Parkinson's UK

Annie’s dad was diagnosed with Parkinson’s in 2008 and sadly passed away in 2013. Not long after losing her dad she too was diagnosed with Parkinson’s, aged 47. She started playing walking football and became the sole female player of the Parkinson’s England Walking Football Squad. “My dad lived a really full and active life. He was strong, brave, stubborn and smiley, and a sublime footballer nicknamed “Tank”. It was utterly heartbreaking to see the best of him being taken by the worst that this condition has to offer. “I was diagnosed with Parkinson’s on the 1st of April 2015, age 47. In early 2020, I was introduced to 4 people who were unknowingly about to change my life. “I was invited by Northern Lights to play in a Parkinson’s Walking Football game. Up until this point, I had been playing Walking Rugby, a sport I knew well and felt safe with. Walking Football was a new challenge, out of my comfort zone. And yet, I loved it. “2022 was the year that changed my sporting life. One day in June, I received a text: “Save the date, England Trials – you’ve earned the chance.” I hesitated as my feelings of Imposter Syndrome kicked in, until the words of my wise youngest son rang in my ears, “You have nothing to lose and everything to gain – go for it!” “In July, I received the call to say I’d made the Parkinson’s England Walking Football Squad. I was standing with my son and we both grinned, then laughed at the absurdity of a middle-aged-Parkinson’s-Rugby-Mum turned international footballer! “I consider it a true honour to wear my England shirt – it is a moment I savour privately as I slip the jersey over my head. Every time I do so, I catch my breath, say a silent thank-you to my beloved Dad for being my ultimate inspiration. “I was convinced that there were more like-minded women with Parkinson’s out there, who would benefit from being part of something truly special. So I decided it was time to create my own force for good. And in June 2023, the PD Pioneers Women’s Walking Football Community was born. “Walking football has helped improve my stability, balance, and core strength. Learning a new skill has given me a sense of achievement, a feeling of belonging to something, and has brought me friendship and laughter, particularly on days when you feel that Parkinson's can take away so much from you.”

We are PROUD to have walked the Pride in London Parade 2024! 🏳️🌈 LGBTQIA+ members of the Parkinson’s community were loud and proud at the London Pride Parade, celebrating the true diversity of our community. We’re committed to telling stories from different parts of the Parkinson’s community & helping to celebrate important moments like #PrideMonth. Parkinson’s doesn’t discriminate, and we don’t either 💙

Research news 📣 Results are in from a large study looking at over 280 people with Parkinson's who have speech problems. The study showed that a form of speech and language therapy called LSVT LOUD has advantages when compared to others. "Speech and language therapy research is very important to me personally, as I've seen first-hand how the loss or reduction of our main communication tool leads to higher levels of frustration and anxiety not only for those of us with Parkinson's but our partners and friends. So the development of a treatment that works is very important for the Parkinson's community." Read more 👉🏿 https://prksn.uk/4cUMZki

Pedal to the metal, Phin! 🚴♂️ Join us in wishing Phin the best of luck as his journey from Land's End to John O'Groats gets started! 😁 Tackling over 100 miles a day to finish in 9 days is wheelie impressive! 👏🏻 Some of the Pure team will be matching Phins miles collectively, alongside cheering him on every pedal of the way 💫 This incredible ride is in aid of Parkinson's UK, a charity dedicated to supporting those affected by Parkinson's disease. They fund research to find better treatments and a cure, provide essential support and advice to individuals and families, and raise awareness about this challenging condition 🙌🏻 Donate here to support: https://lnkd.in/eXF7qptV 💙 Enjoy the experience and best of luck, Phin! 🚴♀️🌟 #Cycling #Landsendtojohnogroats #Charity #Fundraiser #CycleChallenge #ParkinsonsUK #Challenge #Pure #Physiotherapy #PurePhysiotherapy

Blog articles are not the only way to stay informed with Parkinson’s research. Podcasts offer a way for people to listen to short episodes on a variety of subjects by downloading them or streaming them online. The good news is that multiple podcasts have sprung up focusing on Parkinson’s. Learn more here if you are interested in hearing about research that is happening into a variety of Parkinson’s symptoms, from the researchers themselves 👉 https://prksn.uk/3KHVm6s

We're offering Drug Accelerator grants to develop novel drugs for the treatment of Parkinson’s. Sign up for our virtual workshop on the 12 July at 11am (BST) to hear more about the award scheme 👉🏿 https://prksn.uk/3KU5h9a #drugdevelopment #drugdiscovery #neurodegeneration

