Joined January 2012
I stand in front of my aunt, who just lost all her children, trying to find words that can comfort her. I hold back my tears and anger in front of her, but I want to break down with her.
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Here's a new illustration of 'What Parkinson's Feels Like'. "When unmedicated or some days even medicated - Parkinson's feels like I'm walking through wet cement." Lisa Harris-Murphey
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Sir Isaac Newton discovered gravitational theory in 1666. Albert Einstein discoverer the theory of general relativity in 1915. Carl Beech @plantsbloke has had his eureka moment in 2024. Amazing 🤩 He may have just changed the projection of #Parkinsons 👏🏻 👏🏻 👏🏻
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For the past few years, I’ve lived the thrill of a lifetime working with the team at @natgeo. Last week brought more deep cuts. This time I was on the list. Time to take a breath and figure out what’s next, but first I want to celebrate the amazing work I’ve gotten to do here: 🧵
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“We at Parkinson’s Ireland feel that at EU level, a similar plan should be adopted to end Parkinson’s. Such an act would create measurable objectives and would in turn be another way to hold key decision makers to account,” said Shane O’Brien, CEO of Parkinson’s Ireland
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🚨 Call for submissions! 📖 Artist @SalsbergMathews is creating a #Parkinsons comic book called "What Parkinson’s Feels Like". This image is one example. She needs YOUR descriptions of what #Parkinson's feels like - comment below! 👇 👉 Read more: buff.ly/3WTe9BN
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New review paper just out today @NEJM on Parkinson's disease by Professors @JillOstremUCSF and Carlie Tanner @UCSFHospitals. Check out the gems they include like this chart of all the current medication options. I added the 'hot' new article sign as we presented in Aspen @movedisorder this morning. A great read. nejm.org/doi/full/10.1056/NE… #Parkinsons @ParkinsonDotOrg #fixelinstitute
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The DBS field is changing, and soon we will be deliberating targeting the circuit, rather than pointing at a simple grey matter target. In fact, several folks have already shifted in this direction, such as in this recent paper by @EMiddlebrooksMD and colleagues. Nice discussion today @movedisorder Aspen.
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Want a comprehensive table summarizing the treatment of non-motor Parkinson's symptoms, look no further than this article just out @NEJM by Tanner and @JillOstremUCSF. #Parkinsons
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Can you prevent Parkinson's disease with exercise? Not so sure, however Oosterhof, Darweesh, Bloem and de Vries, take on this 'what if' scenario in @journal_PD and they think through what a clinical trial may look like in the future. Who would you include? Key Points: - The authors argue that it a 'high priority for finding interventions to delay or even prevent the onset of Parkinson's.' - They argue the converging evidence that exercise 'may exert disease-modifying effects in people with clinically manifest PD.' - Could it be preventative in the prodromal phase? - What if we designed trials to prevent Parkinson's through exercise? My take: As a history buff, I love to think about 'what if' scenarios. I really like their construct of thinking about who could benefit, and what may be the risks. I do think that we are not yet close to understanding how exercise may exert 'disease-modifying effects.' How would you blind the trial? How would you handle compliance? Who would pay for a longitudinal study and how easy would it be to recruit the subjects? If you are going to go there, then you must dare to ask key questions. Who would you include? Folks w/ prodromal manifestations? Non-manifest mutation carriers? Environmental exposures? Others? content.iospress.com/article… #Parkinsons #exercise #fixelinstitute
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studiosree retweeted
Who are Indians descended from? Aryans from Europe? Dravidians who've been "here" forever? The Indus valley civilization? A controversial question for 150+ years, but now we have DNA evidence that answers these questions with a high degree of certainty. 🧵
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“..reviews of clinical trials have found levels of reported patient involvement ranging from less than 1% to 18% of identified trials..1/3
In this Viewpoint, @StuartGNicholl1 and @MarionKCampbell discuss the need to include patient and health care professional perspectives in the design of clinical trials to improve trial features and implementation. #JAMASummit ja.ma/3RTFCBz
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#Parkinsons is a 24 hour disease, there is no real reprieve from the symptoms. Managing those nocturnal and sleep symptoms is impt for quality of life. Thought I would share my personal experience unshakeablemd.com/post/can-t…
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I am totally honoured to be asked to present on how diet & nutrition can improve life with Parkinson’s & to be the first person living with PD to deliver this renowned Edinburgh Parkinsons lecture. @trust_indi @BDA_Dietitians @FionaLithander @DrISubramanian @efad_org
📢Booking is open for the Edinburgh Parkinson's Lecture - 17th Sept. This year, is the amazing @RichelleFlan talking about how nutrition & diet can help you live better with Parkinson’s. @parkinsonEN @ParkinsonsUKSco @ParkinsonsENEx @NoSPRIG edinburghparkinsons.org/edin…
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🚨BREAKING! Thousands of people are marching into Times Square on this historic July 4th to demand an END to the US funded and supported genocide in Palestine. SHUT IT DOWN FOR PALESTINE! #shutitdown4palestine #freepalestine
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A new study explores if exercise changes how the body processes levodopa in patients at different stages of #Parkinsons; No diff.s in how the body processed levodopa; Worsening of symptoms in advanced PD after exercise not due to changes in L-dopa levels content.iospress.com/article…
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Anecdotal observations by people with #Parkinsons visiting higher altitudes have reported experiencing symptomatic benefit. Now, @basbloem et al present the study rationale & protocol for a randomized controlled trial of intermittent hypoxia in PD bmcneurol.biomedcentral.com/…
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“Rather than just focusing on a bit of the puzzle-the older, white male-we want to look at all the cogs, regardless of age or gender, & we want the world to step back & take a wider look at how we perceive Parkinson's...” 🙌@Dr_SF_Hussain @MicheleCallisa1 @janealty1
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"More than 150 years after the first major wave of Asian immigration to the United States, knowledge of #AAPI history across the country is severely lacking and needs to be addressed." @aapiyouthrising @HealthierGen ethnicmediaservices.org/stop…
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Well, it finally happened! My Parkinson's Humor blog reached ONE MILLION PAGE VIEWS! I remember being so excited when it got to 1,000. Thank you to everyone around the world who took time to read my stories.
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