SParky Samba

Into a new year we are launching a new promotional video. Please send it on to anyone who might have an interest, Cardiff based or otherwise. youtube.com/watch?v=4OSmf-…

Well done to the 700 great #Warriors of Adewunmi Desalu Parkinson's Foundation, #Lagos, #Nigeria who walked in the #Move4PD Stride With Strength walk to raise #Parkinsons Awareness 🏟️🚶🏾‍♀️🚶🏾‍♂️👩🏿‍🦽🚶🏿‍♀️👩🏾‍🦯👨🏿‍🦯🤸🏿🏩 Three of your friends and admirers in the UK were honoured to walk at the same time here in England in support of you all 🚶🏻‍♀️🚶🏼‍♂️🚶🏽‍♂️🌍 I'm hoping to visit you again in October 🙏🏼🇳🇬 @adpforg @CureParkinsonsT @AfricaParkinson @omotolathomas8 @TaniaPa08474924 @ParkinsonsUK @thewfauk @TheAfricaReport @annieconmonkey @PDPioneers @BBCAfrica #WeAreAllOnTheSameTeam

Thank you for this. I didn’t know about it.I will check out my GP

Interesting/concerning reading... theguardian.com/education/2025…

@ClareMingins I like that “how and where I use my attention” @purposeful_pd it makes a difference

Astonishing experiences draw attention, magnify effects, perceptions, even magnify physiological processes.
 I wish to learn more and more about the way things change, psychologically and physiologically, with how and where I use my attention.

A new important lens on demoralization in Parkinson’s disease. Do you have a plan if you encounter demoralization? Spoiler alert: Demoralization affects about 1 in 5 folks w/ Parkinson's. This is a must-read new article by Dr. Indu Subramanian and colleagues in Movement Disorders Clinical Practice. The authors pull back the curtain on demoralization. Remember, demoralization is distinct from depression. It is tragically under-recognized. Key findings: - Demoralization is NOT depression. While the two overlap, demoralization stems from a loss of meaning, motivation and purpose. Spoiler alert: demoralization is NOT simply a 'decreased mood.' Antidepressants alone will frequently miss the mark in addressing demoralization. Don't be suckered that a pill will fix everything. - ~20% w/ Parkinson's affected. That is nearly one in five people. It is more common in younger onset and when folks are facing major life transitions. - How do you get to 'hope' from demoralization? Compassionate care, meaning centered psychotherapy, mind–body interventions and early support. - Support is ideally delivered at key life junctures. My take: I really like this article a lot as it not only frames demoralization, but it also offers ways to address it (see figure below). Here are 5 points that resonated w/ me. 1- It’s not just in your head. Demoralization is real. We must be sure it is named, screened for and treated. 2- Words matter. How a diagnosis is delivered and how we support people through the journey can change everything. 3- Hope can be a treatment, however it must be used carefully and in realistic context. Consider meaning, connection, purpose and community when addressing demoralization and offering hope. 4- Don't go it alone. Peer support, therapy and open conversations can and will in many cases "pull people back from the brink." 5- Parkinson’s is more than just a movement disorder and we must stop confusing demoralization with depression. Check out the tools in the figure they offer to help people reclaim their lives. …mentdisorders.onlinelibrary.wiley.com/doi/full/10.10… pdplan.org @ParkinsonDotOrg @FixelInstitute #Parkinsons @DrISubramanian @movedisorder @MDCP_Journal

@purposeful_pd I wholeheartedly agree

Extremely important aspect to Parkinson’s but rarely addressed.

Great paper from this fab team on the impact a Parkinsons diagnosis can have on mood & motivation

@purposeful_pd @masson_graeme Graham can you create. A metronome in your head?

@masson_graeme Great stuff, Graeme! I think Parkinson’s is contributing to overall neuroscience almost as much as they contribute to Parkinson’s. I’ll take all of this you got!

#parkinsons is fucking weird. A couple of vids of me walking in the early hours. 1st one shows the difficulty PwP can have putting one foot in front of each other (“freezing”). Now just add a metronome and change is instant (2nd vid) 1/2

Kudos to Neuralink for adopting the most important principle ensuring the safe future for deep brain stimulation and brain computer interface therapies. The ethical principle of 'we do it to reduce human suffering.' This principle was introduced by us in 2012 in a TedX talk and has been embraced by the DBS Think Tank and the wider neural interfaces community. Remember, 'Your brain controls everything and we can control your brain.' This technology comes w/ great societal responsibility. New X video highlighting the concept and the progress of Neuralink: x.com/neuralink/stat… TedX Video w/ over 500K views introducing the concept in 2012. 'Your brain controls everything and we can control your brain.' youtube.com/watch?v=7udZ5u… @neuralink @DBSThinkTank @elonmusk @ParkinsonDotOrg @FixelInstitute

“. . . the results of the study suggest a beneficial and possibly even therapeutic role for storytelling workshops.” #StoryTellingWorkshops

