“I cannot always control what goes on outside. But I can always control what goes on inside.” Wayne Dyer
“Judge a man by his questions rather than his answers.” Voltaire
Setting the Stage:
This is Mariëtte Robijn- She lives in the Netherlands and was diagnosed with Parkinson’s at the young age of 46. Mariëtte has a dynamic and vibrant blog (click here to read it); you should definitely read it.
This is Simon Stott- He is a researcher at the University of Cambridge in England. Simon’s research area is Parkinson’s disease and he writes an astute, educational, and authoritative blog (click here to read it), and I’m a huge fan of his blog; you should also definitely read it. For World Parkinson’s Day in 2017, Simon and I jointly composed a blog post entitled “Milestones in Parkinson’s Disease Research and Discovery (click here to read it).
“Planet Patient vs Planet Researcher (click to read)”- In a recent blog post entitled ‘Planet Patient vs Planet Researcher”, Mariëtte asks an important question: “are we really so very different, we patients and researchers?” As an active and informed advocate for Parkinson’s, her answer was yes. She listed and described 10 points of differences between patient and researcher.
“Planet Researcher to Planet Patient (click to read)“- In a separate follow-up blog post entitled “Planet Researcher to Planet Patient”, as the Parkinson’s researcher, Simon thoughtfully replied to the 10 points highlighted by Mariëtte.
“The task of a writer is not to solve the problem but to state the problem correctly.” Anton Chekhov
“Planet Patient vs Planet Researcher: From Both Sides, Now”: As I read these blog posts, they had a tremendous impact on me. Both were deeply personal, they spoke with passion, and well-intended thoughts. I thoroughly enjoyed reading both posts by Mariëtte and Simon, respectively.
It dawned on me that I could also reply to Mariëtte’s 10 points with the viewpoint of both inhabitants, Planet Patient (since I have Parkinson’s) and Planet Researcher [since I have been in academic medical research for 36 years in the area of hematology-oncology (furthermore, very recently, we have started studying Parkinson’s and our beginning success rate has given us 1 funded proposal in 5 proposal submissions over the past 18 months)]. I reasoned that a dual-reply might offer some additional insight to support and reinforce the opinions of both Mariëtte and Simon.
“Both Sides, Now” was written and sung by Joni Mitchell and it was on her 2nd album from 1969 (I know, I know, this was a while ago). Here are a few lines from the song:
“Rows and flows of angel hair / And ice cream castles in the air / And feather canyons everywhere / I’ve looked at clouds that way.
But now they only block the sun / They rain and snow on everyone / So many things I would have done / But clouds got in my way.
I’ve looked at clouds from both sides now / From up and down and still somehow / It’s cloud’s illusions I recall / I really don’t know clouds at all.”
Both Sides, Now can be interpreted in many ways when you listen to Joni singing it (click here to listen). Maybe she’s saying that life and love just have to be experienced by each one of us, and we’re all going to have different answers/experiences/explanations to these events. Or maybe she’s saying that as we age, our view points and opinions change and evolve. Regardless of its intended meaning, Both Sides, Now is both a beautiful and a classic song.
“There are no extra pieces in the universe. Everyone is here because he or she has a place to fill, and every piece must fit itself into the big jigsaw puzzle.” Deepak Chopra
A List of 10 Differences between Planet Patient and Planet Researcher: As Simon did, I also contacted Mariëtte and received her permission to include the list and her replies (given in italics and normal black text below). Also, as Simon did in his blog post, I will use different color texts for my replies (blue for my Planet Patient and green for my Planet Researcher). And these are my own opinions/remarks.
“Action may not always bring happiness; but there is no happiness without action.” Benjamin Disraeli
The 10 Differences: Mariëtte said “Parkinson’s Research Advocates are dedicated to research that seamlessly matches what you, as a Parkinson’s patient, require. They do all that from their own Planet Patient. And, as an Advocate, you wonder: are we really so very different, we patients and researchers? Yes! And here’s why:”
Patients know what it feels like to have Parkinson’s. Researchers (typically) do not.
From my Planet Patient perspective, my answer is Yes/No. I know what my own Parkinson’s feels like; however, everyone expresses their own Parkinson’s sometimes very differently. Thus, I do occasionally wonder what it feels like to have Parkinson’s. Regardless, its best to focus on today with as little worry about the past but be prepared for the future (see image below).
