Drawing on their experience as business consultants and personal development coaches, Patrick & Anne-Marie Demoucelle make a blunt, threefold appeal to Parkinson’s disease researchers; meeting patients, adopting business practices, and nurturing positivity, could make them even more effective in their important work — and satisfied in their lives.

When Patrick was diagnosed with Parkinson’s disease (PD) on his 40th birthday, he received mountains of information about what PD is, its symptoms, and its impact.

Of the countless ‘facts’ he was presented with, two statements were especially striking. In fact, they were two conflicting statements. From his doctors, first: “You still should have ten-to twelve (good?) years ahead of you.” From researchers, later: “In ten years there should be a cure…” Which made us wonder: “In ten years, would he be nearing death or be nearly cured?”

We are now 16 years on from his diagnosis, during which time we founded the Demoucelle Parkinson Charity to raise funds for Parkinson’s research, and time has proven both statements to be wrong. Patrick is far from dead, yet far from cured. When Patrick is “on” he wants to shout at the doctors: “I am still alive and kicking!”. When he is “off”, he wants to shout at the researchers: “Where is that f*****g cure?”

Because, quite honestly, what we most want is a cure. As quickly as possible. Because after 16 years with Parkinson’s, life is tough.

Patrick is a ‘fighter’. During this September’s Brussels 20km, he finished in 2 hours 4 minutes, having managed to run for 13.5 km and been pushed in a stroller by a team of friends for the rest. He makes a conscious effort to live life to the fullest. But he’s had to give up so many things that previously brought him joy, such as traveling and attending dinner parties with friends. And even the most ordinary things, like eating and going to the bathroom, have become a real struggle.

So yes, we are desperate for a cure. Quality research is our only hope. We need you! And we have three ideas drawn from our careers as business consultants and personal development coaches, that we would love you to consider. We think these might make you even more effective in your job (and satisfied in your lives).

 The three ideas are: (1) Meet patients, (2) Embrace business practices, (3) Nurture positivity.

Meet patients

As part of our work with the Demoucelle Parkinson Charity, we often visit PD research centers. While there, we make a point of asking “How frequently are you in contact with PD patients?” (polite phrasing) or “Have you met someone with PD?” (direct phrasing). The answer is almost always disappointingly negative. Most researchers say that Patrick is the first PD patient they have met.

How come? Too busy with research? No need? No access? No interest?

Come on, let’s change that right now! How can you work ‘for’ someone you have never met?

Get into the habit of meeting and finding out about who it is that, ultimately, you are working for i.e.  PD patients!

They are the true customers of your PD research project not your bosses, the science magazines, the medical community, the big pharma, or whomever else will purchase the output of your research. The end-consumer is the one who will put the pill into her mouth or have the vaccine injected into his upper arm. Your end-user is the PD patient.

You know, whenever we visit research teams, they tell us how inspiring it is to meet an actual, real, live patient. They say it gives them a motivational boost. It provides such a sense of purpose. Don’t deprive yourself of the opportunity to feel (even) better about your work. To feel that all those hours, days, weeks, months, even years are worth it. (And, patients will be happy – even relieved – to know that you are even more motivated to do what it takes to help find that cure.)

So, go visit some patients, don’t invite them. Observe them closely, don’t look away. Show interest in their struggle by asking questions rather than providing answers. Don’t talk ‘science’, talk ‘human’. Identify what they need, not what you think they need. Learn from them, don’t lecture them. And give them hope (but we’ll come to that in our third message).

Next step: Ask yourself: “Who do I know that is a PD patient and who I could go to see?” Then give him/her a call and set up a visit!

Embrace business practices

We are incredibly impressed by the work researchers are doing. We certainly couldn’t do it, that we know! But, based on our long experience in the corporate world, we feel that many research teams are not yet working at their fullest potential. In our humble opinion, this is simply because they have not (we’d prefer to think “not yet”) embraced the ‘top performance’ practices that so many companies have adopted.

Research is like business in many ways. Both need seed capital (equity or debt) to start-up and then to finance growth. Both are confronted with budgets, cash-flows, and difficult investments decisions. Both have specific cultures. Both require management and leadership skills. Both have a risk of failure. But above all: both involve people and teams.

And that’s where we see a big difference: corporate teams realize that communication, trust, teamwork, cooperation, learning, training, tooling, motivation, rewards, are all aspects of getting the job done that require active management. We’re not sure research teams pay the same attention to these elements, or to put it mildly, give them the same importance.

