By WOJCIECH WASILEWSKI
Pricey Reader, in case you’re in search of one thing mushy and straightforward, please purchase a distinct e book. This one isn’t right here to consolation you — it’s right here to shake your lazy world, to shock you, to pull you out of the identical lethargy I used to be trapped in for years after being recognized. Should you really feel anger, insurrection, or perhaps a surge of motivation whereas studying, then it was value writing this book, every hour. Parkinson’s isn’t well mannered — and I gained’t be both. That is my warfare manifesto towards Parkinson’s.
All through this book, I take advantage of the phrase “Parkinson” as shorthand for Parkinson’s illness, not as a reference to James Parkinson, the physician who first described it. If that looks like an oversimplification — I apologize. However belief me, it’s the least essential factor right here.
Individuals at present are trying to find actual tales — not textbook definitions, sterile medical jargon, or sugar-coated tales of struggling. You gained’t discover any of that right here. What you’ll discover as an alternative is one thing way more useful: the reality. Uncooked, unfiltered, typically brutal, typically even vulgar. Why? As a result of that’s what this illness actually is. That’s the type of relentless struggle you’ll want in case you don’t need Parkinson’s to steal your life, piece by piece. I’m not afraid of that struggle — and that is precisely what this e book is about. I would like you to cease being afraid and to imagine you may get into this struggle too.
This isn’t a scientific e book. I’m not a health care provider. I don’t have a PhD. I’m not an “professional” who seems on morning TV. I’m only a affected person — such as you. Somebody who heard the analysis and, as an alternative of quietly accepting it and ready for the tip, selected to struggle again. And an important half? After years of wrestle, I’m dwelling proof that it may be completed. This isn’t principle — it’s my sweat, my ache, my setbacks, and my comebacks. If you wish to learn the story of somebody who curses Parkinson’s out loud on daily basis and refuses to let it win — you’re in the appropriate place.
If you wish to hear the voice of somebody who checks each potential technique to claw again another day of regular life from this illness, somebody who isn’t afraid to talk the reality and take dangers — this e book is for you. That is my declaration of warfare on Parkinson’s. And in case you’re prepared to affix me on this struggle — come on board. As a result of to reside properly with Parkinson’s, you need to fully change your way of life. That’s precisely what this e book is about.
PARKINSON’S AFFECTS THE YOUNG
I’m speaking to you — the one that typed into Google: “Parkinson’s and bodily exercise,” “food regimen and Parkinson’s,” “how you can cease Parkinson’s,” “are you able to get better from Parkinson’s,” or “can younger folks get Parkinson’s.” Should you’ve landed right here, you’re trying to find solutions. I’m no miracle employee. I don’t have magic drugs or secret formulation. I do have one thing higher although — actual methods that work for me. Not only for me.
This isn’t an educational thesis. This can be a battle information. A survival handbook. It’s about resisting this illness, outsmarting it, slowing it down, exhausting it. It’s about clawing again another day of regular life — and doing it another time tomorrow.
what annoys me essentially the most? That almost all of individuals nonetheless suppose Parkinson’s is a illness of previous males sitting on benches outdoors their residence buildings. That’s simply not true. Increasingly younger folks — individuals who ought to have their entire lives forward of them — are being recognized. After which what? Worry. Panic. The crushing feeling that the whole lot is over. Docs not often have time to clarify what’s actually happening. And the web? It hits you with nightmare eventualities — movies of individuals shaking so violently they’ll’t even raise a spoon. Nonetheless, that’s not the complete reality about Parkinson’s.
For youthful folks, Parkinson’s is a totally totally different struggle — a distinct tempo, a distinct strain, a distinct type of warfare. They’re those who this e book is for. For folks of their 30s, 40s, and 50s, with households, careers, desires, and plans — all of which Parkinson’s is attempting to tear away. We don’t need to let it occur. We will struggle again.
WORDS OF CRITICISM FOR THE CRITICS
I can already hear the noise — the mocking, the scoffing, the eye-rolling. Critics saying there’s no scientific proof, that possibly one thing did work for me however gained’t work for anybody else, that it’s all clichés and empty phrases. Perhaps my Parkinson’s is ‘faulty,’ they’ll say. Or possibly I don’t even have it. Or I simply acquired fortunate and ended up with the mushy model — , Parkinson’s Lite.