From my Planet Researcher perspective, my answer again is Yes/No. For many researchers, this thought of how it feels to have Parkinson’s (or any other disease) has not always been in their thoughts for performing their research. I can honestly say that my own research has been based on my family history of cardiovascular events (Parents and other relatives) and breast cancer (a sister); thus, these feelings and rationale have driven me for many years. Regarding Parkinson’s, my experience at presenting at the most recent World Parkinson Congress (Portland, OR) brought me up-close and directly-in-contact with many people-with-Parkinson’s. This was a ‘first-time’ experience for me, and I’ve been presenting at scientific meetings since my mid-20’s. Any PD-researcher would hopefully be moved by such an experience. Come to the next WPC and see firsthand for yourself; it truly is amazing, you’ll know what it feels like to have Parkinson’s.
“Don’t go around saying the world owes you a living. The world owes you nothing. It was here first.” Mark Twain
Patients fear the progression of their disease. Okay, maybe not all of us, but we don’t exactly look forward to it either. In contrast, researchers have nothing to fear – they largely control the progression of their research themselves.
From my Planet Patient perspective, disease progression is a most ‘evil’ phrase and thought. End of story. Although we may wear a mask, this disorder is neither faceless nor simple. In fact, its individual complexity adds dimension to our treatment strategy and for the best outcome. How you and your medical team are managing your disorder is a complex challenge; however, for the most part, we can (hopefully) effectively manage the predator-within-us named Parkinson’s.
From my Planet Researcher perspective, I encourage everyone to read Simon’s thoughtful and thorough reply. Career progression in scientific research is challenged on a daily basis it seems. Consider the difficulty in designing, implementing and interpreting an experiment/study because they usually fail. Science is very expensive; funds are rarely ‘given’ to you, more likely they are ‘earned’ through successful navigation in the competitive field of grant submission. Between 1986-2016, we had a lot of success in getting/keeping/sustaining funds for our research goals (including personnel salaries, supplies, reagents, and equipment). Typically, the lab group consisted of 2-4 graduate students, 2 postdoctoral research fellows, 3-4 undergraduates, 1 research technician and frequently visiting scholars (the pictures below depict our lab group at 3-separate times over the past 30 years). We were fortunate to obtain funding from several sources/agencies/organization: National Institutes of Health (NIH) primarily from these Institutes, NHLBI, NIA and NINDS; the American Heart Association; and the Susan G. Komen for the Cure (logos pictured below). Graduate students and post-docs also helped immensely by not only generating preliminary data for our proposals but also by obtaining their own competitive fellowships/scholarships. It is hard to describe the expectations of University-focused biomedical research; it is even more difficult to describe the amount of effort it took to sustain the career over the last ~30 years.
“Setting goals is the first step in turning the invisible into the visible.” Tony Robbins
Patients cannot simply remove their Parkinson’s at bedtime. They can’t make a mental note to self: Right, I’ll pop these pesky symptoms in the wash basket, hang these ones up on a coat hanger and tidy that other 50 away. Researchers, meanwhile, CAN shed their lab coats at bedtime. Once safely tucked up in bed, you can no longer tell that they’re researchers.
From both of my planets, my bedtime and sleep patterns are altered. One of the most common problems from Parkinson’s for Planet Patient is a sleeping dysfunction, which further complicates our lives as we ponder how to remove the bed cover named Parkinson’s.
And like most in academic research, I have lost an untold number of hours of sleep as Planet Researcher. Here are 3 typical scenarios. (1) When a renewal research proposal receives a fundable priority score but with reduced total budgetary funds available, it remains in limbo and the grant is not funded. (2) You have spent a year or more designing a study, breeding mice, obtaining new reagents (cells, vectors, compounds, etc.), recruiting the people to work on it, and testing the new experimental model system to support a new research idea. And after all of this work/preparation, your first grant proposal submission goes unfunded. (3) You spend 9 months revising a research paper based on the referee’s critiques (suggestions), and you’ve already worked 2-3 years on the science addressed in the paper. However, you have realized their suggestions will improve the paper, and it’s a very prestigious journal. The past 3 scenarios are likely typical for those living on Planet Research; they affect salaries of personnel, the future stability of the lab group, and it’s a part of academic research found on our Planet. Laboratories are typically funded through a competitive grants process (fair but brutal). The reality for Planet Researcher leads to many sleepless nights. Simon’s post expands on several different issues.
