parkinson’s

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

  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

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 …

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Making a difference for Parkinson’s disease in April

  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 …

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World Parkinson’s Congress recap

Here at PatientsLikeMe, we always look forward to hopping on the road and visiting you, the members who generously share personal health journeys so everyone can learn to live better, together. Recently, Molly (she’s part of your Community Team), Brad and Jim (part of our Partner Marketing team) drove north to Montreal to attend the World Parkinson’s Congress with a few PatientsLikeMe members, and they wanted to take a quick second to report back on the experience. Check it out.   Off to MontrealThe World Parkinson’s Congress is designed to create a worldwide dialogue to expedite a treatment or cure for Parkinson’s Disease. It was amazing to see physicians and scientists, alongside health care professionals and nonprofits, connecting with patients and caregivers. It was a wonderful conference, and we were glad to be among the more than 3,300 participants who gathered in Montreal. We couldn’t have picked a better setting than Old Montreal to meet with four of our Parkinson’s community members – Aunti_J, Sap011235, Sunshine221, and Red Hat Queen. They all attended the conference and joined us for a wonderful dinner at Chez L’Epicier. The cobblestone streets, gorgeous historic buildings and an unseasonably warm evening set the scene for exquisite French cuisine …

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

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. 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.   “This year we celebrate the 5th edition of the summer school. We are pushing the boundaries by intensifying our …

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

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 …

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

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 …

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The Patient Voice: Exploring New Chapters

We’ve got more of the patient voice taking us into the weekend. Today we have an interview with AlwaysLearning, a 3-star member of our Parkinson’s Disease Community. We caught up with AlwaysLearning at the 2010 Parkinson’s Disease Unity Walk last spring. She shared with us how she learned about her diagnosis and some of the changes she has made in her life to help her manage her Parkinson’s. Although she’s “always learning,” this member also always jumps at the opportunity to share. Enjoy the video and have a great weekend!

Listen Up! Here Comes The Patient Voice

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice! Subscribe to our YouTube page to receive updates about new PatientsLikeMe videos.

Parkinson’s Patient Interview: A Spring in Your Step

As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  This week on the blog, we’re highlighting some interviews to help you get to know some of the people here just like you.  Here’s an interview with member “angela_b,” a member of our PatientsLikeMe Parkinson’s Community who was interviewed for one of newsletters last year.   Read on to learn more about what puts a spring in her step, how she copes with her Parkinson’s, and what’s she’s learning from other patients.  Enjoy! * * * (Amy) What puts a spring in your step? (angela_b) That would have to be my new love for crafting. I didn’t realize how many ideas I had hiding away in my head until just recently. Now, you cannot even mention a shower or party, and I’ll start planning what favors to give. (Amy) How do you like to spend holiday weekends? (angela_b) I am a hostess by nature – that I get from my momma – so I love to have picnics/parties at the house. Plus it’s easier for me to give the party than to go to one. I …

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