To all of the critics who will declare that nothing on this e book works, I’ve just one factor to say: Carry on clucking.
After I first determined to struggle Parkinson’s, my situation was declining quick. I had muscle rigidity. I might barely stroll. My left arm didn’t swing. I felt that heavy-leg fatigue, and my tremors had been intense. I handed out twice — each instances collapsing within the rest room. Then I underwent the FUS process, and it considerably lowered the tremor in my left hand. That was the second I spotted I needed to change my life. And so started a gradual however highly effective transformation.
I HAVEN’T WON THE WAR
Let’s be clear, pricey Reader: I haven’t gained the warfare towards Parkinson’s — not even shut. Scripting this e book, after working full-time as an analyst for eight hours a day, takes a toll on me. Sitting on the pc for hours briefly worsens my signs. Simply this morning, I awoke in ache — arms, legs, again, the whole lot.
And what did I do? First I went for a lightweight three-kilometer run. Subsequent I took a freezing chilly bathe. Then I had a wholesome breakfast. These easy steps and similar to that — my physique got here again to life.
Now let me ask you, pricey Critics: what would you have got completed in case you had woken up feeling the way in which I did this morning? Would you have got popped one other painkiller? Slapped on a ache patch? Perhaps relied on a pump delivering dopamine straight into your intestines?
Inform me — which one in every of you may give me a straight reply about what my life will appear like in 5, ten, or twenty years? None of you’ll be able to as a result of trendy drugs doesn’t suppose long-term. It treats signs — not causes — and it offers with them solely now, not tomorrow. So how lengthy will I final on this ‘dopamine from the pump’? I’ve been dwelling with Parkinson’s for nearly a decade. How shortly does my physique develop tolerance to every new dose? What are the long-term unwanted side effects?
Will I find yourself like my buddy with superior Parkinson’s — so overmedicated he sees animals on his mattress and suffers from terrifying hallucinations? What occurs to me in twenty years if I observe your playbook of escalating doses and stronger meds that deal with nothing however masks the whole lot?
A few of you would possibly say, ‘What about DBS?’ Nicely, right here’s the reality: Deep Mind Stimulation helps some signs, but it surely worsens others. Speech? Reminiscence? They typically worsen. DBS is outdated, invasive, and — not less than in Poland — poorly maintained. So no, it’s not the silver bullet both.
MY BODY AS THE PROOF
My physique is the most effective proof I’ve — nonetheless unscientific — that way of life change is usually a highly effective instrument on this struggle. The distinction between how I used to really feel and the way I really feel now could be motive sufficient to share my story.
Earlier than anybody thinks about stem cell remedy or gene modifying — remedies that may assist however might simply as simply hurt — why not attempt one thing obtainable to everybody? Bodily exercise. A life-style overhaul. As a result of this illness hates motion. It thrives on stillness, dependency, and inactivity.
Sure, somebody would possibly quote a research claiming bodily exercise doesn’t all the time ship. Perhaps that’s true in some circumstances. Even so in animal fashions, it helps. What about research on people? Let’s be actual — they’re restricted and never fully dependable. Why? As a result of you’ll be able to’t power somebody who’s severely unwell to observe a strict, demanding train routine. However I did. And it modified the whole lot.
THE HONEYMOON PERIOD IS OVER
Now let me say one thing that may shock just a few and piss off the remainder: although my so-called ‘honeymoon interval’ — that golden section when meds work like magic — ended very long time in the past, I’m nonetheless doing properly. The truth is, I’m in higher form than many newly recognized sufferers.
How is that potential?
As a result of as an alternative of crying over the misplaced ‘honey,’ I started working. I finished chasing miracles and realized the one miracle I can depend on is the one I create myself. No tablet will ever exchange a liter of sweat spilled in coaching, a deep breath of unpolluted air, or a plate of actual meals.
The honeymoon is over — however I’m not. So long as I can transfer my arms, my legs, and what’s left of my dopamine system, Parkinson’s won’t win. So in case you suppose that after these early ‘golden years,’ it’s all downhill — you’re lifeless flawed. That is when the actual battle begins. It’s as much as us whether or not we crash or climb.
