, and complain about little things. But then again I wouldn’t want any of them to have this.” – Female, 17 years old

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

Let’s start with the basics:  do you even know where your thyroid is?

A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms.

January is Thyroid Awareness Month, which means it’s a good time to “check your neck.”  As many as 30 million Americans may have thyroid problems, but more than half of them remain undiagnosed.  To help combat this lack of awareness, two thyroid disease patient advocates – Mary Shomon and Katie Schwartz – have created a new campaign called “I Am the Face of Thyroid Disease.”  It features video messages and photos from around the world to “shine a spotlight on the diversity of thyroid patients and their practitioners, and help overcome the stigma and silence surrounding thyroid disease.”

This diversity can also be seen in PatientsLikeMe’s hypothyroidism community, where more than 2,200 patients (8% of whom are male) report the disease.  Some of the most commonly reported symptoms in our community include cold intolerance, dry skin and lethargy, while one of the top reported treatments is Levothyroxine (branded as Synthroid, Levoxyl, Levothroid and more), a synthetic form of the human hormone thyroxine.  190 patients with hypothyroidism have shared in-depth treatment evaluations of Levothyroxine, detailing their experiences with effectiveness, side effects, cost and more.  These evaluations also contain a wealth of tips and advice.

Here’s what one long-time Levothyroxine user writes on her evaluation:

“I have taken this for 31 years now. If you do need to take this, please pay attention how you feel. If you have symptoms such as dry skin and feeling tired all the time, it might be that you’re not getting enough of it. You might need to up the dosage.  If you have heart racing and you’re losing lots of weight, etc., it might be you’re getting too much. Don’t forget to get a yearly blood test to make sure your dosage level is correct.”

We also have a little over 100 patients (12% of whom are male) reporting hyperthyroidism, a less common form of thyroid disease that occurs when the thyroid gland produces too much thyroid hormone.   Some of the most commonly reported symptoms include heat intolerance, excessive sweating and palpitations.  Along with those who have other forms of thyroid disease – including Hashimoto Thyroiditis – more than 8,000 members belong to the Endocrine, Metabolism and Nutrition Forum, where they can discuss their thyroid experiences with others like them.

Think you might have a thyroid problem?  Perform your own “neck check” at home (to detect any bulges or enlargement in your thyroid gland) and/or see your doctor for a thyroid evaluation today.  A simple blood test called the TSH test can tell you whether your thyroid gland is functioning normally.  If you’ve already been diagnosed, gain wisdom from connecting with thousands of others like you at PatientsLikeMe.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.”