46 posts tagged “Parkinson’s Disease”

The Patient Voice- Parkinson’s member Ed shares his story

Posted April 21st, 2014 by

 

Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with PatientsLikeMe members talking about what #dataforgood means to them.


“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Posted April 14th, 2014 by

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in 2009, but was experiencing symptoms since way back in 2005. And just at the start of 2014, she was also diagnosed with type 2 diabetes. Check out her interview below where she shares about her frustrating Parkinson’s diagnosis experience, how diabetes might impact her future eating habits and what she means by a family of ‘co-takers.’

Tell us about your initial diagnosis experience with Parkinson’s – on your PatientsLikeMe profile, you mention your symptoms aren’t “textbook” – what are they like?

My diagnostic tale has been long, complicated, and oftentimes frustrating, like many PWP experiences, and has yet to come to a medically-agreed upon final conclusion. I don’t care what it’s called. I would just like to understand “why” before I’m actually confined to life in a wheelchair.

After two years of thorough investigation, working with my PCP and including cardiac and rheumatology examinations, my neurologist eliminated many possibilities, with testing for lyme disease and lupus being repeated. The only confirmed diagnoses to be made were narcolepsy without cataplexy, a condition my history showed I’d had since childhood, but  escalated with menopause and restless leg syndrome (RLS).

Three years later, after aggressive treatment to control the narcolepsy and RLS, the unexplained issues continued to worsen. The increasing difficulties were with balance, loss of dexterity, freezing at step-ups, dystonia, shuffling gait, physical restlessness, exertion tremors with pronounced shortness of breath, full body muscle pain and stiffness, arms clinging to the body, and index or middle finger fidgeting the thumb, most presenting intermittently with no definitive pattern. I was referred to an MDS in May of 2009 who reviewed the battery of tests, labs, and imagery from the previous 5 years, conducted a clinical examination, waited 4 months and repeated the examination to conclude “an undefined movement disorder, prominent on the left, not rapidly progressing (therefore not of immediate concern) but probably early Parkinson’s Disease”. I was put back under the care of my primary neurologist with additional dosages of Mirapex, already being taken for RLS, and life continued on.

Within the year occasional episodes of Choreoathetosis greatly disturbed co-workers and friends, and as my lack of alertness became alarmingly severe despite an increase in Provigil, the Mirapex was reduced back to bedtime only. It was clear that treating my Parkinson’s symptoms was not going to be easy with narcolepsy. Under a new supervisor, my job duties were reviewed and adjustments made, but it was still a position that required a great deal of personal interaction, and eventually it was determined that I could no longer meet expectations. I was losing the ability to comprehend, think, and speak “in real time.” I moved back “home” and began the task of making a new and very different life.

My current PCP, who cautiously agrees it’s Parkinson’s, is very supportive and wants very much to improve my quality of life. I have been referred to two neurologists within the last 5 months, neither an MDS, but both, within the first 5 minutes of a single office visit and without my medical records, have dismissed the 2009 diagnosis with no further investigation planned, or even offered. One, who felt cog-wheel rigidity in my left wrist, said “it’s complicated,” but why no genetic testing, no PET or SPECT, and why wasn’t a trial of Sinemet given? The other said I don’t have resting tremor, he found no cog-wheel rigidity, and I show facial expression, so it can’t be Parkinson’s, so there’s no reason to try Sinemet.

It takes approximately 18 hours of continuous observation in a simulated home environment using standardized methodology to gather the data necessary to diagnose narcolepsy, so how can movement disorders, with such a wide array of possibilities and variations, be properly diagnosed in randomly performed clinical examinations generally lasting less than 45 minutes in total?

Your oldest son is now your caretaker, and you mentioned the difficulty of the role reversal, can you tell us about that?

It’s become more of a shared role between both my sons, although the youngest doesn’t live nearby.

It has taken time for all of us to adjust to the changes, and although it will be a continuing adjustment, what I thought I had lost as a mother is not lost after all. I came to realize that I still needed to hold on to being Momma. I had to see that I still have the opportunity to teach my children by example. And they had to realize they still needed me to lean on from time to time and to offer thoughts for their consideration when making decisions. Sure, some things have changed a little, but then the small stuff has always been a moving target.

