Dr Jon Stamford often tells the story of when he was studying the dopamine systems in Parkinson’s; the first patient he met was himself in the mirror. As former researcher now PwP he has a unique perspective on PD.
Never forget the elephant men - Winter 2019
A group of blind men were told that a strange animal (actually an elephant) had appeared in the village. Being respected for their opinions, people in the village approached them for their thoughts on this animal. So they went to examine it by touch (they are blind remember). The first put his hand on the trunk and announced that an elephant was rather like a thick snake.
A second man felt the animal’s ear and concluded that an elephant was like a fan. The third man to approach placed his hands on the leg and said that an elephant was basically like a tree trunk. A fourth man, running his hands along the side of the elephant said an elephant was like a wall. And so on.
It doesn’t matter how many blind men assessed the elephant. The point was that they each came up with a different interpretation of the elephant to put before their peers. In some variants of the story, the men chose to talk about and reconcile their differences. And everything turned out fine.
In other versions, the men became entrenched in the certainty of their own opinion. Things escalate and it all turns into a bloodbath. Either way, it really doesn’t matter. The key point of all of this (and you will be reassured to hear that there is one) is that there is truth and absolute truth. And they are not – necessarily – the same thing.
The same applies to patient advocacy. Many of us, and especially those who consider themselves to be patient advocates, feel secure in our own understanding of the word. But when I tried to pin down a definition, the answers were surprising. I asked several of the world’s top advocates in Parkinson’s the single question“what is advocacy in the context of Parkinson’s?”
Oh and don’t bother to guess the identity of the advocates from their initials – you will be wrong. ET defined advocacy as “actions that are intended to facilitate a desired reaction”. Yes, broadly speaking Newton’s third law, so certainly a good historical precedent!
JF fleshed out the definition of advocacy a little more as “…an activity by an individual or group that aims to influence decisions within political, economic, and social systems and institutions”. A globalist perspective emphasising the ambitious.
You could, of course, ask how helpful any definition of advocacy is. Do we hold JF’s definition in mind when engaged in our own advocacy? TC felt that “it cannot and should not be rigidly defined” and that, in practical terms, it is “doing the most good with the resources and skills that each advocate has”. This touches on the role of the condition itself. Do you have to have Parkinson’s to be an advocate for instance?
ST took this as read. “… advocacy in Parkinson’s is about the individuals impacted by the condition taking ownership and action in issues important to them personally”. In other words, advocacy was inwardly directed, a journey of self-realisation.
For DK, nothing was off-limits. Advocacy was “action by people living with PD which will influence decisions made by all the stakeholders involved in all our care and cure”.
FH echoed TC’s unease about definition, but lent towards the pragmatic, feeling that it was essentially two-fold – “peer support and public awareness”.
Six advocates, six rather different takes on what advocacy is. And each in turn leads the advocates concerned down a particular pathway. We’ve talked in generalities about what constitutes advocacy. These are essentially roundtable points, academic issues over a coffee.
But what does advocacy mean in the trenches? In many instances it is a case of raising awareness among the general public of Parkinson’s and its needs. Standing on the streets rattling tins. Handing out leaflets. Inviting questions from passers-by. Practical issues, a long way removed from more philosophical considerations.
And for many, this is as far as advocacy goes. A practical need, served by practical response. The low hanging fruit. To my mind, this is only one component of advocacy. I’m more interested in how we influence the decision-makers. How do we reach those people who have power over our lives and change their attitudes? How do we reach governmental policymakers? How do we reach pharmaceutical executive management?
If we think of advocacy as advancing the best interests of people with Parkinson’s, these are the places to exert pressure. I often think of advocacy in military terms. We have our soldiers and we have a battle on our hands. How do we best use our forces to exert maximum effect?
I don’t have all the answers but I do think they will come from targeted advocacy. I believe that we achieve more by focused pressure at high level than by simply raising awareness. We have to aim higher. But we also have to link together everything we know. The learnings from the man in the street through to the metaphysical conceptualisations of advocacy all have something to say about advocacy as a process.
Advocacy is, after all, just an elephant and we are the blind men.