On the finish of this e book, I’ve included a fast and sensible information how you can handle a few of Parkinson’s signs at house — easy instruments, habits, and actions that may make an actual distinction.
MY STORY THE WASTED EARLY PHASE
I used to weigh 130 kilograms. I lived on junk meals and spent most of my time mendacity on the sofa, glued to the TV. Then Parkinson’s got here alongside — and flipped my world the wrong way up.
I used to be recognized with Parkinson’s illness on the age of 36 or 37 (I’m 45 now). At first, I didn’t imagine it. I believed the docs had made a mistake. I stored hoping it was one thing else — anything. However the analysis was confirmed by a DaTSCAN. There was little question.
One in all Poland’s main neurologists, Professor Andrzej Friedman — for my part, an impressive professional on Parkinson’s — confirmed it: I had young-onset Parkinson’s illness (YOPD), affecting the left facet of my physique.
So what did I do with that info? Nothing. For the primary 4 years, I wasted time. I sat on the sofa, I cried, I did nothing however watch TV. I let my dosage of levodopa–carbidopa improve whereas my well being slowly declined. I used to be caught — bodily, mentally, and emotionally.
SEARCHING FOR INSPIRATION
Then got here a second of reflection. I had two selections — quit or struggle. I selected to struggle. Trying on the instance of Michael J. Fox and others dwelling with Parkinson’s, I spotted one thing essential: the street to success is lengthy, winding, and filled with obstacles. You may have all the cash on the planet, entry to the most effective docs — and nonetheless lose to this illness.
For my part, the one possible way ahead is to fully overhaul the dangerous, self-destructive habits which are breaking down your physique. That’s what I got down to do. I started trying to find information, for inspiration — for one thing to carry onto.
One of many first issues I got here to know was that weight problems and Parkinson’s illness are a horrible mixture. I used to be merely consuming my disappointment, consuming my despair. I didn’t have the information or the time — or possibly simply the power — to observe a correct food regimen. There was all the time that magical phrase: ‘I’ll begin tomorrow.’
THE TURNING POINT
At some point, I spotted I couldn’t preserve suspending the exhausting determination to vary my way of life. So I began — with weight reduction. As a result of truthfully, it felt like the simplest place to start with. I stored it easy. I lowered the calorie content material of my meals and launched one thing referred to as a ’feeding window’. One primary rule: eat lower than 2,000 energy a day, solely between 8 a.m. and three p.m. That was it. I didn’t lower out any meals teams. I didn’t quit sweets — I simply ate them moderately. On high of that, I began strolling and doing yoga. The outcomes had been staggering: inside a yr and a half, I went from 130 kg to 80 kg.
THANKS TO PARKINSON’S, I HAVE NO OTHER DISEASES
Unusual as it could sound — I’m grateful to Parkinson’s for this transformation. It could have saved me from diabetes, coronary heart illness, and all the opposite well being issues associated to extreme weight problems. After that breakthrough, I stored going. I stored experimenting with my very own physique, regularly introducing increasingly more adjustments. I modified the whole lot — my food regimen, my bodily exercise, my sleep, even my psychological lifestyle. Was it simple? No. It was brutally exhausting.
But at present, after eight years of dwelling with Parkinson’s, I’m in higher form than many individuals who had been recognized extra not too long ago. The truth is, I’m in higher form than I used to be years in the past.
My situation hasn’t progressed. I haven’t elevated my treatment dosage in years. I at the moment take three tablets of Nakom 250 mg through the day and two tablets of Madopar HBS 100 +25 mg at night time. Perhaps I’ll even be capable of scale back that comparatively excessive each day dose and nonetheless really feel good.
On daily basis, I make the identical alternative: it’s me — not Parkinson’s — who runs my life. And if I can do it — so are you able to. Everybody has their very own model of ’Parkinson’s.’ It’s not nearly sickness. Everybody has one thing that holds them down — some worry, some burden, some invisible weight. Should you can overcome Parkinson’s, you’ll be able to overcome something.
WHAT IS PARKINSON’S DISEASE?
