Please explore our collection of previous features from Parkinson’s Movement newsletters below.
Your Moment, Your Movement - Spring 2018
Newsletter Gaynor Edwards introduces .
WELCOME to the first newsletter of 2019. If ever there was a year to get involved – this is it, with Kyoto calling and the promise of the 5th World Parkinson Congress. Ever questioned why be involved, why become an advocate? All the answers can be found there – along with knowledge, understanding, hope, fun and friendship. It only happens every three years – so if you can’t make this year, pencil it in for 2022.
Parkinson‘s Movement was created by three people (advocates) who, at the time, had no idea of the impact they were to make or how extraordinary they were. Having all been diagnosed with PD at an age younger than the norm, they had a mutual understanding and a common frustration at the lack of progress towards finding a cure.
For many potentially extraordinary people, the story would stop there… perhaps heading for a downward spiral of denial and despondency. Our three founder advocates happily took another route.
One of the co-founders of PM, still very much a leading light of the Movement – Jon Stamford, adopted Carpe Diem as his personal motto. There are few plus sides to PD save for the perspective that mourning the past or fearing an unknown future is largely detrimental to your wellbeing in the here and now. We should all ‘seize the day’, live life and make it count. In this issue of the newsletter Jon celebrates the congress and the PD community.
The late Tom Isaacs made every day count as an advocate patient and participant in a trial. His belief in one particular trial ultimately led to the formation of The Cure Parkinson’s Trust. In many ways Tom story, the latest results relating to this potential treatment will be out within the next few weeks, along with a documentary to be screened by the BBC featuring both Tom and other PM advocates.
Completing the triumvirate of advocacy that launched the original Parkinson’s Movement, alongside Tom and Jon, was Sara Riggare, the latest recipient of national recognition in the field of medicine in her home country of Sweden. Her impact, reputation and due respect among the PD patient and research community is an example of the dynamic proactive international Parkinson‘s community out there. She is also an ambassador for the WPC.
Fellow PwPs aside, the WPC also offers an unprecedented opportunity to be among and talk directly to some seriously brilliant brains, belonging to some of the leading lights of the neuroscience arena. With Cambridge-based Professor Roger Barker in charge of the program… to provide an indication of the quality of content and a yen to get booking your place.
Both this newsletter and the next (out in May) will focus on this summer’s WPC. Dr Jon Stamford takes the lead – as ever – celebrating the event as it continues to break down barriers and introduce new schools of thought. Don’t miss the video footage in this issue – as Jon asks Roger what’s in store. Meanwhile WPC Ambassadors north and south – our own David Sangster and New Zealand’s Andy McDowell – have a catch up before meeting for a beer in Kyoto.
If ever there was a good time to discover this international community and to be part of it… the time is this June and the place is Kyoto, Japan – the exciting venue for the 5th World Parkinson’s Congress. Discounted admission tickets for early bookings are available now – on the WPC website. Further info can be found there and in this and the next PM newsletter.
A Blooming Good Start to the Holiday - Winter 2018
A blooming good start to the holiday
Having had very mixed experiences at airports since being diagnosed with Young Onset Parkinson’s, this summer I was delighted to try the ‘Sunflower Lanyard’ for hidden disabilities which has now been rolled out across all UK airports.
Over the last 10 years, flying with Parkinson’s Disease has been eventful. On several occasions I have had issues with security (some so distressing that tears have been shed, which ordinarily I avoid in public!) Despite written documentation from medics, I have often felt unwelcome, a time waster and a hinderance. Once I remember the manager being called and my entire medical supplies, needles and syringes and oral medications being examined in public, to the interest of many a inquisitive fellow passenger just because of some liquid laxative!
Two years ago I had Deep Brain Stimulation surgery (which involves having a pacemaker like device implanted with wires passing into my brain. The electrical impulses which pass through the wires help the symptoms of my disease) Since then, Airport Security has become even less appealing. Despite having medical documentation stating manual body search only (because passing through a body scanner arch could adversely re-programme my neuropacemaker) this isn’t often met with a welcoming smile! Depending on the airport, managers have been called and body searches undertaken in ‘little rooms’ away from your friends or family, not always easy if I am at shuffling speed! I know it’s a bad day when I am overtaken by an elderly gentleman with a stick!
So, this summer I was keen to see how much easier my journey through Stansted Airport would be with my Sunflower Lanyard, picked up from the most helpful staff at the Information Desk in Arrivals.
The distinctive lanyard is designed for passengers with hidden disabilities. It enables travellers to discreetly identify themselves to staff to ensure tailored help and support can be offered throughout their journey. Assistance staff at Gatwick are trained to spot any passenger wearing the sunflower lanyard and staff are able to help passengers who may need more time to prepare their belongings ahead of security screening for example, or walk through to the airport gate.
The lanyard was a definite success. Passing through security was a relative breeze in comparison to previous occasions. Obviously I was still expected to comply with airport security regulations, but as soon as my lanyard was spotted at security, I was discreetly redirected to the Fast Track queue along with my family. This was much less stressful than fighting my way through the crowds. Bypassing the body scanner was uneventful and and the manual body check was quick and sensitively done without drama. The highlight has to be that my bag was X-Rayed but not searched! On return into the UK, we could again use the Fast Track lane through passport control. This was really helpful except our hold luggage is not fast tracked. If there was one thing that the system could improve, it would be providing more seating in baggage reclaim or the ideal would be fast tracking our luggage too so that we aren’t waiting in baggage reclaim for almost an hour!
On this occasion, on our arrival home, I should have asked for more assistance. A chair would have been helpful as I find my mobility diminishes after a few hours cooped up in a aircraft. However, I now have the assurance that if I need more assistance at a UK airport, it will be more easily accessed with my lanyard, which I can keep and use at any UK airport in the future. Thank you Stansted Airport for a much improved airport experience.
I really recommend giving it a try. What have you got to lose?