Genetics - not just for geniuses - Autumn 2019
Having insight as both patient and scientist in Britain, Parkinson’s Movement’s own Dr Jon Stamford discusses the importance of genetic testing.
Opportunities for patients to mix with PD researchers are few and far between – usually. But this summer our cup runs over – and there’s no tremor to blame… Wednesday 21and Thursday 22 August, PM is off to Grand Rapids in Michigan for Grand Challenges in Parkinson’s Disease. Bringing together scientists, clinicians and people with Parkinson’s, there are two main meetings – one addressed mainly to scientists and another principally a patients meeting but with plenty of input from scientists.
Comparing with WPC, WPC is huge, some 3000 participants addressing everything from the latest drugs in development down to cranial massage or aromatherapy. A circus in essence (and I mean that in the most positive way). Grand Challenges and Rallying are more narrowly focused. Each year a different subject is chosen for more detailed assessment.
This year’s overarching theme is the assessment of the role genes play in Parkinson’s, both from its onset and its relative progression. And it couldn’t come at a better time as the genetics of Parkinson’s begins to be explored in depth.
As the exploration of the human genome takes higher priority, there is maybe a growing disconnect between scientific aspirations and patient understanding – something peculiar to genetics. For instance, pretty much everybody – scientists or patient – knows that dopamine deficiency is something to do with Parkinson’s. Many go further. But when it comes to genetics, we are barely out of the changing room, so to speak…
We know that the structure of DNA was discovered in 1953 by Rosalind Franklin at Kings College London along with Francis Crick, James Watson and Maurice Wilkins. We probably also know that genes are made of DNA and chromosomes are made of genes. If we look back to our school days, we can probably remember something about Mendel and the colour of peas and how this explained how characteristics could be inherited. Most of us would probably not be surprised to learn that we share 98 percent of our genetic information with chimpanzees. That’s hardly surprising since we are both highly evolved primates. But it will probably surprise you to learn that you share two thirds of your genetic information with watercress!
The link between these scraps and the field of medical genetics is probably less well-known. Yet certain genes influence our ability to function, to thrive and to age. It is widely held, for instance, that we are genetically programmed to live no longer than 120 years. Of course hardly any of us will actually approach that figure. But it remains the case that the quest to understand the human genome and to manipulate it to our benefit is a cornerstone of medical science.
Two decades ago, less than 500 existing genetic/molecular targets accounted for the action of all pharmaceutical agents on the market. As we learn more about our genetic complexity, this figure has risen. We now know that some 15 or so genes can predispose people to Parkinson’s. These genes are of course themselves targets and the more targets we find the more avenues there are for tailored treatments.
This year’s meetings in Michigan will dig deep into the roles of different genes in Parkinson’s. The patients’ meeting (Rallying To The Challenge) will explore these issues not in the dry language of science but in the context of real people with real issues. Genetics applies to all. This meeting will cover the ethics of genetic testing, what the knowledge means and how we treat that information.
Register to Grand Challenges here: https://grandchallengesinpd.org/
Celebrating a community that cares - Summer 2019
Having insight as both patient and scientist in the UK, Parkinson’s Movement’s own Dr Jon Stamford, very much in favour of building bridges and knocking down walls, believes in vive la difference and suggests we watch, listen and learn from fellow patients across the globe.
ONE OF the great pleasures of attending international conferences in general, and the World Parkinson Congress in particular, lies in the opportunity to meet people from other countries and cultures. For the scientists and many of the clinicians this is perhaps less of a thrill. Science is, by its very nature, international. Many of the scientists and clinicians at next month’s conference in Japan will have met at other meetings elsewhere already this year.
Travel to exotic locations is part and parcel of the research scientist’s life; that’s not, however, the case for patients and patient advocates. We do not have huge personal travel budgets. Most of the meetings we attend are within our own countries. Mostly they discuss aspects of local practice and procedure. Some may talk about newsworthy science; others may be there for the companionship. Either way, it tends to be the same faces. That is the reality of many patient support/advocacy environments. International speakers are a rarity and attendance at an international conference is almost like Xanadu.
