Newsletter features

WITH hardly time to recover from the jet-lag following WPC Kyoto, the call to board the plane to Grand Rapids can be heard.

This year’s Grand Challenges in Parkinson’s disease (21-22 Aug) – hosted by Patrik Brundin at his Michigan-based Van Andel Research Institute, along with co-sponsors and organisers The Cure Parkinson’s Trust – looks at the fascinating subject of Genetics.

Rallying to the Challenge, a meeting designed for and by people with Parkinson’s, advocates and care partners examines how the Parkinson’s community can impact and accelerate research. Titled Understanding Genetic Risk, this is a hugely exciting area for Parkinson’s research and perhaps – in many ways is the missing link towards the cure, or should that be cures?

For a long while there has been speculation that Parkinson’s is a syndrome – made up of many variants  under the PD umbrella. Ultimately organising trial advocates according to their genetic type gives us a far more advanced way of testing potential cures for specific types of Parkinson’s.

There are many theories concerning the onset of Parkinson’s… speculation of environmental factors and a ‘trigger’ factor that provokes initial onset. Alongside this there has often been the belief that those diagnosed are genetically predisposed to the condition.

Some people have a clear and obvious genetic link; others are classed as ‘idiopathic’ with no know genetic links. Others are more complicated still where the mother and father’s genetic code has not blended well and has resulted in a particularly rare strain of PD, even though both parents show no symptoms.

In a Parkinson’s world of some knowns and many more unknowns, the genome offers a definitive starting point.

In a bid to cure the many different versions of this chronic condition, it may be useful to divide and conquer. We need to drill down and identify the different types of genetic mutations that may have been a contributory factor.

This proper look under the bonnet of Parkinson’s genetics requires a new way of thinking – to be discussed extensively at these two meetings in Grand Rapids.

If we keep working in the same way, repeating the same old patterns of behaviour; we’ll keep  making the same mistakes and getting the same results. Any new approach should be embraced and welcomed with open arms and more importantly an open mind – by clinicians, researchers and patients alike.

Rallying to the Challenge  is an inclusive, patient-led meeting. The researchers stand to gain as much knowledge and insight from the patients as vice versa.

There’s no such thing as an easy win when it comes to PD but progress will be made through compassion, collaboration and courtesy. For the PwP genetics is a contentious area and for the sake of everyone it should be handled with care. Patient involvement is, of course, essential, and the rewards for all are potentially huge.

Even if short of a cure for this generation, genetics is certainly the key to PD prevention for the next.

Like the WPC, these meetings in Grand Rapids are as much about connections made and conversations had as the convention programme itself. Often one can lead on to the other, as illustrated by the photograph accompanying this story.

Leading geneticist Matt Farrer is pictured with the editor of this newsletter, PM advocate and founder of Spotlight YOPD Gaynor Edwards.

The photo was taken on the final afternoon of the WPC in Kyoto. Fellow PM advocate Vicki Dillon introduced patient and scientist. They are now joining forces to work on some exciting genetic research, specific to YOPD – and, of course, looking at routes to funding. A full presentation at Rallying will reveal all.

In the meantime, anyone interested in taking part in this test requiring saliva samples from the YOPDer (and ideally both natural parents) can indicate their interest by emailing advocacy@cureparkinsons.org.uk.

WELCOME to PM’s summer newsletter – or part two of the trailer for this year’s WPC – the World Parkinson’s Congress. Three years on from Portland, the 2019 event finds the pop-up Parkinson’s principality in Kyoto, Japan.

On so many occasions Parkinson’s has been the poor, angst-ridden, tricky, problem cousin of the neurological family… Even with a pandemic mooted, the Parkinson’s silent majority of older patients can seem quietly accepting of their lot.

The WPC is mould-breaking, inspiring and, for once, has PD leading by example. It is positive, hopeful and revolutionary as one of very few conferences where patients, clinicians and researchers are on an equal footing; encouraged to learn from the presenters and each other. It delivers an epiphany for both patient and researcher and a shining example of advocacy done well.

Being in Japan, even though the conference will be conducted largely in the English language, the native tongue and local customs may be virtual trip hazards for the PwP. As ever, knowledge is key and attempts to speak the language and adhere to the etiquette are always appreciated and generally pay back ten-fold. See our Essential Guide To The WPC 2019.

Effective communication, leading to better understanding, at WPC Kyoto stretches beyond the many nationalities, languages and cultures present. It’s not unusual for there to be a disconnect between patients and researchers – as well as occasionally a preconceived idea of each other. PM’s advice is: be clear, say what you mean and, if not understood, say it differently – but get your point across. The WPC presents a rare opportunity to meet with some of the world’s leading ‘neuro brains’ – beyond that it’s a hugely valuable opportunity to teach them the patient’s perspective. Our Glossary found here is a useful resource for neuro translation.

If you want to know more about how advocates can influence research visit The Clinical Research Village in the exhibition hall – which has a programme of sessions about patient involvement. You can meet some of the PM team and find out how to get more involved. Eros and Gaynor will be there, looking for advocates – both patients and researchers – to talk on camera. If you have a point to make to the wider community – seek them out. The WPC app enables you to send messages to anyone at the conference – which means making and finding friends and contacts should be much easier.

See you there!

If you’ve not been to Japan before it can be overwhelming. If you’ve never been to a WPC 2019 similarly be prepared to be overawed. If you’re fortunate enough to have your place for WPC Kyoto 2019 prepare to be truly blown away. For many, WPC at Kyoto will will be an otherworldly experience.

Be prepared – and we don’t just mean mindset. We would strongly advise anyone attending to do the research and plan ahead.

Technical tactics

Japan is one of the most technologically-advanced countries on the planet. If your phone is an old Nokia circa 1996 chances are you’re not going to get a signal over there.

Smart phone users will generally be okay with G4. Check with your service provider at home and/or online but do it in advance of arriving in Japan.If your phone is locked and locked into a domestic contract, check the phone and data rates accordingly via your provider and their Japanese partner.

If your phone is unlocked you are likely to get a much  better deal by purchasing a Japanese Sim card in advance – to be collected at the airport on arrival.

This can be very cost-effective especially if you plan to use online maps, guidebooks or translation apps or anything data-hungry when you’re out and about.

There is a third option of hiring a tablet for the duration of your stay. The downside of this is that it won’t have your contacts stored and will have to be deleted of all data before being returned on the way home.

The WPC conference venue will have free Wi-Fi and it makes sense to make full use of the very well-developed free WPC app. This allows you to message fellow attendees and manage your own schedule. The app pretty much tells you everything you need to know. Again familiarise yourself with it and have a play in advance of arrival. Don’t forget your leads, chargers, conversion plugs, battery packs and anything else needed.

The compact case for comfort

For PwPs with dystonic feet, the process of putting on and taking off your shoes and socks is often hugely time-consuming. In the conference venue you can keep shoes on but pretty much everywhere else in Japan manners dictate that shoes are removed.

Forget laces, zips, and buckles you will have grown tired of these by the first afternoon – pump it up. Slip-ons are the best choice from a pure comfort perspective and make sense for PWPs getting through airport security.

The Japanese tend to be a small and organised; they don’t tend to do baggage and clutter. Kyoto doesn’t have an airport so you’ll either be coming in from Osaka or possibly on the bullet from Tokyo. Neither the trains nor the hotels are made to store huge suitcases. Better to go small hold case with a carry-on bag and track down a laundry service during your stay.

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 

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?

– Rachel Gibson