 Which skills developed in business could be brought into research? We can think of many:

  • Developing a long-term vision and contrasting it with the current reality (including people issues … especially people issues)
  • Aligning the team: getting everyone pointing in the same direction; defining clear operating principles (i.e. how to work together, and how to decide together);
  • Developing soft skills (leadership skills, presentation, and influencing skills, communication skills, feedback skills, facilitation skills, …)
  • Embedding solid HR processes (recruitment and onboarding, evaluation, promotion, comp & ben, …)
  • Coaching and mentoring: for most people there’s so much more in them than what they currently use

Whenever we work with teams (research teams or others) on the topics above, they report back that doing so has helped to take them to the next level. Don’t deprive yourselves of the opportunity to perform even better as a team. (And, patients will be happy – even relieved – that you are even more effective in helping to find that cure.)

So, get into the habit of asking advice from people who know how to deal with the organizational and behavioral challenges you face in your team, especially business leaders and managers. Invite them, don’t visit them. Let them observe you, don’t hide away. Give them a role to play. Reveal your struggles, your weaknesses, and your scars. Ask them many questions and let them provide some answers. Don’t talk ‘science’ talk ‘business’. Learn from them, don’t lecture them. And praise them, congratulate them, be grateful (but we’ll come to that in our third message).

Next step: ask yourself: “Who is an experienced businessperson I could go to and get advice from? Which skills development training or executive education program should I attend?” Book it now!

Nurture positivity

Our third and final message is our very own belief in positivity.

When Patrick was diagnosed with Parkinson’s, it was a serious setback. There was a lot to digest. We didn’t want this diagnosis to be ‘the end’. We wanted to continue having a ‘real life’. So, we started searching for answers. Answers that would allow us to have a fulfilling life – a life ‘worth living’.

What we found is that a positive mindset was key, whatever the circumstances. Ruminating, feeling sorry for ourselves, doubting ourselves, and thinking how unfair it was that this had happened to us, can help for a few minutes, but not longer than that. However, realizing that there were so many things we could be grateful for, believing that ‘life happens for us, not to us’, and making a conscious effort to consider “what can we do right now to create the life we want” have helped us do and achieve some incredible things over these last 16 years.

We appreciate full well that we’re not the only ones encountering setbacks. As a researcher, you encounter a lot of setbacks. It’s part of the job. And just as receiving a diagnosis with PD is confronting, so too are the setbacks you encounter. That’s why we wanted to share some practices that help us to stay positive – perhaps they can help you too:

When something goes wrong:

  • Don’t make it out to be worse than it is. Don’t make it out to be better either. Just see the situation as it is – with its positives and negatives. Often, doing this alone will already make things easier …
  • View the situation in a bigger context. Something might be going wrong – but there are probably many other things that are going right. Acknowledge and appreciate what is going well. Doing so will give you positive energy.
  • Realize that things are happening for you, not to Whatever happens, there is always something good that can come out of it. Look for that silver lining. Make sure you leverage the hidden opportunity and come out ‘bigger’ than before. The idea that something positive can come out of it, will inspire renewed hope…
  • But to start with – surround yourself with positivity. Read positive books. Listen to positive news. Hang out with positive people. Banish the ‘negative people’ from your life – or help them develop their positivity. Marvel at the beauty of life. Identify or create your three micro-moments of happiness every single day.

Positivity will make you happier and more successful.
Positivity is a choice. Make it!

 So, visit positive people, don’t invite them. Observe them closely, don’t hide away. Find out what they think (their convictions) and what they do (their habits). Show interest in their life experience by asking questions not by providing answers. Don’t talk ‘science’, talk ‘real life’. Identify what you actually need, not what you think you need. Learn from them, don’t lecture them. Feel their positive energy, and start feeling positive yourself.

Next step: Ask yourself: “Who is a positive person I could go and visit?” Now give him/her a call!

***

These are our three outside-in messages to you, the talented researchers: (1) Meet patients, (2) Adopt business practices, (3) Nurture positivity. It won’t be easy every day. But there’s one thing we can guarantee you: it is worth it!

Thank you for everything you do to fight Parkinson’s. We need you.

 

Picture 1: Patrick & Anne-Marie at the start of the 20k of Brussels
Picture 2: Anne-Marie visiting a Parkinson’s research lab in Leuven
Picture 3: Patrick & Anne-Marie animating an offsite for a pharma company working on Parkinson’s
Picture 4: Patrick & Anne-Marie testifying about resilience
Picture 5: the cover of our book Positief (Lannoo in Flemish) and Positif (Racine, in French)