What does a positive αSyn-SAA mean?
✅It supports a Parkinson's diagnosis.
✅It does not indicate disease mechanisms, severity, progression rate, biological subtypes, or treatment response.
Important article: www.sciencedirect.com/science/arti...
@albertoespay.bsky.social @ajlees.bsky.social
There is so much more to unpack in this, truly something for any researcher who studies this disease, health care provider who treats it or individual with PD to learn from within. Once again, from the bottom of my heart, thank you Laurie Mischley for all the effort put into this invaluable report.
Loneliness: "As you can see, lonely people reported greater symptom severity for all 33 symptoms. The greatest discrepancies in symptom severity scores between lonely and not lonely people were in social withdrawal/loss of interest, motivation/ initiative, depression, and anxiety."
Longitudinal Data: Firmly believe that every center in the world should have a database as rich as the one you have created. Not only would it allow us to better manage each individual, but it also reveals new insights into this complicated mess of diseases we call PD.
Change in Individual Symptoms Over Time: Really interesting to see how individual symptoms fluctuate over not only each day but each year. I've long thought that this disease varies too much from person to person and is too complicated for any one score to accurately measure.
Fascinating work from Laurie Mischley, ND PhD MPH. Thank you for all that you continue to do for the #parkinsons community. I was particularly drawn to the following sections:
mvp-study.com/10-year-summ...
What a huge contrast between their bravery & the lack of courage in the field to admit that the reason there are no therapies might be that our favorite theories are not good enough. Many would rather peddle false hope than confront the possibility of being wrong.
www.nytimes.com/2024/12/22/h...
Walking backwards and going through narrow spaces or doorways tend to be more problematic for people with movement disorders. A big thank you to @alfonsofasano.bsky.social & Gianluca Sorrento and the entire staff at Toronto Western Hospital's movement disorder clinic for all that you do.
2. Go backwards. The advantage of a treadmill is the forced repetitive movements, make sure we take advantage of them by also forcing people to walk backwards on them in a safe and controlled environment.
That said, I think there might be a better way, here are my recommendations:
1. Use the newest MR headsets. The new @MetaQuestVR 3s is awesome and very affordable. It enables freedom of movement that can allow subjects to walk around tight spaces and go through virtual and real doorways.
Below is a video of me doing some split belt training in front of a screen this past Tuesday. I found it to be a novel and fun environment to do some dual task exercises. There is definitely something to having to think about each step while doing some basic skills that helps...
My Final Visit With A Wizard + The Adventures of Tokkiri
Dedicated to Dr. Alexandra Boogers
tmrwedition.com/2024/12/18/m...
I encourage all to check out her site and give what you can cuz "Parkinson’s doesn’t discriminate — it looks like us, our families, and our communities. Let’s break the stigma, raise awareness, and create a world where everyone impacted by Parkinson’s receives the care and support they deserve."
Tyaisha is an outspoken advocate for those living with Parkinson's disease and the aptly named TBD is her new initiative that strives to "inspire through wellness, conservation education, and access to genetic testing with the intent to guide communities towards sustainable futures."
Excited to introduce to everyone the Thriving Brain & Development Project (TBD)!!!
The brainchild of the wonderful Tyaisha Dillon who I got to know through Brian Pepin (you were right we definitely click).
www.thetbdprojectinc.org
The 2025 enrollment period for the Silverstein Foundation for Parkinson's with GBA's fellowship program has begun! Super excited to start getting applications, click below for more details.
tmrwedition.com/2024/12/16/t...
A beautiful arrangement of a classical Egyptian song
youtube.com/watch?v=CzrX...
A few details on joining the Silverstein Foundation for Parkinson's with GBA and some info on what my role will be...
tmrwedition.com/2024/12/04/a...
This looks awesome, exactly what the Parkinson's community needs, thank you Detroit Tigers's legend kirk gibson for spearheading the development of this wellness center. Next time I'm in the Detroit area definitely will come take a look.
www.detroitnews.com/story/sports...
Mandatory listening: A fascinating & wonderful 'Stimulating Brains' podcast episode from @andreashorn.org interviewing Mark McAuley & Susan Boehnke on patient-led #Parkinsons research, patient-centered care & neuroscience education
stimulatingbrains.org/63-mark-mcau...
I asked meta.ai to Draw a funny greeting card that depicts a snowman with Parkinson's disease that says: "Hope this wintery weather isn't wreaking too much havoc on your symptoms."
This was the best I got, oh well. Season's greetings y'all ;)
☃️❄️
Not yet...
...the ethical challenges he still faces as he continually tries to figure out what DBS settings work best for him to Susan's quest building the Queen's University's Neurotech Micro-credentials Program to Mark's project in that course and so so much more.
What an incredible episode of Stimulating Brains from Prof. @andreashorn.org with guests Prof. Susan Boehnke and astronomy CEO Mark McAuley. They covered a lot of important ground from Mark's Parkinson's diagnosis to the challenges he faced getting DBS to..
stimulatingbrains.org/63-mark-mcau...
Did you know that Intro to BN has 13 method videos? Let's start with the deep brain stimulation video by @benjaminstecher.bsky.social and Gina Lupino. This may be one of the most surprising parts of this resource. Watch to find out why: www.youtube.com/watch?v=Yu2k... #neuroscience #openneuroscience
First post on BlueSky seems apropos for a big announcement. I have joined the Silverstein Foundation for Parkinson's with GBA as their new Associate Director! One of my roles will be helping identify the next round of fellows to join the program. Details to come, follow me for more info...
