April, Parkinson’s Awareness Month, is in its final week and I have received many emails and messages asking for donations to support research into finding a “cure”. These messages have come from Parkinson’s organisations, some dedicated to finding a “cure”, plus via a number of professional and disease-specific social media pages.
I have not received one message suggesting research into RECOVERY strategies or fundamental aetiological pathways leading to neurodegeneration. Even the most technical papers and appeals from Universities and respectable research organisations seem to look at the minutiae of symptom development processes rather than gross circumstances causing illness.
“Cure” research revolves around the development of new drugs to suppress symptoms, surgical procedures to minimise symptoms caused by other treatments, or non-invasive brain manipulation to reduce dyskinesia or dystonia. All successful developmental processes, while often improving quality of life for some patients for a while, result in significant profits for the researchers and producers.
This is the most difficult challenge in creating research into RECOVERY strategies. Most will result in little to no profit for developers and less than average income for those delivering the therapies or strategies required. So there is no real incentive to undertake such research.
The small number of RECOVERY research projects undertaken to date have been privately funded by small institutions, localised companies with limited resources or individuals (like myself) with minimum income and no capital. While some excellent findings have come from this type of research, and patients have benefited from the new understanding generated, minimal funding has meant that studies are often small and limited in design. Findings are difficult to promote without the backing of large companies or organisations, so very few patients reap the benefits.
Where are the celebrities who want to RECOVER and lead a funding drive for independent research on aetiological pathways and recovery strategies? Where are the government incentives for universities, colleges and support groups to undertake this type of research and, in doing so, reduce our outrageous medical expense burden prevalent in all western nations?
Here are some ideas of excellent research projects that could/should be funded by independent bodies untied to any pharmaceutical or supplement producer or medical equipment company. I also suggest that groups directing these projects will need input and direction from Western Allopathic Medicine, Complementary/Alternative Medicine, patient representatives from neurodegenerative disease support groups, representatives who have already reversed the illness process successfully and those already involved in recovery research projects. Findings from approved research must be disseminated through public media, social media and all modalities of teaching colleges and universities.
AETIOLOGICAL PATHWAYS RESEARCH
· Life events that result in a high risk for neurodegeneration, including individual, social and generational trauma, high-stress work, and social attitudes.
· Foods that increase risk of neurodegeneration. We already have some strong evidence that certain food groups significantly increase the risk of neurodegeneration. This can/should be expanded and strengthened.
· Foods that may decrease risk of neurodegeneration. Again, we have some good evidence of food choices that protect health. More, better, deeper research can increase our knowledge.
(NB: there is a very good study underway from Bastyr University looking at many of these factors in regard to Parkinson’s disease. However, funding is very limited which limits the size and scope of the study and the intensity of involvement.)
· Beverages. There is some equivocal and, possibly biased research showing alleged protective properties from some beverages that has been widely publicised while other, stronger, research showing neuro damage caused by other frequently consumed beverages has been suppressed
· There is some evidence suggesting that beverages made from Camelia sinensis may block endogenous production of dopamine in the biopterin cycle despite granting other possible benefits. This needs to be thoroughly explored.
· Chemical exposure. We are all exposed to over 500,000 potentially neurotoxic chemicals in our normal activities; sometimes on a daily basis. We must fully identify these chemicals and publicise the results of the findings.
· The effect of chronic infections on neurological health. “Stealth” infections such as Borrelia species, Bartonella species, Mycoplasma species and other poorly-understood chronic infections are often identified in patients with neurodegenerative conditions by the few practitioners trained in this branch of health care. Extensive study is needed to help those patients who are misdiagnosed and/or mistreated.
RECOVERY STRATEGY RESEARCH
· Self-love and self-care. How can we identify needs and develop strategies to help patients love themselves without condition and gain impetus in caring for themselves?
· Meditation. How much can meditation help and do some types of meditation help more than others?
· Trauma discovery and mitigation. In my own practice, individual, social or generational trauma is a significant factor in 98% of cases diagnosed with a neurodegenerative or autoimmune disorder. We need a much wider study to fully understand the impact of various kinds of trauma and what type of strategies are most successful in the reversing the illness effects of past trauma.
· Food choices. Extrapolate from research showing what foods harm and what foods heal, construct lists of helpful foods, daily or weekly eating plans and an education program to show patients how and why food is so important?
· Beverages. An education program to show why some common beverages are so harmful and what are excellent and delicious alternatives.
· Cell hydration. What is the true impact of dedicated cell hydration strategies (using specific homeopathic formulas) when combined with lifestyle and food choices?
· Extended Bowen Therapy study. Several tiny studies have shown Bowen Therapy to be beneficial to patients diagnosed with Parkinson’s and Multiple Sclerosis. We need long-term, blinded studies with larger populations to truly understand benefits.
· Combining Western Medicine with Complementary Medicine and Self-Help strategies. What combinations work best to promote RECOVERY rather than symptom mitigation?
· Pilates delivered by a skilled instructor has been shown to alleviate many symptoms of neurodegenerative disease. A large study can develop recommendations for the best exercises to enhance progress towards RECOVERY.
· Yoga. In a small study funded by the Neuro Recovery Foundation more than 15 years ago, certain Yoga poses and programs were shown to mitigate symptoms and enhance progress towards RECOVERY. We need a much more extensive study in multiple locations to fully understand the benefits of regular Yoga.
· An intensive study of those who have already recovered from Parkinson’s, MS or similar, looking at what they did that was different from the “norm”, what helped, what didn’t, what was counterproductive and how their strategies can be applied to others.
These suggested studies are just the beginning. Are there people in our community who have the desire, connections power and excitement to create a new push towards RECOVERY research? Is there anyone among the many rich and celebrated people diagnosed with neurodegenerative disorders willing to show leadership in creating a new push to RECOVERY funding and research?
No one will make profit from the research projects I have suggest or similar research, but millions of people facing a life of misery, with current research focused on mitigating symptoms and generating profits for huge corporations, will gain the possibility of breaking out of continuous illness into a pathway to RECOVERY.
Neurodegenerative disorders amount to a real pandemic costing lives, productivity, joy and billions of dollars each year. We MUST change the focus of research if we are to turn this pandemic of illness into a pandemic of joyful robust health.
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