Twenty-five years ago I’d stay in the car while my oldest went into the neighborhood store alone to make a purchase. Now I sit in the car while he goes into a store to make a purchase for me. So I sit in the car . . . nothing new, just different reasons. Fifteen years ago I’d tell my youngest it was a FYOS night because I had too much work to finish. Now I may tell him to help himself with whatever he can find, but I’m not feeling up to eating anything for a while. So he fixes his own supper . . . nothing new, just different reasons.

What I had to realize is that we are still what we’ve always been. We are family, co-caretakers of each other. We are learning to work together again, just as we did when they were still living at home. Only the reasons have changed.

You’re super active when it comes to filling out your health profile on PatientsLikeMe — how do the tools help you track your health, and what have you learned?

One thing that I have definitely learned is that once a symptom becomes a daily standard, I don’t necessarily notice or remember it unless it was severe or continuous that day. I may have a single incidence of freezing early in the day and if I don’t fall from it, or have a great deal of difficulty breaking loose from it, I completely forget about it by the time I do my symptom update.

I’m certainly learning there’s no predictability! I keep thinking that I’ll see some kind of pattern, but nothing has appeared as yet. I can have symptoms causing me great difficulty for weeks at a time and suddenly disappear for months before being noticed in the slightest again. And others are always with me, but other than the obvious, such as loss of coordination and falls, and stress effects, there’s no pattern or connection, even in the level of severity.

You’ve recently been diagnosed with type 2 diabetes. How has another diagnosis impacted your Parkinson’s and day-to-day life? 

So far it’s been a blessing. I put on a great deal of weight since I began this journey, and with little pleasures left to be enjoyed and apathy holding my focus to the simple pleasure of food, I needed a wake-up call! If I’m ever prescribed Sinemet or any Levodopa, I know I’ll have to reevaluate my eating plan to compensate for the protein conflict, but for now I’m trying to stay focused on controlling my diabetes and losing as much weight as I safely can.

It’s probably a first, but I was disappointed that I did not experience the most common side effect of my diabetic medication, Metformin. Both the doctor and the pharmacist gave stern warning that it causes severe diarrhea in the first few weeks. With the constant battle of constipation PWP endure, I was looking forward to it, but it never happened! No change in that situation at all.

Finally, April is Parkinson’s Awareness Month. You mentioned fitting into a world that ‘doesn’t know’ what it’s like. What would you like to teach people about Parkinson’s?

The most important thing from my perspective would be that Parkinson’s is not fully visible! Besides the mental and emotional changes caused by the altered state of brain neurotransmitters, there are other non-motor symptoms caused by Parkinson’s. Even tremors are not always “visible.”

One of my earliest and continuing issues is Akathisia, better known as internal tremor and restlessness. There are times that if what I feel could be seen, it would look as if I was holding a live electrical wire. I’ve day-dreamed of a torture rack and how wonderful it would feel to be stretched until it stopped. Thankfully, this level of severity is rare for me. It’s more subtle most of the time. It’s a feeling that doesn’t allow me to sit or stand still. Regardless of the fatigue and pain that builds, sitting to rest is worse. The only thing that brings any relief is to keep moving. If I stop in one place I rock. If I must sit I fidget until I can’t take it anymore and I get up and start pacing, stretching, moving! If it’s confined to just the arms, wrapping in a massaging chair pad can ease it in time, but usually it’s full body and the only solution is to keep moving until it settles, often taking hours!

Akathisia is a little-studied, sporadic symptom in about 26% of PWP, and is only one symptom of Parkinson’s that is visible, although it leads to very visible attempts to get relief. Some of the other non-motor function symptoms PWP often face are constipation, bladder incontinence, difficulty swallowing, gum and dental deterioration, excessive sweating, intolerance to heat and cold, daytime sleepiness, pain, vision issues, loss of taste and smell, memory loss, difficulty with word recall, and apathy. Parkinson’s Disease does not stop with making slow, stooped, stiff, shaky people…it’s so much more!

