This is the first time I’ve experienced #dyskinesia where it feels like my stomach and abdominal muscles are twisting like the snakes on Medusa’s head. It is incredibly exhausting and painful. This might be my journey to get that flat belly six-pack! #yopd #Parkinsonsdisease

Just when my dyskinesia stops, I need to take another pill. It’s been rough today. Nonstop dancing, as a family member likes to call it. I wish it looked as elegant as that. At least I could perform somewhere. #youngonsetpd #yopd #parkinsonsdisease

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.

Was Instagram’s great app update changing the order of posts, followers, and following or is that just a weird bug? Because if it’s the former, I really wonder what their thought process was.

Someone please tell me that it’s not just me. That data clean up is really tedious and time consuming. Especially data migration. Let’s not even get into systems and structures yet. And if it is me, please bring me some wine. And shots. And chocolate. And strawberries.

At least I know it’s not me. As much as I have concerns over this platform it is still the first place I go to for up to date information on any news.

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

I accidentally picked up the wrong pill and took CL ER 90 minutes earlier than needed. I’m already very dyskinetic for me. And I have a work meeting in 1 hour. This is where I could use a magic eraser. #yopd #parkinsons #dyskinesia

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 👏🏻 👏🏻 👏🏻

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: 🧵

“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

🚨 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

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

It’s been a while. But I gotta post about Day 2 of #SealeyChallenge #sealeychallenge2024. Spent my time with Amorisco by Khaled Mattawa. A complex, evocative book of poems with so much meaning. Thankfully, it had a notes section in the back. #reading #poems

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.

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

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

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. 🧵

“..reviews of clinical trials have found levels of reported patient involvement ranging from less than 1% to 18% of identified trials..1/3

Curious if there’s a well known novelist, or maybe layout designer/typesetter/publisher that wrote or published anything #ADHD #executivedysfunction friendly for the visual overwhelm that is text on a page? #yopd #parkinsonsdisease