“Whatever you do in life, surround yourself with smart people who’ll argue with you.” John Wooden
5 years into Parkinson’s and patients can count themselves lucky if they’re still able to do the same job. 5 years on and some things will have inevitably bitten the dust. 5 years into their glittering research career and researchers can count themselves lucky if they’re not still conducting the same research. Hopefully, their work is bigger and more important than ever.
5 years into Parkinson’s I do count myself lucky because I’m still working full-time. Yes, some things have fallen to the side, several aspects of the world ‘before Parkinson’s’ no longer exist. Time changes us, so does Parkinson’s.
5 years into Parkinson’s my science career is nearing its 37th year with many changes ahead. Truly, its sound strange but Parkinson’s has given me awareness and a better appreciation of life at it is, life at it was. And it led me down a path to meeting many truly remarkable people-with-Parkinson’s, its changed me for the better. My work track seems typical for many in academics; postdoctoral fellow, Assistant Professor, Associate Professor (with tenure), and Professor (with tenure). When I finished my PhD there were only a few paths of work to follow (academic, government, and private sector). Today, there exists the opportunity to work in many different fields of science, and this has changed in a positive way. Yes, we may have over-trained but there exists new types-of-jobs with opportunities that were not even imaginable back in the early ’80’s. However, Simon is correct, the path from post-doctoral fellow to assistant professor is a most difficult path to follow, not for the faint-of-heart. And Mariëtte is also correct in her assessment of life-5-years-into-Parkinson’s, because it is definitely sad the way Parkinson’s can alter ones life.
“If you love what you are doing, you will be successful.” Albert Schweitzer
You’ve not only got 7 million Parkinson’s patient variants, you’ve also got 7 million socio-economic variants. One patient has a scientific education in physical geography, one in chemistry and another no education at all. What you might also forget is: that only a portion of people with Parkinson’s speak and read English. Researchers certainly wouldn’t be researchers without their academic training and they definitely wouldn’t be able to publish their trailblazing papers if they couldn’t speak or read this global lingua franca.
Both Planet Patient and Planet Researcher are in agreement here.
“Don’t ever promise more than you can deliver, but always deliver more than you promise.” Lou Holtz
If you’re on Planet Patient, you can do one of two things. You can wait and see what the doctor prescribes. Or, you can take a hop, skip and a jump to Planet Researcher. Opt for the latter and you’d better not differ too much from the researcher in terms of point 5. Otherwise, there won’t be much to communicate, let alone learn. And, let’s not forget; researchers tend only to issue visas to Planet Researcher when they need a patient or an entire cohort of patients, for some important trial or another. As a patient, you can only hope that you’re permitted to enter prior to the trial’s design.
One thing I’ve learned over the past 5-years since receiving my diagnosis of Parkinson’s is how well-informed and educated the average person-with-Parkinson’s really is. In many instances, that gives the Planet Patient a heads-up when they encounter the Planet Researcher; you come prepared and it is definitely noticed.
I encounter many people-with-Parkinson’s, and I see your point Mariëtte. I also want to remind the Planet Patient that within the PD-world of Planet Researcher, only a few scientists and clinicians actually deal in drug discovery or patient clinical trials. The ‘typical’ PD-scientist probably has no ‘scientific interest’ in direct patient contact; and you know what, that’s a good thing. The ‘bench-to-bedside’ mentality of today is wonderful, but that basic science equation of bench work dealing with protein solutions, cell culture, animal models and so forth are all so crucial to perform. Take away the bench work and the basic elements of discovery, the bedside research that follows withers. Planet Patient needs to be sure the ‘type’ of PD research one is doing because it is the more clinical endeavors that you probably seek to communicate with, although you’d find many supportive voices in the basic-side of PD research I am sure.
