parkinson’s

Illustrating member perspectives on life with chronic illness

In medical terms, most health conditions have clear definitions. But only people living with chronic illness know what it really feels like to live with it — and making others understand can be a challenge. When we asked some PatientsLikeMe members to explain what life was like with their condition, their responses painted vivid pictures of what they’re going through. So, we asked PatientsLikeMe User Experience Designer Kristina Ng to turn those descriptions into illustrations. Depicting life with lupus, multiple sclerosis, mental health and more, Kristina’s illustrations sparked a discussion in the PatientsLikeMe community. Battling cluelessness and confusion Member Tommy Dubuque was diagnosed with Parkinson’s disease in October 2002, though he’d been experiencing symptoms long before that. “I first noticed symptoms in the mid 1990’s. My youngest daughter told my wife that sometimes my hand would shake. It was getting harder for me to get out of chairs and get up from the ground if I was doing yard work. I just attributed it to old age and not taking care of myself as a young man.” Tommy was forced to retire in 2006, but that didn’t stop him from staying physically active. “I began physically working hard around our property.” He …

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Practicing Reiki and Qigong with Parkinson’s disease: Karl Robb shares the benefits of these complementary therapies

What kinds of complementary treatments can help people with Parkinson’s disease (PD)? PatientsLikeMe blog partner Karl Robb recently shared with us about his complementary therapies of choice: Reiki and Qigong. Karl has been living with young-onset PD for more than 30 years and practicing Reiki for nearly 20 years. He and his wife, Angela, are the couple behind the PD blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and authors of two books. Karl – who went from “huge skeptic” to Reiki master and Qigong practitioner – acknowledges that practices like these may sound “too far out” at first, but he breaks down which symptoms they’ve helped him manage (along with taking prescribed treatments). Can you fill us in about Reiki and its potential benefits? Simply put, Reiki is a very old complementary therapy that can assist the body to help itself through light touch. Reiki incorporates the use of the energy that is all around us. Reiki involves the placement of hands on different areas of the body to direct energy to release tension, reduce stress, lessen discomfort, and enhance well-being. A trained Reiki practitioner learns to transfer this universal energy through his …

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From tomatoes to turmeric: Can foods fight inflammation?

Inflammation is a hot topic. What’s it all about? And what’s the scoop on certain diets, foods and supplements, such as turmeric, when it comes to fighting inflammation? What is inflammation? Not all inflammation is “bad.” Acute inflammation is part of the body’s natural way of defending itself from foreign substances like viruses, bacteria, cuts and splinters. It may cause redness, swelling, heat and/or pain. The upside is, these symptoms are a sign that the body is responding after an injury or infection by triggering white blood cells and disease-fighting chemicals. But some “other” kinds of inflammation — like chronic inflammation (which may include constant low-grade or systemic inflammation) and inflammation from autoimmune disorders (where the body attacks its own healthy cells as if they’re foreign) — doesn’t always show visible or obvious symptoms and can play a more long-term and complex role, according to Mayo Clinic. Which diseases or conditions does it affect? Mounting research shows that inflammation is a common underlying factor (and possibly a cause) in many — perhaps even all — diseases. You’ve probably heard about the role of inflammation in arthritis or heart health. But researchers and doctors have also studied inflammation’s link to a wide range of other diseases and conditions, including cancer, diabetes, Alzheimer’s …

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“Dealing and healing” together: Karl and Angela Robb team up with PatientsLikeMe and share about living with young-onset Parkinson’s disease

PatientsLikeMe is pleased to announce a new collaboration with Karl and Angela Robb, the husband-and-wife team behind Karl’s blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and the authors of two books. You might’ve already seen Karl’s #MoreThan story. Karl and Angela recently shared even more with us in a Q&A about Karl’s diagnosis with young-onset PD, living 30+ years with the condition, and maintaining a strong relationship and an award-winning blog, to boot. Stay tuned for guest blog posts by Karl and Angela as part of this collaboration! Your blog’s name – and much of its content – reflect your appreciation for calm, peace and quiet, especially in the pursuit of “dealing and healing” with PD. How did you arrive at a peaceful outlook after being diagnosed at a young age with a serious condition?  Symptoms began in my teens. My diagnosis for Parkinson’s disease came about six years and eight or nine doctors later. Knowing hardly anything about Parkinson’s disease at age 17, I was sure that I had a brain tumor. I prepared myself for the worst possible outcome and made the decision that whatever the result may be, I was …

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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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