Root Cause of Parkinson’s – Taking a Close Look

“Patient is following alternative treatments and has had definite reduction in tremors and rigidity which is visible on exam.  Patient wishes to hold off on Parkinson’s medication which is very reasonable given how she looks on exam.”  

This was the short summary my neurologist/movement specialist wrote in my file after my visit to Kaiser yesterday – and man did it make my day!

This is the same doctor that gave me a definitive, “No,” when I had asked, “Have any patients of yours ever improved?” And I am sure she thought she was doing her job to help manage my expectations when she informed me that Parkinson’s is a progressively degenerative disease and while it’s reasonable to hope to stop progression, reversal and improvement weren’t really possible.  That was 6 months ago.

Despite her previously stated opinion about my prognosis, yesterday she seemed genuinely curious as she began her series of tests to measure my symptoms.  And she began to ask detailed questions about exactly what I was doing.  I had given her a sheet of the protocol I was following and she asked to keep it.  She also agreed to research a couple alternative approaches I was interested in.  

Improvements had been noticed

Although I noticed physical improvements beginning the first of February I’ve been careful not to get too excited given the recent up-and-down nature of my symptoms.  But day-after-day-after-day passed, and the reduction in tremors and greater ease of movement continued.   Then yesterday’s visit to the doctor confirmed what I thought was happening.  The visit somehow made it more real; it validated my belief that I can improve and it gave me confidence to accept that this may be my new normal.

Modern medicine

This whole thing reminds me that there needs to be a big shift in our relationship with doctors.  It needs to be more collaborative.  I acknowledge that there are doctors out there that have already made this shift, but I think that Western medicine still largely looks at doctors as the ones who know everything about what we need.

In her book, Mind Over Medicine, Dr. Lissa Rankin admits that she “had it all wrong.”  She goes on to say, “. . . instead of believing we doctors know what’s best for the body, patients should be diagnosing the root causes of their illnesses and writing their own prescription for what needs to change in their lives.” 

The reason doctors should tap into their patients’ opinions more is that doctors aren’t living our lives for us.  They can’t begin to be expected to know how we feel, the thoughts that run through our heads, the challenges or details of our lives or even our full health histories. 

In her opinion, Rankin thinks it would be better if there is a full paradigm shift where patients would take the lead in identifying the root cause while doctors help patients optimize their use of Western medicine.  She suggests that “once we [doctors] do our best to diagnose, educate, and deliver conventional medicine treatments the patients choose; perhaps we [doctors] belong in the back seat . . . with the doctor acting as a trusted consultant.” 

My experience

My own experience was that my doctors have focused primarily on the symptoms I was experiencing.  They didn’t seem to be as concerned about why this might have happened and never once was I asked why I thought I had Parkinson’s or what treatment I thought might help me.  Instead I’ve had to push the system or go outside my healthcare system to get the help I think I need.

And trust me, once you’ve received a diagnosis of an incurable disease that you have no family history of, you spend a considerable amount of time researching it to try to answer that inevitable question:  Why me?  How did this happen?

No, the doctor’s primary objective is to diagnose and treat – usually with conventional treatments.  With that in mind, I was curious to put the question to people with Parkinson’s – asking them to try to diagnose the root cause of their disease, just like Dr. Rankin suggested.

Survey of Parkinson’s patients

In February 2022 I surveyed over 300 people that have been diagnosed with Parkinson’s disease (on 2 Parkinson’s Facebook groups) to find out why they think they are sick.  Western medicine has theories about what causes it, but they are only theories.  The popular ones are that it is a problem that:

• started in the gut and moved up the vagus nerve to the brain
• is a result of the industrial revolution and increased toxins in our environment, especially agricultural toxins
• is hereditary

The Parkinson’s Foundation admits they don’t know the cause of Parkinson’s.  They say scientists believe it’s a combination of genetic and environmental factors.  But they don’t understand why some people develop Parkinson’s and others don’t.

What you don’t hear very often is that stress or trauma might be the root cause of Parkinson’s (while there is reference to stress making it worse and maybe triggering tremors).  And since that is my working theory – that my stress/trauma is the reason behind my illness – I was curious to see what others thought.  The graph below shows the responses to the question I posed to people diagnosed with PD.

ROOT CAUSE of PARKINSON’S DISEASE

 Question: What do you think the root cause of your disease is? There may be many contributing factors, but personally what do you think the root cause is?

The result?!  The overwhelming majority – 61% – believe it is stress and/or trauma!  Twenty-five percent believe it is the environment.  Seven percent said it is a combination of several of the items listed, 5% said it was heredity and another 2% said they thought it was a dietary or gut issue.

This was an eye opener!   What emerged is that there is a strong opinion among patients that they don’t agree with Western medicine regarding the root cause of their disease.  A clear majority of patients, who live daily with the disease, believe that their illness is due to stress and/or trauma!  And even more surprisingly, this collective opinion was also new information for many of those with Parkinson’s!  One woman wrote: “It’s so interesting to me that so many people say stress.  That’s me too.” 