If we are very lucky, we might be supported by one or other of the research charities. But for the most part, we fund ourselves. A conference such as WPC 2019, taking place in Kyoto from 4 – 7 June amounts to significant personal expenditure. It’s the difference between a family holiday in the south of France and a fortnight in Blackpool. Explaining to the kids that they are going to Skegness so that daddy can go to Kyoto in Japan is, by any standards, an unenviable task. They may have tolerated your enthusiasm to make the world a better place for people with Parkinson’s. But when it impinges upon their own summer holiday… Well, you figure it out. And, let’s face it, you’re going to have to come back with more than a stick of rock and a souvenir T-shirt. You’re going to pay for this big time. And for a long time. So it had better be good. In fact it had better be better than good.
The good news is that it is exactly that. It’s very easy, from the safety of our own countries with their practices and procedures, to believe that these are the only ways of doing things. We have no benchmark against which to judge our approaches. Because something has worked reasonably in the past, there is inertia. There is no stimulus to look at other ways of doing things.
Patient advocacy is something that we take perhaps for granted in the UK. We assume that it is the norm elsewhere. We are mistaken.
One of the most valuable aspects of the WPC conferences in general, and Kyoto in particular, resides in the close proximity of advocates from different countries rubbing shoulders and discussing their own experiences as advocates. But what do we mean by ‘advocate’? Is a patient advocate in the UK the same as one in another country? Well, obviously not.
In fact, in some countries, such as Sweden, the words ‘advocacy’ and ‘advocate’ have no direct translation. And if the word does not match up, it’s unlikely that the role will be similar. Indeed, in Sweden, the exploration of patient opinion and related policy work has often been led by people who are not patients themselves but who act, in a rather patrician way, on behalf of patients. This is a step removed from what we would consider patient advocacy in the UK and is a fertile breeding ground for more active patient movements, influenced by US and UK practice.
New Zealand, interestingly, has similarities with Sweden and the UK. “Although the health service model in New Zealand is based on the UK version, patient advocacy is much less developed,” says Dilys Parker (pictured). There are individual patient advocates like Dilys, advocacy as a whole is largely controlled by the national organisation and individuals are encouraged to conduct their advocacy through this more central organisation. In consequence it is more difficult for individuals perhaps to make their voices heard.
In Malaysia, advocacy is well developed, stemming from the foundation of the Malaysians Parkinson’s Disease Association (MPDA), founded in 1994. There, advocacy has two pillars – creating visibility for Parkinson’s and campaigning for greater access to treatments and medication. MPDA has increased public awareness of Parkinson’s, which in turn has helped to attract a wider membership and louder voice. “That voice has been particularly heard at governmental level, where,” says Sara Lew, “the organisation has helped bridge the gap between local authorities, policymakers, healthcare providers and the wider community in general.
Until 2012 Parkinson’s was not recognised as a disability in Malaysia. Now, as a result of direct advocacy, it is. Other countries have other barriers to overcome.
In Nigeria for instance, Parkinson’s is highly stigmatised and it is difficult to find patients willing to acknowledge their Parkinson’s publicly and to discuss the diagnosis openly. “Overcoming these barriers and encouraging wider advocacy,” says Omotola Thomas, “is being actively addressed in order to encourage patients collectively to use their own voices to champion the rights to better care and treatment.”
There is a popular adage with Parkinson’s that ‘if you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s’. And in many respects, it’s the same with Parkinson’s advocacy. Everybody does it differently and it is a brave man who would say that their own version of advocacy is the best.
Kyoto next month is the place to answer those questions, to discover different ways of doing things, different ways of thinking, different challenges and, above all, different successes. We have so much to learn from each other as advocates, however we define that term. If you have never been to the WPC, you owe it to yourself and to those for whom you advocate to attend. It will genuinely change your life and the way you think about Parkinson’s. It did for me in Glasgow in 2010, in Montréal in 2013 and in Portland in 2016. It will again in Kyoto in 2019. So although it may not have much sway in persuading the kids of the merits of Bridlington for the summer holiday, you can always promise to take them to the next WPC or buy them a karaoke machine on your return.
With thanks to international advocates for their valuable input, including Omotola Thomas (Nigeria), Sara Riggare (Sweden), Sara Lew (Malaysia) and Dilys Parker (New Zealand).