It’s time to flip the script on Parkinson’s care. Do we need more Parkinson’s Integrated Practice Units (IPUs)? The Parkinson’s Elevated Model suggests we shift from reacting to 'proacting.' Instead of chasing disability, let’s strengthen the potential for a greater 'healthspan.' Healthspan is that sweet spot where people live longer, healthier, and more independently. The Parkinson’s Elevated model by McKee and colleagues is exactly the type of blueprint we need. Key Points: - A new model offers a Parkinson’s Integrated Practice Unit (IPU) that prioritizes proactive, value-based care coordinated across a multidisciplinary team. - The team includes neurologists, primary care practitioners, rehab therapists, and others. - Exercise is medicine. High-intensity aerobic exercise is positioned not just as helpful, but some people think it may be disease-modifying. - The model focused on sustainability by design. A shared-risk financial model was aligned w/ health system incentives. - The model focused on what persons w/ disease need. It asks the question 'how can each person benefit?' Examples include fewer hospitalizations, better quality of life and a dignified end-of-life experience. My take: There were 5 points that resonated w/ me about this article. 1- We don’t just need more care, we need the right care at the right time. Parkinson’s care should be personal, proactive, and patient-centered. 2- Exercise isn’t optional, it’s essential. If it were a pill, we’d be handing it out in every neurology clinic. 3- The fragmented healthcare model is failing people w/ Parkinson’s. It’s time we stop bouncing patients between providers and start building teams. 4- A better journey is possible. Early diagnosis, evidence-based exercise, and coordinated support can potentially preserve function and dignity. 5- We can’t afford to wait. As healthcare costs skyrocket, Parkinson’s Integrated Practice Units aren’t just better, they’re smarter and more sustainable. Take home point: Let’s build a future where Parkinson’s care doesn’t just manage disease, it promotes health. We need a plan for better care. frontiersin.org/journals/sport… parkinsonplan.org #Parkinsons #Healthspan #Neurology @ParkinsonDotOrg @FixelInstitute

When I type on a keyboard it induces #dyskinesia which is most noticeable in my face. I am working out which strength of blue glasses help the most. Two shown here. Just look at the response #Parkinsons

Brilliant work ⁦@BarbaraMolony⁩ thanks so much for supporting SParky Samba

If you are at Endure24 Reading today look out for @BarbaraMolony. She’s doing the circuits and raising money for us. Thankyou, Thankyou. Give her a cheer if you see her she’ll be the only one in a vest like this

Are there possibilities here for encouraging Neuroplasticity? Thoughts anyone? @ScienceofPD @DayneBeccano @PDwarriorBristl @purposeful_pd @HeroesNeuro

Plastamination nation: Are plastics fueling a rise in Parkinson’s? The latest piece in the journal Movement Disorders sounds a possibly urgent alarm: the plastics all around us, from microplastics in our food to nanoplastics in our air, may be doing more than polluting the planet. We need a plan: pdplan.org Plastics may be invading our brains, disrupting dopamine circuits, and possibly triggering or worsening Parkinson’s disease. I will tell you why Erro and colleagues think it is time for neurology to get serious about plastics. Key Points: - Plastics are in our brains. Stop and think about that. - Micro and nanoplastics have been found in human brain tissue at levels higher than in other organs. - Our brains are actually less efficient at clearing plastics. - The plastics can get in via the gut, lungs, and the nose. - Could they alter the microbiome, inflame the gut, cross into the brain, damage mitochondria, and misfolding of alpha-synuclein? We are still uncovering the possible effects. - Dopamine neurons are an especially vulnerable population of brain cells (to plastics). - In mice, the plastics are associated w/ movement, damaging dopamine-producing cells, and interfering w/ energy metabolism. My take: Here are my 5 take home resonant points from this article. 1- Plastics are not only a problem of environmental pollution, these particles may get into your brain. 2- The gut and brain are interconnected and plastics can damage both. Scientists have been interested in changes in the gut lining and gut bacteria, and many smart people think this may influence the brain. There are concerns that it could be important to possibly triggering Parkinson's. 3- Both your mitochondria and the circuits important for movement (basal ganglia) don't like being 'messed with' by microplastics. 4- We don't know if plastics accelerate the pathology in human Parkinson's. We are worried that plastics may stick to the proteins that clump in Parkinson’s. Do they play a role in misfolding and spread? 5- Let's act now and be proactive. The precautionary principle should be applied. Let’s push for cleaner environments and more research to proactively prevent “plastamination” of our brains. …mentdisorders.onlinelibrary.wiley.com/doi/10.1002/md… #PlasticsAndTheBrain #ParkinsonsAwareness #Microplastics #NeurologyMatters #BrainHealth @ParkinsonDotOrg @FixelInstitute @alzassociation

We are looking for your support to sign the petition so that it can be debated in #parliament not just people with Parkinson's, families, friends everyone! petition.parliament.uk/petitions/7137… @CureParkinsonsT @ParkinsonsUK @ParkinsonsEU @ParkinsonsEN #ParkinsonsAwareness

Thank you @ParkinsonCanada for the CARE Fund grant. This made it possible for me to create the Mime Over Mind therapeutic videos for my PD Sisters & Brothers 🌷🙏🌷

@SalsbergMathews @ParkinsonCanada @ParkinsonsEU @ParkinsonDotOrg @ParkinsonsUK @womenspdproject @PdAvengers @RichelleFlan Barbara you have such wonderful ideas!

Loosen Parkinson’s stiffness by walking a Mime dog. Check out our free therapeutic Mime videos at MimeOverMind.com/videos @ParkinsonCanada @ParkinsonsEU @ParkinsonDotOrg @ParkinsonsUK @womenspdproject @PdAvengers @RichelleFlan

News: Canadian artist with Parkinson’s @SalsbergMathews has released an innovative new series of videos about how mime can be used to help manage Parkinson’s symptoms. 👉 Learn more: buff.ly/foxhAcW #Parkinsons #Parkinson