What we hope to achieve: To achieve a complete remission/cure of the symptoms of Parkinson’s Disease in my wife, Naveela Saleem.
Test subject: Naveela Saleem
Naveela has suffered from Parkinson’s for 18 years now, and her condition had deteriorated to the point where she could not perform even the simplest functions (rising, lying down, grooming, eating, etc.) without assistance. While physical and muscular deterioration was severe, she had suffered negligible loss of mental faculties and ability to speak. She has never been on synthetic l-dopamine drug therapy or botulinum toxin to relieve muscle cramping.
After trying several other alternative approaches, she initiated an approach developed by Dr. Hinz in mid-2017, that comes out of functional medicine. In addition to her exercising and walking every day, the therapy consists of her taking the following:
Over the course of six months on this therapy, she showed remarkable improvement in being able to conduct daily self-maintenance activities, which were completely out of her reach before the therapy was initiated. On her own, she was able to walk at a good pace for one hour and exercise on the rowing machine for 45 minutes; with the help of a caregiver, she was able to do her breathing and range of motion exercises. Her ability to feed herself was also improving, in that for two of three meals out of the day, she was able to manage the silverware on her own; and other activities were also showing improvement. The only noticeable side effect was a weight gain of some 40 pounds, but this could be related to improved nutrient absorption as a result of the therapy.
Early on during the deterioration phase, the fingers in her right hand (though not her thumb) became hyperextended, and much range of motion was lost so that basically she was not able to use her right hand for any useful or meaningful activity. Dr. Hinz’s therapy did not make any significant impact on this aspect of the condition. To try to get the hand to open up a little bit, she has tried to squeeze chew toys (for pets) and hold rolled-up face towels in that hand; she has also tried brain games (Lumosity) and puzzles to improve the brain’s ability to manufacture new cells, in the hope of improving her overall condition.
Sadly, however, over the course of the past several months (a couple of months before the coronavirus pandemic hit the United States in 2020), it appears that the Hinz therapy has reached its limit in being able to provide additional benefits. In fact, the mucuna at the high doses Naveela has been taking has begun to produce side effects similar to those exhibited in patients who develop drug-induced Parkinsonism: dyskinesias, insomnia, dystonia, etc.
Our goal has been to improve her body’s ability to produce the deficient neurotransmitters on its own and to revive any of the brain cells that may have lapsed as the deterioration process started, so that at some point she can taper herself off the medicine, while retaining all of the lifestyle adjustments. Unfortunately, in retrospect, I misapprehended the Hinz approach thinking that we would be able to taper her off the mucuna pruriens extract and replace that with amino acids; however the approach is intented for the patient to take the combination of amino acids and mucuna pruriens permanently.
Articles in the medical literature suggest that the symptoms she is now experiencing due to drug-induced Parkinsonism (not the same as Parkinson’s Disease) may be permanent due to the damage done by high doses of mucuna on certain portions of the brain, chiefly the substantia nigra portion right above the brain stem. However, we live in hope that my misguided decision to employ this therapy three years ago (which is not a long time to have been on oral l-dopa) has not lasted a long enough duration to cause permanent or irreparable damage. We are hoping that Naveela’s brain can resuscitate the potentially damaged brain tissue, or perhaps her brain can compensate for what has been lost by activating other brain tissue. There is support in the literature for the latter, as the brain has been known to provide such compensation in stroke victims.
As the drug-induced Parkinsonism symptoms are now being caused by the mucuna pruriens extract, a key element of the strategy moving forward is to gradually taper her off the mucuna pruriens powder in the amount of 100mg/wk/dose (she takes two doses/day). This equates to a 1g reduction in each dose every 10 weeks. At this rate, it would take some 60–80 weeks for her to be completely off the mucuna pruriens powder. We will have to make an assessment every 10 weeks to determine whether this rate can be accelerated or should be slowed down. Nonetheless, once reduced, at no point do we expect to increase a dose of mucuna powder.