Betty Bland

a.k.a. “dropsies”


Making a difference for Parkinson’s disease in April

Posted April 2nd, 2014 by

 

After getting diagnosed with Parkinson’s disease (PD), PatientsLikeMe member Ed recalled “I needed to talk to people who had the disease, because only they knew what it was like…and could help me get through that initial shock… we can do much better fighting the disease as a group than we can as individuals.” And that’s why all throughout April, everyone impacted by PD is coming together to get the word out for Parkinson’s Awareness Month.

PD is a chronic and progressive movement disorder that affects around 1 million people in the United States, and symptoms of the condition include tremors, stiffness and impaired balance. There is no known cure for PD, but medication and surgical options can sometimes relieve a few symptoms.1

To get PD Awareness Month started, check out one of the many events being organized in April by the Parkinson’s Disease Foundation (PDF) and the National Parkinson Foundation (NPF). You can join the NPF’s Team Hope, get involved in the PDF’s Parkinson’s Advocates in Research (PAIR) program and find local Parkinson’s resources and organizations.

If you or someone you know has been recently diagnosed with PD, head over to the PD community at PatientsLikeMe, where over 8,000 members are tracking their symptoms and sharing their experiences.

Spoiler alert! That isn’t all Ed had to say about his own experiences and what sharing on PatientsLikeMe means to him. Keep an eye on the blog later this month; we’ll be posting his recent video interview.


1 http://www.pdf.org/en/about_pd


PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease

Posted February 5th, 2014 by

Companies Partner With TED Fellow Dr. Max Little to Map the Severity of the Disease

CAMBRIDGE, Mass.— February 5, 2014PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.

In collaboration with TED Fellow Dr. Max Little, the Patient Voice Analysis (PVA) project will for the first time combine­­­ data from two sources: phone-based voice recordings that Dr. Little’s software collects and analyzes to detect markers of PD; and information reported by patients using PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS), a tool that documents patients’ answers to questions that measure treatment effectiveness and disease progression.

Both sets of data will be analyzed by the PVA team composed of Dr. Little and scientists from PatientsLikeMe and Sage Bionetworks. In later phases of the project, the de-identified data sets will be available to the broader research community on Sage Bionetworks’ cloud-based computational research platform (www.synapse.org). By crowdsourcing the analysis, the PVA team hopes to identify relationships between voice markers (like tremors in speech) and clinical signs of Parkinson’s disease (such as tremors in the body) so that it becomes possible to monitor patients’ progression with a short phone call. Current monitoring efforts for PD typically require patients to undergo multiple lab visits that cost both time and money.

“We want to democratize the process of monitoring disease progression and return the results to patients as quickly as possible, so they are empowered to make the best decisions,” said PatientsLikeMe Vice President of Innovation Paul Wicks, Ph.D.. “We invite anyone who has PD to take part and join PatientsLikeMe, so they can stay informed about their condition and generate new insights about this disease,” said Wicks.

Dr. Stephen Friend, President and Founder of Sage Bionetworks, echoed Wicks’s enthusiasm for the collaboration. “We are so excited by this opportunity to work together with Dr. Little and PatientsLikeMe. If successful, I fully expect that Dr. Little’s voice software will be what PD patients and their families the world over use to monitor themselves in real-time, and thereby gain insights on how to better manage their own health.”

For more information on the Patient Voice Analysis Project visit: www.patientslikeme.com/join/pva

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Sage Bionetworks 

Sage Bionetworks (http://sagebase.org/) is a nonprofit biomedical research organization, founded in 2009, with a vision to promote innovations in personalized medicine by enabling a community-based approach to scientific inquiries and discoveries. In pursuit of this Mission, Sage Bionetworks is working with others to assemble an information Commons for biomedicine:

  1. That is supported by an open compute space (Synapse: www.synapse.org)
  2. That supports open research collaborations and innovative DREAM Challenges.
  3. That empowers citizens and patients with the tools they need to partner with researchers and share their data through Sage’s BRIDGE platform (http://sagebase.org/bridge/) to drive the research studies that matter most to them.

Sage Bionetworks is located on the campus of the Fred Hutchinson Cancer Research Center in Seattle, Washington, and is supported through a portfolio of philanthropic donations, competitive research grants, and commercial partnerships.

