Parkinson’s Disease

Early Signs of Parkinson’s Disease

One day, you’re relaxing on the couch and notice your hand is shaking. Has it always done that, or is it new? But when you go to pick something up, you notice the shaking stops. You may have noticed other minor changes like your movement is slowing down or your limbs feel unusually stiff. You could pass all of these instances off as being dehydrated or needing more sleep, but these symptoms put together could be early indicators of Parkinson’s disease.   What is Parkinson’s disease?  Parkinson’s disease is a chronic neurodegenerative condition that is caused by damage to nerve cells in the substantia nigra, the area of the brain that controls movement. The disease is progressive, meaning the symptoms generally develop slowly over the course of several years. Because the disease is so diverse, not every person with Parkinson’s will experience the same progression of symptoms as others. Scientists believe that Parkinson’s is caused by certain genetic and environmental factors.   Symptoms of Parkinson’s usually start appearing in middle or late life. Because a diagnosis can take months, or even years, it’s not usually diagnosed until age 60. A diagnosis younger than 50 is called young-onset Parkinson’s. Nearly one million people in the United States have Parkinson’s disease, and about 60,000 Americans …

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Prevention of Parkinson's Disease - Parkinson's Freezing

Parkinson’s Freezing Triggers and Fall Prevention

Gait freezing and falls are common among people with Parkinson’s disease (PD). Take a closer look at patients’ experiences, common triggers of freezing and tips that may help prevent falls. What is known about freezing and falls? Researchers and movement experts have been studying gait freezing in people with PD for several decades. The exact cause of freezing is unknown, but experts believe it’s caused by PD’s effects on parts of the brain that control motor movement, such as the basal ganglia or part of the right side of the brain. Common triggers of gait freezing may include: Crowded environments or tight spaces Turning corners, going around furniture or objects, or changing direction Entering doorways, crossing over thresholds (especially from outdoors to inside), or changes in flooring (for example, from tile or wood to carpet) Distraction or multi-tasking, such as walking and talking or carrying objects Anxiety (initial research shows that this common symptom in people with PD may play a role in freezing, but further studies are needed) Some tips and tricks may help “thaw” episodes of freezing (but every person is different, so talk with a movement specialist or physical therapist about what might work for you): Visual cues — Giving yourself a visual hint …

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A possible Parkinson’s disease/melanoma link? Time for a skin check

Now that summer has passed, have you had your skin examined? Studies have shown that people with Parkinson’s disease (PD) may have an increased risk for melanoma, so skin screenings are extra-important. Take a look at recent research and get some tips on monitoring your moles and skin. Studies show… A 2017 Mayo Clinic study found that people with either PD or melanoma are four times as likely to receive a diagnosis of the other disease. The researchers say the PD drug levodopa (which some people believe may play a role in melanoma risk) is not likely a factor in the PD/melanoma connection, according to McKnight’s. They found that the majority of melanomas were diagnosed before the diagnosis or treatment of Parkinson’s disease, so taking levodopa doesn’t appear to be a risk factor. Future research should focus on genes, immune responses and environmental exposures that could cause the relationship, the researchers say. Know your “ABCDEs” Check out the Skin Cancer Foundation’s “ABCDEs of Melanoma” (click here to see images of examples), and make an appointment right away if you spot any of these warning signs: A = asymmetry. Malignant moles tend to have an odd shape. B = border. The edges of an early melanoma may be …

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Driving with Parkinson’s disease: Safety considerations + turning over the keys

Are you still driving with Parkinson’s disease? Check out some safety considerations and pointers for determining if it’s time to turn over the keys. Plus, explore how others with PD have handled this tricky topic and see some alternate ways of getting around. Considerations for driving with PD + 7 questions to ask yourself “You will likely be able to drive safely and legally for several years, depending on your age and general physical condition,” according to the Michael J. Fox Foundation. “However, Parkinson’s disease eventually affects reaction time, ability to handle multiple tasks, vision and judgment.” Everyone with PD is living with their own mix of motor and non-motor symptoms, rate of disease progression, and reaction to medication (such as levodopa “ons and offs”) — all of which can affect driving abilities. There are currently no set guidelines for neurologists to determine someone’s fitness to drive, so doctors consider patients’ skills and symptoms on a case-by-case basis, according to ParkinsonsDisease.net. They recommend considering these questions to help determine if you’re still fit to drive: How is my vision? Can I see well at night? Can I distinguish colors, such as in traffic lights? Would I be putting my passenger (friend or loved …

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Drenching Night Sweats - Parkinson's Sweat

Parkinson’s Disease and Drenching Night Sweats? Solutions!

PatientsLikeMe members with Parkinson’s disease (PD) have talked a lot about excessive sweating (aka hyperhidrosis) and heat intolerance with Parkinson’s disease. It can be a “stinker,” as one blogger who has PD recently shared in Parkinson’s News Today. Can you relate? Read on for more information and some possible adjustments or life hacks that others have tried. One study found that over 60% of patients with PD experience sweating disturbances like hyperhidrosis (over-secretion of sweat) or hypohydrosis (under-secretion of sweat, which is less common). The Parkinson’s Foundation and Parkinson’s Victoria cover these issues in their guides to skin, scalp and sweat changes related to PD. In addition to hyperhidrosis, many people with PD experience an extra-oily scalp (or other parts of the body), drenching night sweats and general difficulty with temperature control. Some of these problems may stem from PD itself, which affects some of the body’s automatic functions, such as blood pressure and temperature regulation. Research has shown that hyperhidrosis also seems to occur along with “off” times in levodopa treatment and with dyskinesia (jerky movements without tremors). Possible solutions and hacks Maria De Leon, M.D., a neurologist with young onset PD, writes on her blog that she understands firsthand the impact that sweating (and related body odor) issues can have on people’s lives. A few …

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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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“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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