Full of far eastern promise - Spring 2019
Patient and scientist, Parkinson’s Movement’s Dr Jon Stamford packs his phrase book for Kyoto and celebrates community and this year’s Congress.
I talk to a lot of people about Parkinson’s. Sometimes it’s about symptoms and how to manage them, other times it’s about the science of Parkinson’s. But whatever the subject, it’s not long before I find myself discussing perhaps the most important aspect of Parkinson’s. Community.
Why do I say it’s important? Because community, as a concept, illuminates every part of our lives as people with Parkinson’s. From the moment we wake, slow and stiff, through our daily trials and tribulations, to the point where we climb back into bed and switch off the light, the Parkinson’s community is paramount. It might be something from a Facebook support group telling you how best to get out of bed and put your socks on. Or maybe something you remembered from a local group meeting about diet affecting your medication. Maybe a patient advocate texted you something about sleep hygiene that helps you get a night’s sleep. These are all examples of community in action, sharing information.
Parkinson’s is a problem illness. The variety and individuality of symptoms makes our own flavour of Parkinson’s specific and personal. It is rare to find another individual with the same symptom cluster. That fact alone contributes to the sense of isolation experienced by people with Parkinson’s shortly after diagnosis. But that same individuality of experience, in turn, provides the roadmap to engagement. As anyone who has ever typed Parkinson’s into search engine will tell you, the Internet is full of Parkinson’s forums, places where every aspect of Parkinson’s is discussed.
Part of the journey as a person with Parkinson’s maps that engagement with the wider community. From that first tentative post asking a difficult question, you are part of that virtual community. And before long, you are giving advice as much as you are receiving. There are, broadly speaking, two types of Parkinson’s community – the small local community of individuals and the international virtual community. Each has its merits.
Local communities tend to be practical; international communities more philosophical. Both have their place and both dovetail nicely with each other. But imagine if there was a third type of community – international and made of flesh and blood. Well, there is. Every three years just such a community takes centre stage when the World Parkinson Congress assembles to discuss the latest in the field of Parkinson’s.
People with Parkinson’s from around the world gather once again – as they did in Washington (2006), Glasgow (2010), Montréal (2013) and in Portland (2016). Over three days, friendships are formed, information is shared, and a new generation of people with Parkinson’s come away inspired. There is something special about meeting people with Parkinson’s from other countries, about turning those messenger profiles and email addresses into a handshake or, more often than not, a hug.
This year it’s the turn of Kyoto, the ancient Japanese capital, to host the Congress. Once again, the most inquisitive advocates will mingle with the world’s best scientists and most accomplished clinicians, listening, learning and questioning. There is no environment quite like the world Parkinson Congress and the lasting community built during those three days. And this year will be more remarkable – as a whole new community of scientists and patients will be opened up. New relationships will be formed, new communities created, new perspectives scrutinised as East and West meet. This could be the beginning of something big! This isn’t just a community. It’s a hypercommunity!
Speaking a common language - Winter 2018
Having insight as both patient and scientist, Parkinson’s Movement’s own Dr Jon Stamford celebrates the art of communication and a yen to visit the Far East for the WPC in 2019.
One of my favourite lines in the film Cool Hand Luke is towards the end. Luke, already holed up in a hideaway surrounded by police sharp-shooters, comes to the front door and, in open mockery of the prison camp warden, calls out “what we’ve got here is failure to communicate.” The prison warden immediately closes all further communication by shooting Luke.
Well, things aren’t quite that bad in the Parkinson’s arena, I’m pleased to say. We talk a lot about communication and the need to communicate – specifically the need for patients to be heard and understood by researchers and clinicians. Although this seems essential it has not always been perceived thus. Until recently patients were seen as passive recipients of information rather than active seekers. In large part this was due to the absence of communication channels. There was no way of bridging that gap.
Until perhaps a decade or so ago, scientists spoke to scientists, physicians to physicians and patients to patients. Conferences were constructed on the basis of those communication channels – science conferences for scientists, clinical forums for clinicians and beyond a little ‘tea and biscuits’ socialising, pretty much nothing for patients.
On the whole, the situation appeared to suit each caucus. Scientists were happy talking to each other, clinicians swapped case-notes and the patients finished off the biscuits, unaware that there was anything better on offer. Up until 2006 there wasn’t.
