Parkinson’s Disease

Parkisnon's Speech

Let’s talk: Parkinson’s disease, speech changes + communication issues

Parkinson’s disease can cause your voice to become raspy, quiet or unsteady, and motor symptoms can make writing and typing more difficult. Have you experienced communication issues like these? See what others have tried — from Lee Silverman Voice Treatment and voice-activated “smart” devices to (drumroll please…) singing classes. How PD can impact communication Parkinson’s affects the part of the brain and nerves that control speech and oral/facial movement. ParkinsonsDisease.net says PD may cause: Softer, breathy, or hoarse voice Slurred speech Mumbling or rapid speech Monotone voice, lacking the normal ups and downs Slower speech because of difficulty finding the right words Trouble participating in fast-paced conversations. They also break down the medical terms related to these speech symptoms: Dysarthria — A motor speech disorder or impairment in speaking due to PD affecting the muscles required for speech Hypophonia — Soft speech or an abnormally weak voice caused by the weakening muscles Tachyphemia — Also known as “cluttering,” this is characterized by excessively fast talking and rapid stammering that can be difficult to understand In addition, people with PD may experience tremor, rigidity and dystonia or cramping, which can make writing and typing difficult. Research has shown that about half of people with PD have micrographia (small, cramped handwriting). Treatments …

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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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Health news: What’s making headlines in June

In case you missed it, check out this round up of some of the stories making headlines in June…   Parkinson’s disease: Apple Watch will now be able to monitor PD: Tech developers announced this month that the Apple Watch will now be able to track two common PD symptoms — tremors and dyskinesia — and map them out in graphs to help doctors (and patients) with PD monitoring. Fill me in. Study points to an “overlooked driver” of PD — Bacteriophages: What are bacteriophages or “phages”? Viruses that infect bacteria. New research shows that people with PD may have an overabundance of phages that kill “good” bacteria in the microbiome or gut, which could mean a new target for treating PD. More on the study. Lupus: How common are cognitive issues with lupus? Very. A doctor specializing in lupus research says nearly 40% of people with SLE have some level of cognitive impairment, such as trouble with attention, recall and concentration — so doctors should monitor it early and often. Read his Q&A. Lung cancer: Drug may replace chemo as initial treatment for many with NSCLC: New clinical trial results of the immunotherapy drug Keytruda show that it can be a more effective first treatment than chemotherapy for …

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Parkinson’s disease + anxiety/depression: Stigma-busting for Mental Health Month

Stress. Anxiety. Depression. Have you experienced any of these along with Parkinson’s disease (PD)? As National Mental Health Month comes to a close, we’re highlighting how common these non-motor symptoms and mental health issues are among people with PD. Plus, see some new research on the prevalence of feeling demoralized (vs. depressed) with PD, and explore how members of the PatientsLikeMe community try to manage their mental health. Research shows that the vast majority of people with PD have non-motor symptoms (NMS) — with psychiatric symptoms (like anxiety, depression and psychosis) accounting for 60 percent of NMS in one large-scale study. “That’s why taking action is important,” says Andrew Ridder, M.D., a movement disorders specialist at Michigan Health. “If you or a loved one has had a new diagnosis of Parkinson’s disease, we recommend an immediate evaluation for depression, mood and cognitive problems. Frequent monitoring should also be done throughout the course of the disease.” Dr. Ridder cites some key stats: About 5 to 40 percent of people with Parkinson’s disease have a clinical diagnosis of anxiety Between 17 to 50 percent of patients with Parkinson’s have depression “Anxious mood” and “depressed mood” are commonly reported symptoms of PD on PatientsLikeMe. Hundreds of members have reported a diagnosis of PD …

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Cannabidiol (CBD) oil and product FAQs: Fad or effective? Legal or not?

Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and Drug Administration (FDA) unanimously recommended a medication made from CBD for some forms of epilepsy. CBD comes from cannabis/marijuana but has some key differences. So, let’s take a closer look at CBD products and some FAQs, like, do they work and are they legal? What is CBD? Short answer: Cannabidiol (pronounced canna-bid-EYE-ol) or CBD is a chemical found in cannabis plants that does not produce a “high.” More info: Cannabis plants can produce more than 100 different types of cannabinoids, a type of chemical that reacts with receptors in the brain. The two most common cannabinoids found in medical marijuana are THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). THC is responsible for producing the mental and physical effects of medical marijuana. CBD has many of the same therapeutic qualities as THC, but without psychoactive effects. (For even more info, read our report called “Weed 101: How and why patients use medical marijuana.”) …

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Spill the beans: How do caffeine and Parkinson’s disease interact?

