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There is always hope! (PD as a systemic disease)
Hello everyone,
I will share my story that has been difficult for me to write clearly and in its entirety. It is deeply personal and connected to many difficult events in my life. But I will share so at least some of you with PD, early prodromal symptoms of PD, and caregivers will see hope, and thereby take more action.
In December 2019, I went to see a neurologist at a major research hospital for cervical dystonia (CD). I was stooped over in horrific pain and unable to stay still.
Cervical dystonia is a condition where someone cannot control their neck muscles. It is around 10 times rarer than Parkinson’s Disease. However, CD can be caused by some of the same risk factors as PD. Like PD, CD in almost all cases involves dopamine issues in the basal ganglia. In fact, many people with PD also experience dystonia and the related condition dyskinesia, especially while taking L-dopa. Also in CD and PD many of the common prodromal and associated symptoms are similar, like the reduction in sense of smell, memory issues, sleep disturbances, and anxiety. But there is a lot less research data on CD than in PD due to its rarity.
The neurologist told me that CD generally gets worse over 3-5 years and then plateaus. Without any testing, just like the previous neurologist I had seen, he diagnosed me with “idiopathic” (unknown cause) CD. He offered the usual first-line treatment, which is a controlled botulinum toxin injection into various muscles in the neck. The potential side effects included death by respiratory failure, loss of ability to swallow, etc. He also offered me consultation with counseling and painkillers.
Botulinum toxin injection is not a cure for CD, it is a symptom reducer and needs to be injected every 3 months for the rest of the patient’s life. The dosage may need to change location and increase as the CD progresses.
In my case, due to the late age of CD onset and the extreme severity of the disease, the chance of remission was predicted to be less than 5%.
I asked the neurologist what he thought about the high levels of manganese in my blood, equivalent to someone with stage 4 liver cirrhosis. Excess manganese short-circuits the calcium gating channels in dopamine-producing neurons, which causes excess dopamine to be released. Manganese and other toxins can then readily oxidize the dopamine. The oxidized dopamine and manganese can lead to alpha-synuclein aggregation seen in PD.
Manganese has been a known cause of CD in medical circles for more than 10 years.
The neurologist, like the previous neurologist, dismissed the manganese tests as not very useful data.
I accepted a botulinum toxin injection into my neck because I was in such extreme pain and dysfunction. I was desperate. I had been sheltering in my home for months, because even standing was extremely painful. I also had Parkinsonism, which is many symptoms of PD, but with normal levels of dopamine.
The result of the first low-dose botulinum injection: A $9,700 bill, mostly covered by insurance. A midnight trip to the ER in an ambulance. Zero improvement in my neck. That was my last shot of botulinum. I traumatized my whole family.
Fast forward to today, two years later. I am sitting up, pain free, and I have resumed all of my normal activities and am doing medium intensity workouts every day, which is more than I have done in years. I am not on any prescription medications. My sleep is much improved, and I don’t kick at night. My finger twitching is minimal and my motor coordination is significantly improved. My mood / irritability is much better and in fact almost nothing bothers me anymore. Sheltering in place for COVID is no big deal as I actually get to do things I want to do! Even chores are fun!!
So an obvious question is how did I get so much better? The answer is that for the last two years, I have been under the care of two really excellent NDs who are deeply into recent medical research. Unlike MDs, who focus on treating specific diseases, NDs look to optimizing a patient’s health, not knowing the specific cause of someone’s disease. The body has some magnificent detoxification, protection, and immune systems, much more powerful than any drug can be. But if these are not supplied with the proper biochemicals, they cannot function normally. That’s the same reason why people with systemic diseases such as diabetes are at a much higher risk from COVID. The NDs strive to balance these systems so they work properly.
We tend to get more systemic diseases as we age, because of toxic body burden, damage to the liver, etc. One of the most important contributors to systemic disease found in the last 10 years of research is gut dysbiosis, or disruptions to the gut microbiome. The microbiome is the diversity of the trillions of bacteria that live in your gut. The bacteria are not there just to eat and survive in your intestine. They are a vital part of your systems, converting the food that you eat into hundreds of essential biochemicals, including some vitamins. Some of the bacteria also help maintain intestinal structures. If these are not present, intestinal permeability can be high, which allows more absorption of toxins or incompletely digested proteins. These can then cause a cascade of negative effects.
The first ND I went to had me do a bunch of blood tests, and an extensive toxic exposure and symptom history on the first visit. High manganese, high viral titers, and vitamin D deficiency came up on the first round of tests He told me that the high manganese was extremely rare and not something he knew much about. However, he knew it was a likely contributor to my CD and Parkinsonism, as were immune system issues that could potentially improved by raising my vitamin D levels to 60-80 ng/mL. He also worked on my gut dysbiosis (which is what caused my poop to keep changing) using probiotics. We also upped my level of antioxidants like vitamin C, E, beta carotene, and melatonin.
My dear wife also helped me change to my diet, eliminating high-manganese foods like hazelnuts and spinach. We increased my intake of lettuce, carrots, sweet potatoes, and other whole foods, and I had a small amount of chicken with each meal.
I also bought a bunch of HEPA air filters and we close the windows when there is pollution or a train runs nearby. Research shows that inhaled airborne manganese can deposit into the basal ganglia through the olfactory bulb. Living near (approximately half a mile) from ferromanganese plants for many years is a significant risk factor for getting Parkinson’s Disease. Steel-processing plants are a similar risk.
My NDs didn’t claim they knew what caused my CD. But they were adamant that I needed to boost my body’s defenses against systemic disease. We knew my genetics were a big factor, as both my father and his father had forms of debilitating dystonia. But, one can modify the expression of their genes by staying healthy via epigenetics. Epigenetics is currently a hot topic of scientific research.
For me, having vitamin D levels near 80 ng/mL over a few months is probably what brought the biggest symptom improvement. The National Institutes of Health would consider this level “potentially toxic”, but more modern advisories published by international organizations would consider it ideal. In fact, yet another European country has recently started fortifying vitamin D into everyday foods.
Vitamin D deficiency can cause underproduction of SLC30A10 proteins, the only known natural way for you to expel excess manganese. This is an example of epigenetics.
Vitamin D deficiency is also associated with Restless Legs Syndrome, and in research supplementation with rather large amounts of D helped tremendously with symptoms. Research shows vitamin D deficiency is also associated with Generalized Anxiety Disorder, and with… Parkinson’s Disease.
Finally, just a few months ago, a study was published showing a strong connection between CD, gut dysbiosis, and low vitamin C. Proof of the connection that the NDs had implied, but not known for sure.
To sum it up, I believe many of us can improve our health and disease progression by eating right, exercising, reducing toxic exposures, and fixing our gut biomes. It is never too late to start and don’t let genetics hold you back.
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