This complacent ignorance was shattered when the first World Parkinson Congress took place in Washington. The brainchild of Stanley Fahn, doyen of American neurology, this inaugural WPC allowed patients, scientists and clinicians to meet at the same conference, in the same sessions even.
Patients could observe the gods of neurology and neuroscience in their natural habitat. Scientists could see the pages of their lab books brought to life in front of them. Graduate students who could barely spell festination watched as patients broke into that characteristic stuttering run. Species that had never met before came face-to-face. It was like Jurassic Park. Or perhaps that should be Jurassic Parkinson’s. Sorry.
When the dust settled and the post conference feedback was examined, it was clear that the conference was a triumph. Patients were ecstatic, the scientists were fascinated and even the gods of neurology grudgingly admitted that they could see some merit in the arrangement.
WPC 2006 was an experiment. WPC 2010 in Glasgow took the experiment further, with even greater integration of the groups. These developments have continued with the meetings in Montréal and Portland. WPC has opened up entirely novel channels of communication. It has brokered relationships between groups and individuals. It has forged friendships and built opportunities. Fundamentally, it is no exaggeration to say that WPC has changed the landscape of communication in Parkinson’s. More than anything it has shown what can be achieved when we bridge that communication divide.
Expectations now are very different from those a decade ago. Scientists want to hear what patients think, and patients increasingly expect to be consulted in every decision that relates to them. Even the most recalcitrant of our clinical colleagues are learning the benefits of listening where previously they would be speaking.
The benefits are there for all to see. Treatments are now designed for patients rather than conditions. Patients lead discussions they once would have struggled to follow. And clinicians ask about aspects of the condition they didn’t even know existed a decade ago. All of this is because of improved communications, leading to a better bridging of that knowledge divide.
This coming year sees Eli Pollard, the current force behind the WPC, pushing the boundaries. Until now the host countries have been English-speaking, on one or other side of the pond. In June 2019 the PD community is off to Kyoto, the ancient capital of Japan. It’s an incredible opportunity, with much to be learned as West meets East. Personally, I’m delighted that I’ll be there as part of the Parkinson’s Movement team, supporting WPC through the Clinical Trials Village.
The scientific world may use the English language as default, but advocates would be well advised to make some kind of effort to at least learn a few stock Japanese phrases. In a country which holds such store in etiquette and manners it will be appreciated and will, no doubt, open doors and start conversations.
Ignore the low hanging fruit - Autumn 2018
In the context of Parkinson’s for instance, we have known about rigidity, bradykinesia, postural instability and tremor. We have known about them because they are easy to identify, easy to characterise and, in simple clinical terms, easy to treat. Results are visible and readily quantifiable by physicians. They are, for Parkinson’s, the low hanging fruit.
Further up the tree, and less readily accessible, are some of the non-motor symptoms of Parkinson’s. These might include fatigue, affective disorders, bowel and bladder control issues, apathy, sleep disorders, loss of sense of smell and so on. And although often nebulous and, in many respects, non-specific, they nonetheless form key parts of the Parkinson’s experience. Indeed for many patients nonmotor symptoms have a larger role in determining quality of life than the motor symptoms.
Yet even nowadays nonmotor symptoms tend to be thought of as an adjunct to the central motor symptoms of Parkinson’s. Somehow they are not considered still to be central to the condition. Even now in 2018 we persist in calling Parkinson’s a movement disorder rather than the broad-spectrum neuropsychopathological condition that it is. We seem to insist on the preeminence of motor symptoms.
But why should this be? Why should we persist with this archaic terminology and its stultifying implications for our understanding of Parkinson’s?
A number of possible explanations come to mind but I like this one – that by placing undue emphasis on motor symptoms, the condition is medicalised. It is taken out of the ownership of the patients and becomes the province of the treating physician. When it is a motor condition, a movement disorder, it is easy for a treating physician to claim therapeutic success and easy for a researcher to study. A reduction in the amplitude of tremor is something numerical and therefore scientific. For nearly 2 centuries since its original characterisation, Parkinson’s has been a movement disorder that is managed by physicians with scarcely a nod towards the nonmotor symptoms.