“I believe in innovation and that the way you get innovation is you fund research and you learn the basic facts.” Bill Gates
Some inhabitants on Planet Patient are frantically searching for ‘gold’; that one miracle cure that will rid you of your Parkinson’s forever. But usually there’s nothing else for it than to swallow what everyone else is swallowing and to exercise until you drop. On Planet Researcher, the average researcher has just one thing on their mind; to be the first to find that gold. To publish ground-breaking research under their name. It’s an extremely competitive place, Planet Researcher.
I have learned much in 5-years about that ‘pot of gold’. If its out there, I’m going to educate myself, make an informed decision. And after talking to my medical team (Neurologist and Internist) and ‘support-team’, then I’ll either try it or not. But I agree with Mariëtte, today it’s a lot pill-taking and exercising.
I have learned a lot in my academic career, here are a few of things: you are only as good as your last experiment because if you can’t interpret the data then you need to start over; you are only as good as your last lecture because that’s what the students remember, today not last semester; someone somewhere somehow has essentially the same research idea as you, so you can never rest searching for the ‘gold’ because if you don’t find the ore in your own mine shaft, someone else will find it for you. Ground-breaking science is what you want, but what you really hope for is that your work will be reproducible, that it will add to the global knowledge in the field of endeavor, that it gets noticed and others migrate to ‘your’ area because it is timely and relevant, and that it helps get the first or the next research proposal funded/renewed. Like Simon said, “Planet Researcher is a very competitive place.”
“Don’t judge me, you could be me in another life.” Sting
You saw this one coming: money. You certainly don’t earn any money on Planet Patient and your income is constantly under threat. Visits to Planet Researcher are paid for out of your own pocket and conducted in your own time. But I’ve yet to meet the first researcher who works ‘pro deo’. This is a massively underestimated difference between the two planets. The currencies are completely unequal. And I’m afraid that this makes the patient subordinate to the researcher. It’s not only knowledge that’s power, but money too. You can say what you like about patient participation, engagement and goodness knows what being so fantastic, but if you’re not prepared to pay for it, then what’s it really worth to you?
I have to be a ‘combined’ Planet Patient/Planet Researcher (color will be blue-green or cyan) for this response. There is an old saying that ‘there are people who work to live’ and that ‘there are people who live to work’. I am more closely linked with the phrase ‘live to work’. I have never regretted this career choice. It has taken me a long time to understand the how and the why of my academic career successes and advances mixed with the typical setbacks. I have learned the most important part of the research career is the totality of the science (which partly includes training the lab group at their stage of life to do their best, asking relevant research questions, and publishing your science in the best journals possible) because it’s definitely not about the money.
“Time is the coin of your life. It is the only coin you have, and only you can determine how it will be spent. Be careful lest you let other people spend it for you.” Carl Sandburg
9. Free choice
I don’t think I need elaborate on this particular point…
I did not choose to have Parkinson’s; however, how I manage it will be deliberately done until I am no longer here. My choice is to battle on; my genetic profile says to never give up.
At each step of the career-path for Planet Researcher comes a decision or choice of science to follow and job-type to apply for. It may or not be related to your training or your expertise. As Led Zeppelin sings in Stairway to Heaven: “Yes, there are two paths you can go by, but in the long run / There’s still time to change the road you’re on.” If you are interested, the trek to my current academic position went from (1) purifying and characterizing an enzyme from a yeast living in the mouth of a stinkbug that fed on cotton; (2) immobilizing proteases on a glass-surface to make bioreactors that gave an estimate of protein quality; (3) biological chemistry of thrombin in blood coagulation; (4) structure-function relationships of the heparin-binding serine protease inhibitors (serpins) in blood coagulation; (5) biological chemistry and pathobiology of serpins in breast cancer; (6) pathophysiological link of aging to increased risk of venous thrombosis; and (7) discovery and testing of novel cationic anti-coagulant substances. And my work in Parkinson’s is still under-construction but relates to several of the ‘science tools’ described above. Partly, ‘career choice’ is clear from your training and/or personal preference. If that specific field of science ‘lights a fire in you’, then that is your path to follow. Today, a major goal for me is to provide the kindling for both medical students and graduate students to light-their-internal-fire to treat and study Parkinson’s disease in the future, respectively.