CONTACTS

Lori Scanlon
PatientsLikeMe
Office: +1 617.229.6643
Mobile: +1 774.217.1330
lscanlon@patientslikeme.com

Thea Norman
Sage Bionetworks
Office: +1 206.667.3092
Mobile:  +1 858.997.8598
thea.norman@sagebase.org


As 2013 winds down… Part I

Posted December 27th, 2013 by

We wanted to take a quick look back and share how the PatientsLikeMe community has continued to change healthcare for good over the last year. Thousands of members added their voices to real-time research, all while providing support to one another and sharing about their personal health experiences. It really is a group effort, so a big shout out and thank you to everyone in the community.

Here are some highlights from 365 days of donating data, sharing experiences and learning more, together…

What were some of the hottest topics in the forums?

Who shared their story on the PatientsLikeMe blog?

More than 8,000 members donated their data to a PatientsLikeMe survey, including…

And close to 5,000 added their voices to our first ever Open Research Exchange questionnaires this year, including…

  • The Treatment Burden Questionnaire
  • The WHY STOP questionnaire on type 2 diabetes
  • A questionnaire on hypertension
  • The Perceived Medical Condition Self-Management Scale

As we move into 2014, we’re more confident than ever that the patient experience – your experience – will not only help everyone learn more about their conditions right now, but continue to change healthcare for good.


The ‘something’ that helps you forget

Posted April 24th, 2013 by

If you’re living with a life changing condition, it’s sometimes hard to take your mind off it. We become consumed by medications, side effects, symptoms and everyday living. But every once in a while, we find something that can take our minds somewhere else. And for a time, no matter how brief, all those worries just drift away. For your fellow PatientsLikeMe community member Parkinson Pete, that ‘something’ is music.

“I have been absorbed in my music project…I realized being that absorbed I really, for the first time in years, forgot that I have PD.” -Parkinson Pete

 

Parkinson Pete was diagnosed with Parkinson’s Disease (PD) back in July of 2008 and he joined PatientsLikeMe shortly after. Just this past February, he started a forum thread (I have found a way to reduce PD- do something else) talking about his new music project and posting some of his great recordings for all to hear.

shawden

What happened next was quite simply…awesome. Parkinson Pete was playing every instrument in his recordings except the drums. So fellow community member Shawden offered up his skills as a drummer. And the duo was formed!

Probably the coolest part of it all is that one lives in Washington, the other in California. Parkinson Pete records the guitar and vocals, and then sends it over to Shawden to add in the drums. Their songs are posted up on YouTube and they share them in the PD Forum. Don’t forget to check out the duo’s latest hits. Two talented people discovered and share their love for music on PatientsLikeMe, and aren’t letting PD get in the way. Can’t wait for their next post.


Young professionals, students and patients gather to collaborate at 5th Parkinson’s Disease Summer School

Posted April 9th, 2013 by

The Parkinson’s Disease Summer School was founded in 2008 by Paul de Roos of the European Medical Students’ Association and Krzysztof Nesterowicz of the European Pharmacy Students’ Association. This year, the school is leaving its European roots and relocating to Montreal, Canada.

Brain Logo HQ - t-shirt

Thirty participants from around the world will work in small teams to develop “relevant and realistic research project proposals.” While the chosen participants come from a variety of professional backgrounds, they all share a common interest in advancing Parkinson’s disease (PD) research. The ultimate goal is to get participants thinking outside the box to create future projects that can “make an impact on the lives of PD patients.”

Just like PatientsLikeMe, the summer school knows that to advance research we have to connect with people who aren’t just studying disease, but living with it. Sara Riggare, a PhD student in Sweden with early onset PD, and Jill Ames-Carson, a physiotherapist from Canada living with PD, will both be at the summer school. Their participation and contribution will help lift patient centered thinking about PD to the next level.

 photo_twitter

“This year we celebrate the 5th edition of the summer school. We are pushing the boundaries by intensifying our engagement with Parkinson’s patients in our learning and evaluation process.” –Paul de Roos, MD

Some of the experts that will be guiding the participants through their work were selected by the Movement Disorder Society. The summer school is also teaming up with The World Parkinson’s Congress so that participants can showcase their research ideas directly to Parkinson’s professionals.