Do you crave that cup (or more) of joe each day? Or a spot of tea or chunk of chocolate? Research about caffeine and Parkinson’s disease (PD) has been all over the map. What have studies shown? And what’s the PatientsLikeMe community’s take on caffeine and its effects when you’re living with PD? Take a peek. Mixed findings on symptom relief Past research showing that moderate caffeine intake may help protect against PD (particularly in men) has turned on a steady drip of studies about other caffeine/PD connections or interactions. A small-scale 2012 study published in the journal Neurology found that moderate amounts of caffeine may help improve motor symptoms of Parkinson’s disease. But the study was relatively short (three weeks) and small (61 patients), so researchers concluded that there should be a larger long-term trial on caffeine and PD. The lead researcher, Ronald Postuma, M.D. (an associate professor of neurology at McGill University Health Center in Montreal), conducted a follow-up study on a larger scale — involving 121 participants for up to 18 months — and the results of the September 2017 study did not uphold the findings of the 2012 study. “Caffeine made no difference to Parkinson’s,” he says, noting that the results of the …

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Health news: What’s making headlines this month

Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May. ALS May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how you can get involved and join the fight against ALS. Congress passes $3 billion increase in NIH funding: $140 million of the increase will go to the BRAIN Initiative research projects that contribute to the knowledge and understanding of ALS. More info. Lupus May is Lupus Awareness Month: Nearly two-thirds of people know little or nothing about lupus beyond the name, according to the Lupus Foundation of America, which is promoting the “Go Purple” campaign. Get ideas for boosting awareness. A link between the “mono” virus and lupus? A new study published in Nature Genetics shows that the Epstein-Barr virus (EBV) — known for causing mononucleosis — may increase the risk of lupus and six other autoimmune diseases by changing how some genes are expressed. Check it out. Parkinson’s Disease “Suspect” Parkinson’s drug faces scrutiny: Following reports of hundreds of deaths and adverse events, the FDA is re-examining the safety of Nuplazid (pimavanserin), which …

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Deep brain stimulation (DBS) by the numbers, 30 years in

Now that deep-brain stimulation (DBS) — a groundbreaking treatment for Parkinson’s disease — has been around for just over 30 years in the U.S., check out some stats and data about it. Plus, see how many members of the PatientsLikeMe community have had DBS and what they’ve said about it. What is DBS and how does it work? DBS is a procedure that uses a surgically implanted, battery-operated device called an implantable pulse generator (IPG) — similar to a heart pacemaker and about the size of a stopwatch. The IPG delivers electrical stimulation to specific areas in the brain that control movement, blocking the abnormal nerve signals that cause Parkinson’s disease (PD) symptoms. Take a look at some key dates, stats and facts related to DBS: 1987 – the year that French neurosurgeon Dr. Alim-Louis Benabid developed modern DBS 1997 – the year that the Food and Drug Administration (FDA) approved DBS in the U.S. 100,000+ – the number of people who’ve had DBS surgery $35,000 to $50,000 – the cost of DBS surgery (bilateral procedures may cost upwards of $70,000 to $100,000); Medicare and most private insurance carriers will cover most, if not all, of the costs of the operation, according to the …

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Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship

What’s it like dating and starting a relationship when one of you has a chronic condition? Just ask our blog partners Karl and Angela Robb, who’ve been together for 22 years and married for 21 years. Karl has been living with young-onset Parkinson’s disease (PD) for more than 30 years. He and 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. Here’s their take on dating and relationships. From Karl’s perspective… Imagine dating in the early dawn of the internet along with a diagnosis of a neurological disorder. As if I didn’t have enough obstacles in my life, now I had to explain to my dates that I had early-onset Parkinson’s disease. Now, I came with a “warning label.” The challenges of dating, connecting, and finding someone who could look beyond my illness would take a miracle — or so I thought. Admittedly, in my late 20s and showing signs of Parkinson’s disease (mild shaking, involuntary movement, stiffness, gait issues, and mild speech impairment), I didn’t see myself as a gem, but I still felt that I could be a loving and compatible mate. I knew that finding …

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What products help people live better with Parkinson’s disease? A room-by-room round-up

Over the years, PatientsLikeMe members living with Parkinson’s disease have discussed a lot of products and ideas for living better with PD. From kitchen knives and eating utensils to shoe horns and shoelaces, we’ve compiled a list of tools you’ve talked about for (almost) every room in the house and many different aspects of life. Check it out, and join the community to chime in with your own favorites. In the kitchen A “rocker knife,” also known as an “ulu” or a “mezzaluna” knife “works great for chopping/slicing veggies, fruits, cheeses, etc.” and a “large-blade pizza cutter is great for cutting pancakes/waffles very quickly,” one member says With a food chopper, like those sold by The Pampered Chef, “I can chop onions, peppers, garlic in no time,” another member says Others have mentioned weighted utensils and kitchen utensils specifically designed for people with PD Multiple members have also discussed drinking cups with lids and straws (for both cold and hot drinks) to help prevent spills and gagging/choking In the bathroom Biotene toothpaste or mouthwash “helps with dry mouth caused by meds” A raised toilet seat and a stool at the bathroom counter can be helpful, as well as a walk-in shower, if possible, some …

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