Most individuals suppose Parkinson’s is easy: lack of dopamine — give dopamine — drawback solved. Nonsense. That’s like taking a look at a burning home and saying, ‘Simply pour water on it, and the whole lot will likely be wonderful.’ Nonetheless, what you don’t see is that the fuel exploded within the basement, the wiring is fried, and the inspiration is collapsing. Parkinson’s isn’t just about dopamine. It’s a full-body power disaster that impacts each cell — not simply the mind. Each cell in your physique — out of your mind to your muscle groups to your coronary heart — depends on one factor to perform: mitochondria. These tiny energy vegetation create the power (ATP) that fuels each motion, thought, and heartbeat. The extra wholesome mitochondria you have got, the extra power (ATP) your physique can produce. And the extra ATP you have got, the extra power, focus, and vitality you are feeling.
PARKINSON’S DAMAGES MITOCHONDRIA
However then Parkinson’s creeps in like a thief and begins sabotaging these energy vegetation. Within the our bodies of individuals with Parkinson’s, mitochondria are broken and weakened. They produce much less power and age sooner. Meaning your cells are working on empty. Much less power means much less motion, much less readability, much less life. You are feeling it as continual fatigue, that lead-like heaviness, mind fog, the lack to get off the sofa. It’s not laziness — it’s mitochondrial failure. And it will get worse. Broken mitochondria additionally produce poisonous waste: free radicals. These unstable molecules assault wholesome cells like smoke flooding from a damaged engine. Your physique will get poisoned from inside. This units off a vicious cycle: free radicals destroy extra mitochondria, which then produce much more poisonous waste, accelerating cell loss of life — particularly within the mind. Parkinson’s doesn’t start in your palms or ft. It begins deep inside your cells, the place your mitochondria — the engines of life — begin breaking down. That’s why dopamine treatment alone isn’t sufficient. You may flood your system with dopamine, but when your cells don’t have the ability to make use of it, it gained’t take you far. It’s like pouring premium gas right into a automobile with a cracked engine block. The pistons would possibly transfer a bit, however you’re not going wherever.
Scientific analysis backs this up. A Danish-German crew discovered that harm to mitochondrial DNA (mtDNA) performs a key position within the growth of Parkinson’s illness. They found deletions within the mtDNA of sufferers, particularly in mind areas chargeable for cognition. In lab experiments on mice, they confirmed that mitochondrial harm results in the identical pathological adjustments seen in Parkinson’s. This might result in new diagnostic instruments, biomarkers, and ultimately higher remedies. In brief, mtDNA is the genetic blueprint of your mitochondria. When it will get broken, the whole lot begins to interrupt down — and Parkinson’s is only one potential end result. These disruptions hit nerve cells the toughest, as a result of they want big quantities of power to outlive. When that power vanishes, the cells start to die. That’s when neurodegenerative ailments like Parkinson’s begin to take maintain.
These problems are particularly damaging to nerve cells, which want huge quantities of power to perform. When that power provide breaks down, neurons start to degenerate — and that’s what results in neurodegenerative ailments like Parkinson’s.
LIFESTYLE CHANGES CAN REPAIR MITOCHONDRIA
Food regimen, motion, sleep, toxin elimination — all of those have a direct influence on power manufacturing on the mobile stage. Your mitochondria aren’t static. They’ll regenerate, multiply, and turn into stronger — however provided that you give them a motive to. That motive is bodily effort, deep respiratory, clear vitamin, and intermittent fasting, which prompts a strong mobile course of referred to as autophagy (we’ll come again to that later within the e book).
Parkinson’s isn’t only a mind illness — it’s a complete warfare, fought in each single cell of your physique. Each step you’re taking, each aware breath, each drop of sweat sends a sign to your system: “We’re nonetheless within the struggle. We want power. Begin rebuilding.”
What in case you sit nonetheless and complain? Your mitochondria get a really totally different message: ‘We’re completed right here. No want to provide something. Shut all of it down.’
And if there’s one factor mitochondria really hate — it’s sugar. Sugar clogs them, weakens them, and slowly destroys their skill to perform. It’s the final word enemy of your mobile engines.
This e book isn’t about hope — it’s about motion. Should you’re bored with ready for miracles, begin making your individual.
To Beat Parkinson’s, You Must Stand on Your Head is accessible now.
Wojciech Wasilewski is a Polish creator and fairness analyst dwelling with Parkinson’s illness — and combating it with radical way of life change.
