How much do I really want to know?
It’s a question many diagnosed with Parkinson’s diseases will face a number of times along the way. While you can get some guidance from those that have faced it before, no two people ever walk quite the same road with this disease so ultimately each person diagnosed must figure out for themselves just how much they really want to know.
For three years I shoved it to the side before reaching the decision that still drives me today. It was first born out of a feeling of ignorance as I realized that most of my fear of this disease came from not understanding what was going on – why my feet and hands were shaking and why could I not move with the ease I used to. I wanted to know, so I put my career to the side and went out into the world searching for answers.
But learning about all the complexity of the human brain, and just how difficult it is to fix when it starts to break down, while it is breaking down, is anything but abstract. The gift and the curse of Parkinson’s disease is that it gives most who get it enough time to come to a pretty good understanding of it, but you also get enough time to come to a pretty good understanding of it.
The brain is a never-ending Russian nesting doll of complexity, with its own language that itself gets progressively more obscure as you go: axons and dendrites, Lewy bodies and apoptosis, mitochondrial dysfunction and oxidative stress, dopamine transport vesicles and nigrostriatal degeneration in alpha-synuclein preformed fibril models. There is an ocean of information out there that no person one can fully grasp. It can be overwhelming, but trying to understand it does have some pay-off.
For one, it has gotten my foot in the door into places I would otherwise have never been and given me the chance to observe science in action as it pushes forward a frontier of our knowledge. It has also given me tangible hope that soon we will have more effective treatments for this and other diseases. I’ve come to believe that many of the pieces we need to solve it are already out there and that what we need are not just more answers, but also better questions to guide us as we drift, at-times seemingly aimlessly, looking for clues.
It has also empowered me to be able to make more informed decisions about my future. Each person diagnosed will have some very difficult decisions to make about how to manage their disease. From which medications to take and how to deal with their assortment of side effects, to figuring out the best diet and exercise regiments, to whether or not to go forward with interventions like DBS or focused ultrasound knowing that they are far from cure-alls and that they may exclude you from other treatments in the future. Within the next decade we will see a variety of exciting new therapies make it to clinic, from iPS cell replacement, to gene modification, to advanced neuromodulation techniques, stuff that would have been science fiction mere decades ago. But without an adequate understanding of what is happening in your head and what researchers are working on such questions can cause more anxiety than the disease itself and too often get left in the hands of others who cannot possibly understand your disease as well as you could.
Yet, there is also a certain futility to knowing, especially when you learn that it is possible to do everything the experts say and it still may not be enough. You could exercise all day long, eat all the green leafy vegetables there are, get all the sleep you need, and still suffer the slings and arrows of outrageous fortune. And while there is a whirlwind of new developments on the horizon, it is very possible that they may not arrive in time to help you. All of which is further complicated by the frustration that comes from learning how the societies priorities often are not aligned with the needs of patients, such that even if we did stumble across a panacea tomorrow it would take years to get to the people that need it.
But in the end, what education brings, when done right, is the ability to face reality for what it is and not get discouraged if it doesn’t look the way you want it to look. We are just apes flying around on a rock in space, and on that rock there is a bundle of cells in your head that give you your sense of identity and your experience of life. With each passing day that clump loses some of its connectivity that allows you to be, for some that just happens faster than for others. Conscience does make cowards of us all, but perseverance comes from facing reality for what it is and still being able to put one shaky foot in front of the other.
This is a well-written piece. Keep up the good work!
Such an introspective and noble commentary. The nature of the rabbit-hole truly only reveals the endless labyrinth of warrens; your Russian-doll analogy is a relevant one! Having written myself about this for many years, I feel only SOME of your exhaustion (I don’t have Parkinson’s; my husband does). Certainly MRgFUS (focused ultrasound, for those reading) is ablative, so can’t be undone, but DBS can be; or just switched off, so it shouldn’t interfere with future therapies.
Keep fighting dude – I applaud your journey!
Thanks Lisa, on the DBS point though, while DBS may not indefinitely exclude one from a given therapy, it is part of the exclusion criteria for a number of upcoming clinical trials.
Wow and thank you!
Eloquently stated! This resonates with me.
As your voice grows stronger, it penetrates deeper in the souls that need it most.