If you’re living with Parkinson’s disease, find others just like you in the growing community of almost 7,000 Parkinson’s patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the Parkinson’s disease forum.


Raising Awareness for Parkinson’s Disease

Posted April 1st, 2013 by

Did you know that four to six million people have Parkinson’s disease (PD) worldwide? And that 50,000-60,000 new cases of PD are diagnosed each year in the US?[1] April is Parkinson’s Awareness Month and there are more ways than ever for you to “Join the Fight” against this neurodegenerative brain disorder.

Screen Shot 2013-03-29 at 11.33.30 AM

The Parkinson’s Disease Foundation has created an awesome toolkit called “30 Ways to Raise Awareness of Parkinson’s.” You’ll discover ways to reach out to your local media, find tips and tricks for fundraising, and learn how to get your public official to join in the fight. You can download the toolkit for free and start spreading the word today.

If you’re living with Parkinson’s disease, find others just like you in the growing community of almost 7,000 Parkinson’s patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the Parkinson’s disease forum.


[1] http://www.parkinson.org/parkinson-s-disease.aspx


Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter

Posted October 25th, 2012 by

Parkinson's Disease Humorist, Blogger and Author Bev Ribaudo ("YumaBev")PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy.  “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says.

In fact, her condition has given her a new purpose:  entertaining other “Parkies” with her deep reservoir of funny stories.  She began a blog called Parkinson’s Humor, and most recently, she’s collected the tales from her blog into a book, Parkinson’s Humor:  Funny Stories about My Life with Parkinson’s (available in paperback and Kindle editions).  Find out what she’s gotten out of sharing her sense of humor in our interview.

1. Tell us about the role that humor plays in your life – and why it’s so important.

Humor has always been a part of my life. Both of my parents had good senses of humor; they needed it with five accident-prone kids. I had a lot of tragedy in my life when I was young – my first husband died in a car crash when I was 23 and my mother died of lung cancer 15 months later. She used to joke about her bald head (from chemo) and pretty much kept on laughing right up until the day she died.

My wonderful husband and I used to do comedy shows tailored for seniors. We traveled the country in a RV and did shows from Florida to Washington. I used to come out dressed as Dolly Parton and then I did a standup routine as Daisy Jane (Minnie Pearl’s niece). It was a lot of fun and we both enjoyed making people laugh.

Bev Performing as Daisy Jane, the Niece of Minnie Pearl

When my mystery illness curtailed our travels, we performed closer to home. We stopped when I just couldn’t physically do it anymore. After diagnosis, I performed various skits at the RV Resort where we lived at the time. Whenever they needed some “entertainment” they’d just call me. I now live in a house and when I found a Parkinson’s chat room early one morning, and people who needed cheering up, I started sharing my funny stories with them and that’s how Parkinson’s Humor, the blog and book, began. I have seen what laughter can do for people, and I know that laughing helps me as well.

2.  You’ve tallied 59,000+ blog visitors to date. What have you gained from sharing and connecting with other PD patients online?

More than you can imagine. I am still not quite sure how it happened, how people from countries I have never even heard of found my blog, but the feedback I get inspires me to keep writing. My wonderful husband says, “Parkinson’s didn’t take anything away from you, it gave you a new life.” And he’s right. I have learned so many things from the people I connect with online and in turn, have shared right back.

I feel like I have a whole new family of brothers, sisters, aunts, uncles and grandparents as well as a dozen or so new parents, LOL. I have one close online friend who ends every reply with “Love, Mom.” She had a daughter who was born the same year as I was, but died as a toddler and she thinks that her daughter would have looked just like me.

3. What led you to turn your funny stories into a book?

The Cover of Bev's New Book

I made the blog stories into a book for just one reason: for people who are not computer literate. I had so many people say, “I printed out one of your stories for my Dad (Grandma, Aunt, Neighbor), who has Parkinson’s. He doesn’t do computers. Will it ever be a book?”

So, I spent most of this summer making it into book form. Sales have been pretty good considering I self-published and did all the marketing myself. I donated the first profit check of $250 to my local PD support group earlier this month. I hope to get a major sponsor soon, so I can send a book to every support group in the country for their library. I will not keep any money from the book for myself; it will all be donated to Parkinson’s. I hope to have huge sales for Christmas (fingers crossed).