There is a tendency to believe that the nonmotor symptoms of Parkinson’s are something new or at least newly identified. The derivation and application of scales with which to quantify the nonmotor symptoms has taken them into the spotlight, the point at which the medical research community has begun to show interest.
But nonmotor symptoms are nothing new. In his original essay on the shaking palsy, Parkinson described nearly all of the currently understood nonmotor symptoms of the condition. Parkinson knew they were part of the condition, because he asked the right questions of the patients. Since then nearly 2 centuries worth of physicians have found it more convenient not to ask the right questions. So although nonmotor symptoms have been part – a central part – of the patient experience of Parkinson’s, they have only more recently become legitimate targets for researchers and physicians. Before they were merely irritating distractors, blemishes on their motorcentric views of the condition.
Nonmotor symptoms are often difficult to define as they are often interlinked and therefore hard to treat. It’s relatively easy to improve mobility or reduce tremor but apathy and fatigue remain less amenable targets. But if you ask any patient, you will find that the nonmotor symptoms impinge every bit as assertively on a patient’s quality of life as their mobility. They may be more tricky to treat. They may be less readily quantifiable. They may even be elusive research targets. But they are vital components in the Parkinson’s jigsaw.
I was a researcher in Parkinson’s for more than 20 years before I was a patient. More importantly, I had to become a patient before I really understood this condition. My dozens of research papers as a scientist were testaments to what we could measure in Parkinson’s, not what we should.
We have gorged for too long on the low hanging fruit. It’s time to set our aspirations higher.
An 'a' for awareness, advocacy and action - Summer 2018
In Parkinson’s, as in so many other conditions, we use terms such as awareness, advocacy and activism, often rather broadly; sometimes even synonymously. Yet, to my mind, there are subtle but important distinctions between the terms.
Awareness of the condition is essentially the entry point into the whole spectrum of patient engagement. It is the point at which the person with Parkinson’s begins to develop an understanding, both personal and general, of the condition.
Advocacy is a level up from there. In the context of Parkinson’s, advocacy can be defined perhaps as public endorsement of the importance of research. It is the point at which the person with Parkinson’s changes from being a net recipient of information and/or benefit to a net contributor, in essence sharing their knowledge and experience.
Activism can, on the one hand, be seen as synonymous with advocacy but, to my mind, the term has slightly different connotations. Activism is a more dynamic term, suggesting greater vigour. One might almost think of it as a more forceful, aggressive even, form of advocacy. Activism is also perhaps the form of advocacy most likely to effect action.
Let me explain… The AIDS community is often held up as an icon of the power of patients to exert change. This change was not achieved by gentle advocacy but by forceful activism. A simple Internet search for the term “AIDS advocacy” generates 61,900 hits, while a search for “AIDS activism” finds 186,000 pages, more than three times as many.
This is, of course, a crude measure but nonetheless makes a clear point – people with AIDS are more activists than advocates. And this has translated into tangible results – better access to drugs, improved treatment paradigms and hugely enhanced public understanding of the condition. Indeed, the AIDS community were very much involved in translating AIDS from the death sentence it initially was to a long-term treatable condition.
Similar searches, in the context of Parkinson’s, are illuminating. “Parkinson’s advocacy” yields 5210 pages while “Parkinson’s activism” finds a mere 42. In essence, although we have a community of advocates, we are not necessarily seen as activists. Although it is a simplistic analysis, one could suggest that this inertia is hampering research. The researchers do not know what we, as people with Parkinson’s, see to be the research priorities. Following the AIDS model through, more activists translates into greater action. We are not making the transition. To my mind we need to take that step from polite advocacy to more forceful activism. Because that’s how we will exert action.
At the start of this year, Bas Bloem and Ray Dorsey co-wrote a paper called ‘The Parkinson’s Pandemic – A Call To Action’. It too cited AIDS as an example of a motivated and determined community demanding universal, affordable and effective treatment. Not for them the quiet belief that someone would solve their problem for them.
The AIDS community has shown us the way or, at least, a way. We need to learn from their successes and failures how best to exert leverage on Parkinson’s research and researchers. How can we most effectively make our issues their issues?
We need to come up with the answers. We need you to get involved.