“Resisting a task is usually a sign that it’s meaningful-which is why it’s awakening your fears and stimulating procrastination. You could adopt “Do whatever you’re resisting the most” as a philosophy of life.” Oliver Burkeman
Parkinson’s Research Advocates try with all their might to influence the orbit of Planet Researcher. But who are their opponents…or team players if you prefer? Is Planet Researcher populated with multitudes of Parkinson’s Patient Advocates? Other than the paid ‘Patient Participation Officers’?
I have to be a ‘combined’ Planet Patient/Planet Researcher (color will be blue-green or cyan) for this response. We are fighting the same disease, our approaches intersect at numerous places; sometimes it functions well. My first experience with Advocates were on some breast cancer grant review committees several years ago; these Advocates (typically, they were breast cancer survivors) were informed, passionate, educated, engaged and had respect but no fear of the scientists and clinicians during the reviewing of proposals. Likewise today, I know many Parkinson’s Advocates and we both need to become better listeners, and we both need to be better at using our voices together. Joining forces definitely favors success rather than going our separate ways.
“I’m an advocate for whole brain thinking. I’m not an advocate for the right brain or the left brain.” Jill Bolte Taylor
The two planets collide
The good news is that we’re all just people, who all want the same thing. Only you’ve got a different concept of time on Planet Patient. Trials can take years and years, and by the time a new pill rolls out, your dopa has dried up.
The 10 differences above are likely nothing new to you researchers. But please bear them in mind when devising your research programs. Come visit Planet Patient. And ask the local inhabitants: what can I do to help? How about visiting the World Parkinson’s Congress in Kyoto in 2019?
Yes, your words ring true, and I will both (i) be a better Advocate for Parkinson’s and (ii) interact more effectively with other Advocates for Parkinson’s.
Yes, I understand your message ‘loud and clear’; (i) I’ll be more appreciative of the Parkinson’s Advocates I know and (ii) I’ll also be a better communicator with them.
“The three hardest tasks in the world are neither physical feats nor intellectual achievements, but moral acts: to return love for hate, to include the excluded, and to say, ‘I was wrong’.” Sydney J. Harris
Both Sides, Now:
In closing, I appreciate the message in Mariëtte’s original blog post. And I also enjoyed reading Simon’s post. Please know my words are neither a rebuttal nor meant to counter anything stated in Mariëtte’s poignant post. My words reflect my own opinion about Planet Researcher but also it is now housed in the same body as Planet Patient. Thus, I found truth in both blog posts regarding the two Planets. I could not imagine a more meaningful and rewarding career to that provided me in Planet Researcher. In sum, I hope my Planet Researcher experiences will enable me to better navigate my continuing life in Planet Patient; and this helps me to more easily unite both Planets in our attempt to defeat Parkinson’s.
“Have compassion for everyone you meet, even if they don’t want it. What seems conceit, bad manners, or cynicism is a sign of things no ears have heard, no eyes have seen. You do not know what wars are going on down there where the spirit meets the bone.” Miller Williams
Cover photo credit: https://www.costerdiamonds.com/nl/nederlands-bloemenpark-keukenhof/
7 Replies to “Planet Patient vs Planet Researcher: From Both Sides, Now”
Do you recall these quotes or search for them?
I think it’s Ochsner who pointed out the folly of medicine being to focus on the disease the Pt has, rather than the Pt who has the disease.
Thus the convenience of a common disease label (Dr Sherry Rogers) is another folly.
My Dad fit the old fogie scenaio… Mariette, certainly doesn’t. Our FB group now features a majoriety of Mariettes. ALmost marionettes, with strings being pulled dyskinetically…
My Dad might now be in the sub-group of “Tremor Dominant”, apparently a better group to be in.
Although by some criteria he would aso have been disqualified as he didn’t respond to L-dopa or anything else, positively.
Keep taking the Pills – is this credo sacrosanct?
I tried to get an accelerometer (90s) but they were considered a medical device. It remains unknown whether a definitive graph of incessant tremors despite the Pills would have changed the pattern of Rx?
David Ponsonby firstname.lastname@example.org
Excellent work combining the three different person’s thoughts and words. Good job.
Thank you, it was a lot of fun!
Thanks Simon! See you in Kyoto. Unfortunately, I think I’m co-Chairing a session at the same time as your round table session. But I’ll send a suggestion your way soon, Frank