However, in order for us to have a chance at maintaining this pace consistently and regularly Naveela’s brain has to respond by replacing the potential oral dopamine with dopamine and other neurotransmitters that her own brain is producing. My own latest readings on the subject point to the notion that Parkinson’s Disease is symptomatic of a life that is out of balance mentally, physically, and spiritually. Such a life is often afflicted by fears, regrets, and negative self-judgement. Physiologically, this attitude puts the body and the brain in constant flight-or-fight mode, constantly firing adrenaline. The adrenaline pump in the brain turns off the dopamine faucet, and always being in flight-or-fight mode causes the dopamine producing centers of the brain to atrophy or misperform. And this also begins to affect other major organs of the body, particularly in Parkinson’s disease, the liver, the kidney, and the large intestine — hence, the constipation and frequent urination that is associated with Parkinson’s in addition to the rigidity and muscle spasms, which are an outcome of a liver not functioning to remove toxins from the blood. Oral dopamine does not regulate the flow of adrenaline and dopamine in the way the brain does, and so the objective here is to employ whatever approaches and therapies we can to induce Naveela’s brain to produce its own neurotransmitters.
To this end, we will implement the following approach to relieve Naveela of all the major stresses that are causing disease (that is, keeping her in adrenaline mode):
Insofar as the diet is concerned, we started her on a ketogenic (paleo) diet on 9-1-2020. One of the benefits of this diet is that as the body gets used to metabolizing ketones instead of sugars, it will supercharge the production of mitochondria (energy producing organelle inside a cell) in the brain cells that seem to die off or are made dormant in Parkinson’s sufferers. We are hoping that the mucuna powder did not irreversibly damage these cells and that their performance can be recovered or compensated for. After two months on the diet, one of the benefits we have noticed is that Naveela is having a bowel movement almost every day of the week. We have not seen this in several years of trying to manage the constipation effectively. Additionally, we have a medical herbalist, Geo Derick-Giordano, supporting our efforts with certain herb formulations designed to rebuild and/or improve existing dopamine receptors in the brain, to reduce some of the tremors, and to help Naveela sleep through the night. Lastly, we expect to be using an ayurvedic laxative to help with relieving the constipation.
As for the physical and emotional stresses, we are going to employ Howard Shifke’s Recipe for curing Parkinson’s Disease, an approach he discusses in detail in his book, Fighting Parkinson’s …and Winning, and on his website Fighting Parkinson’s Drug Free (www.fightingparkinsonsdrugfree.com). The physical part of the Recipe is designed to heal the organ systems most affected by Parkinson’s so that the brain is no longer burdened and free to produce dopamine and other neurotransmitters on its own. This concentrates on Qigong exercises for the liver-gall bladder, kidney-urinary bladder, and lungs-colon. This Traditional Chinese Medicine (TCM) approach is designed to properly align the body’s electrical and magnetic fields so that it can properly conduct the electrical impulses driving healthy brain activity. The emotional and spiritual part of the Recipe focuses mainly on attitude adjustment in a way that self-affirmation replaces self-criticism; acceptance and forgiveness replace regret (the past is not a blueprint for the future); gratitude for what we have today replaces fear (that is, there is no such thing as a bleak future; such a view is just a mirage — or the future can be shaped by taking advantage of the moment we have today). In addition, we expect to improve neuroplasticity with brain games in Lumosity, and by doing physical exercises that involve the brain in a more hands-on fashion, such as Rock Steady Boxing, tai chi, and yoga.
Notice that in the above strategy, I am trying to emphasize “cure” over “symptom management” going forward. That is why there is nothing in the above about giving Naveela a cocktail of drugs. This is because Parkinson’s is an electrical problem (brain circuitry) and not a chemical problem. TCM is well-positioned to address Parkinson’s Disease when looked at in this manner; and then the other aspects of our strategy above are designed to hopefully drive Naveela to full and vibrant health, and keep her in that state.
