@EirwenLM Profile picture

Eirwen Malin

@EirwenLM

Using story for change. Not for me the "do nothing" option, making my difference through local action and worldwide, making use of Parkinson's diagnosis 2014

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Have you tried sidestepping. I only experience something which I feel is likely to become FoG but going crabwise seems to help and you can see where you are going.

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Eirwen Malin Reposted

On #WorldKindnessDay2024 please be Kind to People With Parkinson’s in Hospital by making sure they get their #medsontime


They’ve arrived! And come with Audrey’s touching comments about her links to the landscape around her. Fab! Buy one for everyone you know!

Dawn Diaries calendar out now in aid of ⁦@CureParkinsonsT⁩ ! DM to order your copy

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Eirwen Malin Reposted

Spoken Word Saturday 📆Next date: Dec 14th – 2pm-5pm 📍People Speak Up, Park Street, Llanelli 14+ Free Join hosts @CeriJPhillips1 & David Pitt for an afternoon of sharing stories, poetry, creative writing – all through the Spoken Word! @ymlaenllanelli @llanellistar

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An excellent and hugely informative episode. Thank you @RichelleFlan @Dr_SF_Hussain and a whole crew of women with #Parkinsons who have done so much to raise this issue over the past 5 years or so. And @moversand6 keep up the good work of exposing more of PD's complexities.

Thank you to the Movers & Shakers podcast @moversand6 for helping highlight the different challenges for women living with #Parkinsons @Dr_SF_Hussain shares her story of early #menopause & PD. @LaceySolymar @ruskin147 @MarkIMardell Listen here: open.spotify.com/episode/7J42Vq…



Eirwen Malin Reposted

What an absolutely brilliant idea and such a lovely group-it was an honor to speak to you all! #supportgroup #stigma #parkinsons @movedisorder @AANmember @ParkinsonsUK @KRayChaudhuri1 @kailashbhatia @ajlees @MichaelOkun @basbloem @SoaniaMathur @RichelleFlan

In 2020 we set up a support group for people working or who have worked in the #NHS while living with #Parkinsons This week we welcomed our 53rd member from around the UK 🇬🇧 Retweet to help us find more 🙏🏼

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Eirwen Malin Reposted

Together with 63 other organisations, led by @NVTweeting, we have written to @RachelReevesMP Our letter highlights the importance of working with people and communities, and the VCSE, to democratise decision making in health and care. To read in full 👉nationalvoices.org.uk/publication/jo…

🧵 Today, ahead of the #AutumnBudget we have published a joint letter to the Chancellor, @RachelReevesMP Our letter, signed by 64 health and care organisations, highlights the importance of working with people, communities and the VCSE to democratise decision making in health…

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Does anyone else feel a personal slight when their appointment is postponed, again. I can’t help it but it feels like the clinical team just don’t care.


Eirwen Malin Reposted

At Par-Con I will also be speaking about how technology is accelerating research, improving diagnosis and helping people with #Parkinson’s manage their symptoms better. This is a free online event, see this shared post for the program and to register

COMING SOON: the largest Parkinson’s research trial yet 📣 Join us in October for our event Par-Con to find out more and hear from @CamilleBCarroll , one of the lead researchers of this study. Register here 👉🏽 prksn.uk/3Y5VgwZ

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Eirwen Malin Reposted

#MDSCongress Critical terms barely heard at an MDS science-type Congress: fear, love, comfort, nervous system, hug, feeling, meaning, belief, self-empowerment, consciousness, rhythm, detachment, unlimited, listening, calm, inclusion, and it’s possible!


Eirwen Malin Reposted

Research Opportunity 📣 Researcher’s need carers of people with Parkinson’s who experience thinking and memory problems to test a new support website. The website aims to support carers to take care of themselves as well as providing care. Take part 👉 prksn.uk/3XLwGkZ

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Eirwen Malin Reposted

… and they are off and running. A message from the new member of the SParky Samba family in Llandudno. Tutored by @ColinDaimond, Supported by funding from @ArtsWales and with help of @parkinsonsuk Cymru, they are clearly getting the hang of it!


Eirwen Malin Reposted

Are you an active person with Parkinson's, or do you support someone with the condition? 📢 We want to hear your thoughts on our Physical Activity resources and how we can deliver more information about the benefits of being active. Take part 👉 prksn.uk/3MtlnYi

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Such a lovely group to work with so ably facilitated by @pclaySLT An excellent example of public, patient involvement in research @BarbaraMolony @NIHRinvolvement

Such a joy to meet with our amazing co-production group this week to celebrate all their hard work. Thank you so much to you all (including those unable to join @nameeka_shahid @CoastalSLT ) for dedicating time in amongst your other exciting commitments @SParkySamba @SLT_HMC

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Its good to see this beginning to grow.😁😊😆

We welcome SParky Samba Llandudno, meeting for the first time today with @ColinDaimond as their tutor. Have fun "Guys". supported by @ArtsWales youtube.com/watch?v=jTy7nW…



Eirwen Malin Reposted

❤️👍


A lovely thought Claire. Profoundly true and highly quotable.

We welcome SParky Samba Llandudno, meeting for the first time today with @ColinDaimond as their tutor. Have fun "Guys". supported by @ArtsWales youtube.com/watch?v=jTy7nW…



Eirwen Malin Reposted

Ydych chi'n ofalwr? Ydych chi'n adnabod rhywun sy'n gofalu am berthynas neu ffrind, a hoffai ychydig o amser i ffwrdd, er mwyn gofalu amdanyn nhw eu hunain? Ar ddydd Gwener olaf pob mis rydym yn cynnal sesiwn Dadlwytho Gofalwyr sy'n rhad. 28 Meh, 12.30pm-2pm Ffwrnes Fac Llanelli

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There’s me on the left.😬


Eirwen Malin Reposted

We had a fab afternoon yesterday with the residents and families of Ty Enfys, a care home in Cardiff. We played, they joined in, and they raided ?£300 to help keep us going!! Thank you so much Ty Enfys


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