4.  You had Deep Brain Stimulation (DBS) surgery on October 18th. What was that like, and how are you feeling?

The first part of the surgery went very well and I am feeling very good. Tomorrow is the second part and I am told that the recovery will be longer and more painful, but I hope to feel well enough to go to a Halloween Party Saturday night. I’ve got my costume all ready (complete with antennae, LOL). There is a blog post detailing the entire surgery on the www.ParkinsonsHumor.com website right now.


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: Uniting for Parkinson’s

Posted November 29th, 2011 by

Please meet Parkinson’s disease (PD) patient Judith, who led a PatientsLikeMeInMotion-sponsored team at the Parkinson’s Unity Walk in New York City last April.  Held annually in Central Park, this massive grassroots event donates 100% of funds raised to PD research.

Judith and Team Members at the 2011 Parkinson's Unity Walk

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

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


Canine Caretakers: How Service Dogs Can Help Many Types of Patients

Posted May 17th, 2011 by

Service Dog Mali

Now that PatientsLikeMe is open to any patient with any condition, we’ve noticed more patients with different conditions sharing similar lifestyle modifications. One example is the use of a service dog.

What are the benefits – both expected and unexpected – of a four-legged assistant?  We asked some of our members to talk about their service dogs’ best qualities.

The Uncanny Seizure Predictor

  • “[My seizure dog Mandy] has awakened me two times just as a seizure was about to start. I don’t know how she does it but she does. In fact, I had a seizure outside once (doesn’t happen often), and Mandy ran to a neighbor’s house and barked until they came to me.” Mandysmother (Epilepsy patient)

The Sensitive Tear Licker

  • “He is my balance dog. He knows when I am about to have a migraine or a seizure and he even knows when I am hurting. Isn’t that funny? He licks my tears when I am crying, and he knows when to stay away from me.”  Some1Special (Mental Health and Behavior patient)

The Good-Humored Mind Reader

  • “[My service dog Mali] was the best decision I ever made. With her I now have some of my independence again, and for a woman who used to climb mountains and water ski, going to the store again after years never going anywhere alone, this means the world to me. The fact that Mali has a sense of humor and seems to read my mind is only another blessing to go along with my newfound freedom.” Anahit (Fibromyalgia patient)

The Anti-Tripping Companion

  • “My neurologist thinks the service dog is preventing my gait from freezing! (When he heels, he constantly moves his head near my knee to check for a command.) I haven’t ended up on the ground or floor since I got him. He is great company! He is always willing to join me on my ‘5 miles/day,’ and since I got him, no one has mistaken my Parkinson’s for being intoxicated!”
    FriendlyTraveler (Parkinson’s disease patient)

Do you have an outstanding service dog too?  Share your experiences in the comments section and don’t forget to add “service dog” to your list of lifestyle modifications.

PatientsLikeMe member jdevita


The Choices Patients Like You – and Like My Mother – Face

Posted February 14th, 2011 by

Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake.

I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark. As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy. She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education. Those choices started from physical and emotional hardship, then led to economic hardship.

Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions. Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek. We all make choices each day, but patients like you often have to choose between living well and just living.

One of the most important choices for patients like you is how to treat your disease. With your health care team, you try to make the best choice with the given information. The problem is information is scarce, untrustworthy or impersonal. That’s right, impersonal. What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome. This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”

The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information. The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions. What jumps out immediately? That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases. Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off. Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.

Efficacy vs. Side Effects

But what if you have other conditions? You are clearly making a choice between efficacy of the medications and the side effects that come with them. While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper. You can ask each person taking the treatment how it works for him or her. Why? Like everyone, you trust people like yourself who are going through or have gone through the same experiences. Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication. How will it affect my sleep? Is there daytime fatigue or “down time”? Can I operate heavy machinery? Will this treatment impair my ability to work in my profession?

These are the questions many of you are asking. These are the choices you make every day. My mother made her choices and has lived to see the fruits of her sacrifice. If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other. We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.

The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal. Simply stated, we’re all in this together.

PatientsLikeMe member dwilliams