It seems like we’ve been duped to not trust our own instincts.  And if we started looking more closely at stress or trauma as the culprit, how might that affect how we try to treat our disease or heal?  I’m not saying we should ignore the good research and science being done right now that is suspicious of the environment and dietary issues.  What I am suggesting is that because science still doesn’t understand why we get sick with Parkinson’s, why are we not considering what patients themselves believe is behind their disease? Why are we not more explorative in our search for healing?

Stress and disease

Then again, its’ not news that stress is a huge culprit in the majority of diseases.  The CDC estimates that stress accounts for about 75% of all doctor visits while the Occupational Health and Safety news and the National Council on Compensation Insurance state that up to 90% of all visits to doctors are for stress-related complaints.  Additionally, other respected experts suggest that stress is the cause of at least 95% of all illness and disease.

Maybe stress and/or trauma are affecting our gut?  Or perhaps affecting our immunity to our environment?  Or changing the function of our genes through epigenetic changes we now know are possible.  If stress can affect all of these areas, in the end might we find that stress and/or trauma is in fact the ROOT cause – just like patients now think?

Radical self-trust

I recall telling people after I healed myself last time from lupus and RA, that healing takes radical self-trust.  If you look outside yourself for answers, it’s easy to get confused.  You may be told you can’t heal, you’re crazy, or that you are way off base in how you are going about it. 

Sure, I am uncertain at times.  I take in a lot of information – and often conflicting information – and I am left with the question, “Now what do I do?”  And when that happens, when I am confused or uncertain, I get quiet and listen deep inside myself for direction.

My father

I remember a day when I was a teenager in high school and I was going through a distressing time.  My father pulled me aside to talk to me.  He told me that whenever I found myself unsure of what to do in life, I could always go inside (he pointed to my heart) and find the answer.  He said, “Don’t forget Sheryl.  Everything you need to know is within you.  You can always go to that place in your heart to find your answers.”

He was talking about my Higher Self.  And those words have never left me.  Over the years and in a variety of situations, I have always found Truth in the wisdom he shared that day.

Trust

Even more than trusting my Higher Self, I trust this journey I am on.  I trust that it will lead me to a better place.  In fact, I trust that Parkinson’s is exactly what I need to make me a better person.  And because of that, I am grateful, in advance, for what I will learn and who I am becoming as a result of this journey.

I heard someone talking the other day about their guru.  And I thought, wouldn’t it be lovely to have a guru?  Someone I trusted that was enlightened that could guide me on my path.  That would be so much easier!

It made me start to think about what I might want to look for in a guru?  What would someone who is enlightened offer me?  As I played with the idea I started to make a list of the qualities that I might look for.  Here’s what showed up on my list: 

• Helps direct me inward to my own authentic truth.
• Wakes me up and keeps me focused on what’s important.
• Has my best and highest interests at heart.
• Helps me discover for myself rather than directing me.
• Speeds up the process of awakening to my authentic self.
• Teaches humility, acceptance, love, gratitude and surrender.
• Treats every human equally.

As I looked over the list, something hit me.  What hit me was that I already had a guru.  But it’s not someone, it’s not a person.  I realized that my guru is Parkinson’s!

Parkinson’s has directed me – and keeps directing me – inward to my own authentic truth.  It persistently keeps my attention focused on the important aspects of life.  In its own strange way, I believe it guides me to move toward those things that are in my best and highest interest.  It most certainly leads me to discover for myself!  And it is definitely moving me more quickly toward awakening my authentic self than I would if I weren’t sick.  It teaches me humility, acceptance, love, gratitude and surrender.  And, yes, Parkinson’s will treat people equally, whether you are rich or poor. 

My doctor

My visit to my doctor this month was reinforcing. If I had followed medical advice, I would be taking medication and probably feeling pretty good right now too. (The meds don’t cause problems for the first few years.) But I would have believed that I couldn’t get better on my own. I wouldn’t feel empowered. And I wouldn’t have grown. I wouldn’t have witnessed all the amazing and increasing synchronicities in my life right now that make me believe I am on the right path. And I wouldn’t be as happy as I am right now. I am truly grateful for my life.

With that, I will leave you with this quote by A.H. Almaas:

 “Your conflicts, all the difficult things, the problematic situations in your life are not chance or haphazard. They are actually yours. They are specifically yours; designed specifically for you by a part of you that loves you more than anything else. The part of you that loves you more than anything else has created roadblocks to lead you to yourself. You are not going in the right direction unless there is something pricking you in the side, telling you, “Look here! This way!” That part of you loves you so much that it doesn’t want you to lose the chance. It will go to extreme measures to wake you up; it will make you suffer greatly if you don’t listen. What else can it do? That is its purpose.”