Since I can’t seem to coax Gavin over here I will direct you to his blog. The closest thing to Parky Yoda I have met #parkinsons yourmove.fitness/blog/f/up-si...

Up-side to Down

Having now spent almost 1/3 of my life with Parkinson’s, I feel like I’m finally understanding how to turn this mutha’ ***** on its head. Well, sometimes anyway.

yourmove.fitness

youtube.com/watch?v=_dD5... Still my favorite video on vibrotactile😆 #parkinsons

Ellen Bookman , a person with Parkinson’s,writes a beautiful letter to her daughter www.keepfngoing.com/post/a-lette...

A Letter to my daughter.

Parkinson's is a challenging journey, both for me and for those who love me..

keepfngoing.com

#NIH cuts by #DOGE

Alt NIH Bluesky 🧪@altnih4science.bsky.social · 2y ago

The thing about destroying NIH is NIH’s scale in medical research just dwarfs everyone else. For ex, in 2023 the American Cancer Society gave out $64.5 million worth of grants. Sounds big, right? But NIH’s budget was $49 billion. With a B. Kill NIH and the floor drops out of US science.

A man genetically destined to develop early Alzheimer's… doesn’t. Why? A Nature study explores possible explanations: tau pathology limited to the occipital region, significant heat exposure, and a proteomic profile rich in heat shock proteins. Anything else? (1/4) 🔗 www.nature.com/articles/s41...

Longitudinal analysis of a dominantly inherited Alzheimer disease mutation carrier protected from dementia - Nature Medicine

A rare case of asymptomatic dominantly inherited Alzheimer’s reveals confined tau pathology and unique proteomic features, highlighting potential resilience mechanisms decades beyond expected onset.

nature.com

I can handle my own spirituality thx. Go do Health stuff plz🤨 #hhs #parkinsons

Critical:

Happy Valentine’s Day! Check out the first episode of the newest season of the Young Onst Parkinson’s Network’s Podcast “Living Well Starts Here” where Melissa Livingston and me talk about sex, intimacy & relationships with #parkinsonsdisease #yopd yopn.podbean.com/e/navigating...

Join us online next Wednesday for a webinar on Impulse Control Disorders: Understanding & Managing the Challenges. This webinar will explore what causes Impulse Control Disorders, how to manage them, & practical tools to support those impacted. Register for free: Parkinson.org/events/2025/Feb19WW

Impulse Control Disorders: Understanding and Managing the Challenges

This webinar will explore what causes ICDs, how to manage them, and practical tools to support those impacted.

parkinson.org

Check out our latest podcast episode, featuring Melissa Grassia Chisholm, MS, CCC-SLP. In this episode, she explains how speech & swallowing problems can develop in people with Parkinson's & discusses diagnostic procedures, therapies, and programs that can help improve speech & swallowing. (1/2)

For someone who generally has a lot to say I am at a loss for words. Here’s some flowers #parkinsonsdisease

Rebecca Wallings, PhD, is leveraging her Parkinson’s Foundation Launch Award to investigate how aging impairs a type of immune cell outside the brain — & how this impairment impacts the development of PD. 🔬 Learn more about Dr. Wallings & her research: Parkinson.org/blog/research/meet-dr-wallings

Meet a Researcher Studying How Boosting Immune Cells Could Lead to a Preventative Parkinson’s Therapy

There is a lot to know about Parkinson's disease. Learn about symptoms, how it is diagnosed and what treatment options are available.

parkinson.org

🚨BREAKING. From a program officer at the National Science Foundation, a list of keywords that can cause a grant to be pulled. I will be sharing screenshots of these keywords along with a decision tree. Please share widely. This is a crisis for academic freedom & science.

“The Good Addiction “ open.substack.com/pub/shakingi...

www.theguardian.com/society/2025...

The mind/body revolution: how the division between ‘mental’ and ‘physical’ illness fails us all

New research shows western medicine’s traditional split between brain and body is, in fact, far from clear cut – and could provide a breakthrough for many complex conditions

theguardian.com

Here is a guide to what a + α-synuclein seed amplification assay (αSyn-SAA) means for Parkinson’s. ✅ Confirms a clinical diagnosis ❌ Cannot diagnose asymptomatic people ❌ Doesn’t define PD biologically ❌ Can’t stage, predict progression, or monitor treatment (1/2) www.prd-journal.com/article/S135...

The α-synuclein seed amplification assay: Interpreting a test of Parkinson's pathology

The α-synuclein seed amplification assay (αSyn-SAA) sensitively detects Lewy pathology, the amyloid state of α-synuclein, in the cerebrospinal fluid (CSF) of patients with Parkinson's disease (PD). Th...

prd-journal.com

My thoughts on Anger and Parkinson’s open.substack.com/pub/shakingi...

Thank you @drisubramanian.bsky.social for raising awareness on the stigma we face as people with Parkinson’s. As always you are a shining example of what collaboration is🌷 @alliesiggy.bsky.social as always 👏👏

Dr Indu Subramanian@drisubramanian.bsky.social · 2y ago

I am doing a fellowship in journalism to raise the voices in #parkinsons #healthcare my first publication on #stigma #neurology #mentalhealth #movement-disorders @parkinsondotorg.bsky.social @parkinsoncanada.bsky.social @shakinginmyboots.bsky.social @alliesiggy.bsky.social @michaelokun.bsky.social

All NIH study sections canceled indefinitely. This will halt science and devastate research budgets in universities.

#yopd folks in america - the shutdown of NIH grant reviewing is going to have a major impact on Parkinson's disease research to mention just one disease among, well, all of them. yikes. #nih #parkinsons

Let me know when Amazon acquires DHHS

If history has taught us anything it is that the sick & disabled will be targeted first

I had my Mom enrolled in a monthly flower subscription service. I cancelled it as she has passed. They sent me a free bouquet and condolences. The Bouqs is my go to flower service. Direct from growers. Highly recommend

When I was diagnosed with Young Onset Parkinson’s I was so confident I was going to try ALL the things. Find some overlooked discovery or shortcut. Now I try & focus on learning about the disease and being grateful for what I have. It’s like a weight has been lifted off my shoulders

Part of my frustration with social media rn is what I call “The Rise of the Device” the constant barage of gizmos and gadgets, jaw dropping videos of fellow Parkies dramatically freed from an array of symptoms. Is this helping? Maybe it’s just me. Good listen: search.app/pCxDK46zfDHG...

The Dramatic Cure

In recent months, many of us have become familiar with the sense of fear expressing itself in our bodies. We may feel restless or physically exhausted. At times, we may even have trouble catching our ...

search.app

Deleted my X account. I actually live on the Southern border. The level of misinformation if crazy

Crexont Day 1 youtube.com/watch?v=-CGu... please subscribe #parkinsons

I have very good news for Parkinson's patients in El Salvador. Talks will soon begin for the creation of a foundation for Parkinson's patients, of which I will be a part. @shakinginmyboots.bsky.social

Pain in Parkinson’s. Get tired of reading studies that’s conclusion is we need more studies or personal care management. There aren’t even enough doctors to do that, especially outside major cities. I appreciate the wirk but I don’t have the luxury of time onlinelibrary.wiley.com/doi/10.1002/...

Happy New year! Took a social media break, turned 50, kids back to school Wednesday. Here’s my big Parkinson’s flex #yopd