Parkinson’s Disease

Author, Reiki master, inventor, husband: Guest blogger Karl Robb shares why he’s #MoreThan Parkinson’s disease

Inspired by our new #MoreThan video series, patients have been speaking up about what makes them more than their diagnoses. Below, Karl Robb — blogger, author and advocate — shares his #MoreThan story about living with Parkinson’s disease. My name is Karl Robb. I have been blogging about Parkinson’s disease for over 10 years on my site, www.ASoftVoice.com. I was diagnosed with Parkinson’s when I was 23 years old, but I showed symptoms as early as age 17. On a rare occasion, I would encounter a resting tremor, often triggered due to stress or fatigue (after a tennis match). It took me at least nine doctors and six years for me to receive the diagnosis and to begin the medical treatment to improve and to deal with the revelation of my condition. The progression of my symptoms have been slow and gradual. I am currently 50 years old. Most of my 50 years have been spent learning that I had Parkinson’s disease (PD), how to deal with it, learn from it and to try to keep it from advancing as best as I possibly can.   Parkinson’s disease may have slowed me a little, but I continue to write, work on …

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Cannabis for PD treatment? Member Ian says it’s something to shout about

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my medicinal cannabis,” he says. Tremors “through the roof” Ian has been living with Parkinson’s disease symptoms since the mid-1990s. At one point, his tremors were “through the roof,” he says. He experienced severe side effects while on prescription medications for PD – including nausea, acid reflux, heartburn and irritable bowel syndrome that kept him from sleeping and worsened over time. He searched online for natural relief for tremors and read accounts of people successfully treating their PD symptoms with different forms of cannabis. “I tried a little and was amazed at the effect it had,” he said The U.K. has approved one cannabis-based treatment as a prescription medication for multiple sclerosis, called Sativex, but marijuana itself is not legal as a treatment for PD or other conditions. The U.S. FDA has not recognized or approved marijuana as medicine and says the purity and potency of …

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Virtual house calls? Dr. Ray Dorsey’s promising research on telemedicine for Parkinson’s disease

What if your next doctor’s appointment involved just booting up your laptop rather than trekking to a clinic or office? Neurologist Ray Dorsey, M.D., M.B.A., is making virtual house calls a reality for people with Parkinson’s disease (PD) and believes “telemedicine” is on the brink of transforming healthcare. “There’s a huge demand for more convenient care,” he says. What’s telemedicine? Why does it work for PD? Telemedicine, also called telehealth, is the delivery of healthcare remotely via phone, smartphone, mobile wireless device or other tools with or without a video connection. Dr. Dorsey, a professor of neurology and the director of the Center for Health and Technology at the University of Rochester Medical Center, has been studying and providing telemedicine for more than a decade – starting with people with PD in a nursing home in a remote part of Central New York. He says virtual visits work particularly well for PD because it’s a visually-assessed condition. Also, due to geography, physical limitations and other factors, more than 40 percent of people with PD do not see a neurologist – putting them at greater risk for falls, hip fractures and other complications – so there’s ample opportunity to improve care. …

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“It gives me a source of hope”: Gloria’s 9+ years of tracking Parkinson’s disease and making connections on PatientsLikeMe

Member Gloria (sunshine221) has been here almost since the start. The Parkinson’s Disease (PD) community on PatientsLikeMe launched in 2007, and Gloria joined in 2008. We recently caught up with her about her early days with PD, how she has used PatientsLikeMe through the years and what she’s up to now. Early days with PD and finding PatientsLikeMe Gloria had been dealing with walking problems for four years, and was initially diagnosed with spinal stenosis. After having surgery for that, she was diagnosed with PD. She had to shift gears, in terms of finding support online. “Another web board that I was using was great for the spinal stenosis but their Parkinson’s section was inactive,” she says.   “I liked PatientsLikeMe’s tracking sections and how it matched with what the doctors were asking.”   Gloria notes that HIPAA laws made it harder for doctors to connect patients with each other, so meeting people with PD online (and in in-person support groups) was key. “PatientsLikeMe lets me share with people of similar age and illness progression, and when I might be feeling discouraged it gives me a source of hope,” she says. Using PatientsLikeMe through the years Early on, Gloria turned …

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“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Member Lisa (lcs), a Team of Advisors alum who’s living with Parkinson’s disease, has found her advocacy niche: involving patients in drug development. Diagnosed with PD in 2008, Lisa served as a patient thought leader and co-author of a published journal article called “Increasing Patient Involvement in Drug Development.” She worked on the publication along with Maria Lowe, Pharm.D. – a health data and drug information clinical specialist at PatientsLikeMe – and other pharmacists and Ph.D.s. “I hold my co-authors in the highest regard,” Lisa says. “That said, not one of them was a person with an incurable, progressive neurodegenerative disease. My expertise is as a person with Parkinson’s.”   Maria says that having a patient co-author was “crucial” to the publication. “We wanted to look at how drug developers were incorporating patients into drug development activities and recommend some best practices,” Maria says. “How could we possibly do this without ensuring we were representing what matters to patients?” The value of partnering with patients In addition to teaming up on the research paper, Lisa and Maria also both participated in a webcast on April 12 on PDUFA VI and the Patient Voice. PDUFA stands for the Prescription Drug User …