To accomplish all of the above and monitor how we are making progress, the hope is to use this ShuraForAll forum to reach a decision on the strategy above, and then soon thereafter implement the healing process that Naveela has already embarked upon to some extent.
The core work in every shura
Crafting a good strategy and executing it is part of the core work in every shura.
When we use the word strategy we are referring to active problem solving.
So, for example, when a person starts a shura, she tries to provide an insightful context that helps participants understand the challenge being introduced.
This includes uploading as many relevant documents as needed to deepen everyone’s understanding.
Accurate and concise problem statement
Strategy begins here, with an accurate and concise problem statement description.
Once suitably informed, participants actively engage in dialogue to determine the best course of action to take. The focus is on trying to determine what is the most important part of the problem that needs the most attention.
Emphasis is on “most important.” The selected course of action guides all subsequent actions, ensuring that they reinforce each other. This is what adds strength to strategy.
Keep everyone informed
Then the work of the shura shifts to the Deliver phase. This is where all participants are expected to commit to entering and carrying out action steps that help accomplish objectives.
Only the important action steps should be entered. Even though some participants may think that every action step is important, they must be prioritized. The top priority steps are the most important.
As part of the strategy execution process, they must be entered before the task is performed.
This allows other participants to see what action steps are intended to be carried out. It helps inform them of the thinking that is behind the planned actions before actually using the time and resources to perform them.
Now comes the hardest part. We have to follow through on what we say we are going to do. And we need to hold everyone accountable.
All of this is what helps make a shura successful.
The person who starts the shura is called the shura initiator and is responsible for explaining the shura context and providing a timeline for completing its phases of activities. This information is displayed in the Overview section. All text in this section is indexed to optimize search results to make it easy for users to find your shura. So, be sure to include all the important keywords in this text.
Following this, the shura moves to the Discuss phase where all participants share their points of view on the issue as they recommend various courses of action to take. They are expected to provide evidence in the form of linked references or uploaded files to support their viewpoints.
After the discussion time period has ended, the shura moves to the Decide phase. Here is where each person selects their preferred course of action based on their best judgment. The ShuraForAll tool will compile selections and present the results to everyone. Once the course of action is agreed on, the shura effort moves to the Deliver phase.
This is where participants try to put the selected course of action into motion by setting objectives and carrying out action steps. Each person either joins an existing team or starts a new team and then performs the work. ShuraForAll charts the progress along the way, letting everyone know how things are going.
Each shura displays a set of metrics that inform all participants how things are going. Below each shura phase (Discuss, Decide, Deliver) icon is a score that indicates overall performance.
For the Discuss phase this metric is the ratio of the number of unique participants who have submitted at least one comment to the total number of participants in the shura.
For the Decide phase this metric is the ratio of the number of unique participants who have selected a preferred course of action to the total number of participants in the shura.
For the Deliver phase this metric is the ratio of the number of unique participants who have self-assigned at least one action step to the total number of participants in the shura.
As work is performed in the Deliver phase, the tool automatically calculates the Achieve Rate metric for each participant. This is a measure of completing the action steps that are given a higher weight or greater priority. A higher Achieve Rate indicates that the person is completing the more important action steps.
Since a participant can work on more than one team, the Achieve Rate is calculated in the context of work performed for each team, as shown below.
The Achieve Rate is also calculated as a composite score for all the participants who are working on a given team. This score is a measure of team performance.
Additionally, the Achieve Rate is calculated as a composite score for all the participants who are working on a given objective. This score is a measure of objective performance.
An example of objective level and team level performance Achieve Rate measures is displayed in the Shura Profile Report. This report is generated for each shura and is updated in real time as work is performed.
Both the Shura Profile and the My Profile Report can be produced by selecting each from the user menu.
An example of My Profile Report is shown below.
All reports represent progress made up to the point the report is produced.
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