Benjamin Stecher
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benjaminstecher.bsky.social
Benjamin Stecher
@benjaminstecher.bsky.social
Associate Director of the Silverstein Foundation for Parkinson's with GBA as well as Chair of the Patient Advisory Board to Rune Labs.
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.
December 26, 2024 at 4:12 PM
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."
December 26, 2024 at 4:12 PM
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.
December 26, 2024 at 4:12 PM
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.
December 26, 2024 at 4:12 PM
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.
December 20, 2024 at 3:05 PM
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.
December 20, 2024 at 3:05 PM
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.
December 20, 2024 at 3:05 PM

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."
December 18, 2024 at 1:37 PM
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."
December 18, 2024 at 1:37 PM
Not yet...
November 20, 2024 at 1:44 PM
...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.
November 20, 2024 at 1:35 PM