A message from our Chief Executive, Caroline Rassell, to the new government 👇 “Unacceptably long waits for care and medication shortages have affected our community leading to avoidable hospital admissions and worsening symptoms. We look forward to seeing the new government address NHS staffing gaps, as they promised in their manifesto. “Our community battles a woeful social security system that fails to recognise the basics of life with Parkinson’s, and so denies many their entitlements. Others are forced out of employment early due to employers’ poor understanding and a lack of truly flexible working. We hope that the new government will make the much-needed improvements that we have long campaigned for. “The promise of Parkinson’s research has yet to be realised, but we believe we are close to major breakthroughs. We’re encouraged by the focus on life sciences and look forward to working together to transform Parkinson’s treatments. Sustained funding and effective partnerships are crucial in making these breakthroughs possible, enabling us to bring new and effective treatments to those living with Parkinson’s. “Our community shared their priorities with candidates and made a compelling case for change. Now we want to see the new government taking the urgent action needed to improve Parkinson’s care, support and treatment.”

“Comedy was something I had always thought about doing. Along with other things, I thought I might get around to it one day. However, when I was diagnosed it gave me more of a sense of urgency.” Monday was International Joke Day and we’re here to share Phil Jerky's story. He was diagnosed in 2017 with young onset Parkinson’s, he was just 36. But it prompted him to start activating a few ambitions. Comedy and Parkinson’s have a curious, coincidental partnership. Billy Connolly, Paul Sinha, Paul Mayhew-Archer are just a few of the famous faces living with the condition. They are comedians first and foremost, who were busy entertaining the masses long before their diagnosis came along. Affecting around 153,000 people in the UK, the impact of Parkinson’s is far reaching. With over 40 symptoms, experiences and severity can vary widely. So it’s an incredible feat for anyone to find the funny side when living with Parkinson’s. Getting up on stage to crack gags about a progressive neurological condition, after a shattering diagnosis, certainly takes some bottle. Learn more about Parkinson’s and comedy here 👉 https://prksn.uk/3La9eH8

We’ve had lots of exciting research announcements over the last few weeks. From a potential blood test which could identify Parkinson’s before symptoms occur, to a trial looking at protecting brain cells in Parkinson's, here is everything you need to know 👇 1. Research co-funded by us shows promise for a blood test that could identify Parkinson’s before movement symptoms occur. Researchers at University College London have developed a test that was 100% accurate in identifying Parkinson’s when comparing blood samples from 99 people with Parkinson’s and 36 people without the condition. The evidence suggests that the test could be used to identify Parkinson’s 7 years before movement symptoms appear and someone receives a diagnosis. Professor David Dexter, our Director of Research, said: “With more work, it may be possible that this blood based test could distinguish between Parkinson’s and other conditions that have some early similarities, such as Multiple Systems Atrophy or Dementia with Lewy Bodies. This is an important next step.” 2. We’re joining forces with The Michael J. Fox Foundation for Parkinson's Research to fund Hernatis on their first trial of an exciting new treatment called HER-096 in people with Parkinson’s. The potential treatment might be able to protect brain cells in Parkinson’s, and has been tested in a study with 60 healthy participants and was shown to be safe with no serious side effects. Arthur Roach, our Virtual Biotech Director, said: “We hope this study will show that HER-096 is safe and that it has the potential to be a life-changing therapy for people with Parkinson’s in the future.” 3. We’re also teaming up with The Michael J. Fox Foundation for Parkinson's Research and Mission Therapeutics to see whether a potential new treatment, MTX325, is safe, gets into the brain and improves energy production in brain cells of people with Parkinson’s. The clinical trial is in the planning stages and we hope there will be an opportunity for a small number of people with Parkinson’s in the UK to take part. If you would like to read more about our latest research updates, please visit 👉 https://prksn.uk/4ck57Ea

‘I Hear You’, a soundscape of the unheard world of young onset Parkinson’s supported by Parkinson’s UK, was premiered at Bloomsbury Studio, London on Tuesday 11 June. We know a large number of people living with Parkinson’s experience mental ill-health. The risk of this can be greater for people living with young onset Parkinson’s, interfering with their relationships and reducing social networks. Social support has been shown to improve both mental and physical health. This project sought to explore what it’s like to live with these symptoms and to provide a supportive community. Click to read the full story 👉🏼 https://prksn.uk/3zgd0vQ