PRIME Parkinson

The UK arm of a Gatsby Foundation programme to innovate Parkinson’s care. Run from @bristoluni by @dremhenderson and team in collaboration with @radboudrmc

[PRIME Parkinson @PdPrime]

Thrilled to see the recent paper on the BONE PARK 2 algorithm highlighted by Dr Michael Okun! Huge credit to Katie Naylor and co-authors for this outstanding work. Check it out here: https://t.co/NU9GCWSWR1
@DrEmHenderson @EmmaTenison @celiagregson

[Michael Okun @MichaelOkun]

A fresh and shocking update on osteoporosis risk in Parkinson’s? Spoiler alert: Osteoporosis is twice as common in folks w/ Parkinson’s including men, and it is completely treatable when we find it early and we act on it. Osteoporosis means that bones lose mineral density and become fragile, increasing the chance of fractures. Naylor and colleagues describe in a new paper in Age and Ageing that osteoporosis in PD is underestimated and undertreated and they provided a new BONE PARK 2 algorithm to close the treatment gap. To pile on, a new JAMA Patient Page by Voelker highlights practical steps for bone screening and treatment across all older adults.
Key Points:
- High fracture risk in Parkinson’s is driven by a mix of falls and higher rates of osteoporosis across all stages of disease.
- DXA scanning is feasible in most folks w/ Parkinson’s and helps refine FRAX risk predictions, however the overall treatment message rarely changes.
- A major treatment gap persists because only a minority of those who qualify for therapy are receiving bone protective medications.
My take: I tell all of the folks in my clinic w/ Parkinson's to get regular bone scans and act early if any signs of bone softening. Parkinson's disease is a condition you definitely don't want to be walking around w/ soft bones. Here are 5 points that resonated w/ me: 1- Recognize fracture risk early since folks w/ Parkinson’s have more than 2X risk of hip and spine fractures and this includes men. 2- Understand that osteoporosis is treatable and therapies are available that safely strengthen bone and lower fracture risk. 3- Request a bone density scan because DXA results can guide decisions and help health care providers to match the right therapy to your situation. 4- Ask about vitamin D and calcium since optimizing these nutrients is central for maintaining healthy bones. 5- Reduce falls whenever possible since balance training resistance work and safe home environments are critical pieces of a prevention plan.
https://t.co/EJnYUD5HVJ
https://t.co/riygigZgGc
#parkinson @ParkinsonDotOrg @FixelInstitute @ACPIMPhysicians @GeriSoc @JAMA_current @RayDorseyMD

[PRIME Parkinson @PdPrime]

@MichaelOkun Thank you for the share! We're so proud of this work to create an updated & evidence based algorithm for assessment and management of Bone Health in Parkinson's Disease using data from our PRIME-UK RCT ! For more info on the PRIME Trial check out our account

[Parkinson's UK @ParkinsonsUK]

Meet Ben. He's 47 and lives with Parkinson's. Small things like moving slower or standing for long periods can be an issue for him when travelling. But he trialled our new badge in collaboration with @thetrainline, and this is his story.

[Ageing and Movement Research Group Bristol @AMRG_Bristol]

Please join us in saying a huge 'good luck' to Dr Katie Lloyd as she enters her PhD Viva this afternoon where she'll be defending her thesis which is based on the @PdPrime trial !

[Katie Lloyd @katieelloyd]

So proud to share the results of the @PdPrime RCT at the #MDSCongress in Honolulu, which represents a huge @AMRG_Bristol team effort in delivering this complex trial. Next stop publication 🔜

[PRIME Parkinson @PdPrime]

Some important reminders and suggestions for caregivers who are supporting people living with dementia in Parkinson’s.

[PRIME Parkinson @PdPrime]

Today marks the International Day for Older Persons, a day of celebrating the contributions of older individuals and honouring their dignity. Today, we emphasise the importance of healthy ageing and the need to strengthen the support systems in place for these individuals.

[PRIME Parkinson @PdPrime]

A patient’s views on their appreciation for regular communication with a Parkinson’s clinician.

[PRIME Parkinson @PdPrime]

As a caregiver, it’s important to prioritise your own health and wellbeing while caring for someone with Parkinson’s. Here are some actionable tips to try and achieve this balance.

[PRIME Parkinson @PdPrime]

Dr Alex Lindsey-Perez speaking today on Advance Care Planning in the PRIME UK trial, and drawing quite the crowd 👏💙💜 so pleased to be getting these incredibly important findings disseminated to improve care for people living with Parkinson’s #EuGMS2025

[PRIME Parkinson @PdPrime]

A positive experience from a participant of our PRIME study!

[PRIME Parkinson @PdPrime]

Consider these tips when supporting someone living with dementia in Parkinson’s.

[PRIME Parkinson @PdPrime]

Another quote from our PRIME study highlighting the positive experience of regular communication between the Parkinson’s professional with a patient and their caregiver.

[PRIME Parkinson @PdPrime]

Here are some tips for dealing with fatigue!

[PRIME Parkinson @PdPrime]

For those not in attendance at the conference, we'll make sure to share this poster and others from the upcoming conferences in due course! 3/3

[PRIME Parkinson @PdPrime]

September 10th is World Suicide Prevention Day.
We know that having Parkinson's can impact mental health, and you can visit https://t.co/laGOWtgSQZ to find out more about this as well as how to access support. As a team we're committed to researching this...🧵1/3

[PRIME Parkinson @PdPrime]

Which is why @Dr_S_Haworth from @AMRG_Bristol is presenting findings from the PRIME Cross-Sectional Study on suicidal thoughts in Parkinsonism at the upcoming @movedisorder congress on 07/10/2025 at 12:30- so mark your diary if you're attending! 2/3

[PRIME Parkinson @PdPrime]

Parkinson’s Disease is a lot more individualised than one might think. No two people will have the exact same type of symptoms, severity of symptoms and disease progression!

[PRIME Parkinson @PdPrime]

Regular exercise is crucial for managing symptoms and improving quality of life for people living with Parkinson’s Disease. Try some of these tips to help incorporate exercise into your day-to-day life!

[PRIME Parkinson @PdPrime]

Regular exercise is such a vital tool for managing the disease, supporting mobility, and improving quality of life for people with Parkinson’s.