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Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)

It’s Parkinson’s Awareness Month, and we’re continuing to find meaningful stories in the world of PD. Did you tune into our recent podcast featuring Pamela Quinn – a professional dancer who’s living with Parkinson’s? She teaches dance classes in New York City for people with PD. Now, she’s taking her dance and movement tips to a broader audience online in a cool new blog (psst – Rolling Stones fans, read on…)! Some members have noted in the PatientsLikeMe PD forum that they’ve attended and benefited from dance classes for people with PD (even ones that reference Pam’s teachings!). But what if you have PD and live where classes like this aren’t available – or if dance classes just aren’t up your alley? Check out Pam’s blog, PD Movement Lab. Songs to step to Pam uses visuals, like photos and videos, in a series of mini-lessons for moving and walking with PD. In one of her first posts, she shows how walking to music can improve Parkinson‘s gait, and offers a playlist of her favorite songs to walk to at varying tempos, including: “Fever,” Peggy Lee (68 beats per minute) “Clarinet Concerto in A Major,” Mozart (94 bpm) “Moon Rocks,” Talking …

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World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD

Today is World Parkinson’s Day, and 2017 marks the 200th anniversary of the identification of Parkinson’s Disease (PD). Meet Eileen Mack Thorley, a research scientist with a passion for PD research. By day, she works on a variety of research projects at PatientsLikeMe. On her own time, you might find her doing FaceTime with her dad to help him practice his physical therapy exercises for living with Parkinson’s. He was diagnosed with PD more than 10 years ago. Eileen said her father’s PD diagnosis inspired her to get involved with the Team Fox Foundation Young Professionals of Boston (part of the Michael J. Fox Foundation), and ultimately led her to venture into PD research as part of her day job. Eileen has a master’s degree in public health and specializes in epidemiology, data analysis and public health research. She has been working in the field for 8 years, previously focusing on the areas of substance abuse and maternal and child health. “Where I want to be now is focusing on Parkinson’s research and community health – living with the disease and bringing the patient experience into research,” Eileen said. In addition to a focus on traditional medical breakthroughs in Parkinson’s …

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Checking in with member Bev – “Laughter and comedy are still a huge part of my health management.”

Remember Bev (YumaBev), who we met back in 2012, after she’d just had deep brain stimulation (DBS) surgery? She told us about her blog Parkinson’s Humor and a book of stories from her blog, Parkinson’s Humor: Funny Stories about My Life with Parkinson’s. Well we recently caught up with her again to see how things have been going since we last spoke. Check out the latest with Bev to see what she had to say about being an eternal optimist, connecting with other “Parkies” and the power of laughter. It’s been a while (4 years) since we last caught up! How have things been going? The last time we spoke, I had just had the first part of my DBS surgery. The surgery was an eventual success, but I had some minor complications. The skin on my scalp was so thin, it pulled apart where it was sutured. There was never any infection, but it did require several surgeries and a plastic surgeon to finally get my scalp to stay closed and heal properly. Right in the middle of all these scalp surgeries, I was diagnosed with breast cancer and the tumor was just below my DBS generator, so that …

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Meet Gary from the PatientsLikeMe Team of Advisors

Meet Gary (tupelo), a husband, father and grandfather who lives with Parkinson’s disease. Gary’s also a member of the 2016-2017 Team of Advisors. He believes that physical exercise slows the progression of Parkinson’s and practices Tai Chi and Qigong on a regular basis. Check out Gary’s story and his outlook on life with Parkinson’s: “Accepting your condition doesn’t mean you must resign yourself to it.”  What gives you the greatest joy and puts a smile on your face? There are many things that give me joy in life. In my personal life, I love sports, reading a good book and drinking a glass of good wine.  In my professional life, I’m motivated by taking on the challenge of new opportunities, taking an idea and creating a business around it, or public speaking. However, nothing gives me more joy in my life than my family. They are the reason I push myself so hard to understand all there is to know about Parkinson’s Disease while searching for a way to stop or slow the progression. My phone, my computer and my desk all contain pictures of my two young grandsons.  That’s what brings a smile to my face each day. How …

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PatientsLikeMe Welcomes Next Patient Team of Advisors

  CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.” More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington. John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and …

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