INTRODUCTION: HOW THE UNDERSTANDING OF PARKINSON’S DISEASE IS CHANGING
Current scientific research is revealing more and more, and at an ever increasing pace, that the view of Parkinson’s Disease as just a neurodegenative issue [due to the “death of dopamine producing cells causing movement disorders”] is no longer a valid or sustainable perspective. Instead, we now know that “Parkinson’s Disease” is a whole-system syndrome [or collection of syndromes], as much “body up” as it is “brain down”. Rather than being classed as neurological, it is becoming clearer that PD, is in fact, an inflammatory disease. Inflammation due to auto-immune, allergenic, toxicological [chemical], pathogenic [virus, bacteria, microbe] sources have all now been found to be strongly associated with the different forms of PD. Gut and digestive tract issues, vagus nerve damage, physical injury, emotional trauma and sustained stress, genetics, and nutritional deficits have all been shown to be the major precusors which may lead to increased susceptibility.
The evidence for the above also no longer resides just with the academics and medical doctors, but, through the power of social networks such as Facebook, is increasingly in the hands of the people directly affected, who are coming together to share their stories and experiences, take surveys amongst themselves, collaboratively perform the scientific research reviews and translations, and create best practice for disease management. In essence, just as Parkinson’s and its proper treatment can no longer be claimed by the speciality of Neuorology, so too the advanced, holistic and modern understanding of what it means to have PD can no longer be claimed by specialist academics alone.
In this article, we explore how “Parkinson’s Disease” is really a much more complex issue than just a neurodegenerative or movement disorder, via the perspective of three independent researchers, all of whom have been personally affected by the disease, and also through an exemplar collaborative sharing of experience from an online forum of people with PD.
NUTRIGENOMICS AND CAUSES OF PARKINSON’S DISEASE
by David Spry, person with Parkinson’s and administrator of Parkinson’s Disease Fighters United
This is slightly tweaked version of an article I published back in October 2015.
I have spent a lot of my time researching Parkinson’s disease over the last few years. In my mind I have stitched all the threads together into a coherent picture. Over a year ago, I flew to the USA to a research conference on alpha synuclein in PD. This did not change my overall picture.
There are some people, like Muhammad Ali, for whom the cause is trauma or vascular PD: physical damage to the brain [by it being knocked about or through restricted blood supply]. Then there are others for whom the cause is toxic exposure, including from recreational drugs. Both of these types of causal effects seem to give rise to a rapid onset form of Parkinson’s disease, but which doesn’t progress very quickly, and in which mood problems don’t seem to be such an issue. We see peole with this class of PD simply getting on with their lives quite admirably despite Parkinson’s Disease [Michael J. Fox may be another example].
Then there are others who have Parkinson’s in their very genes, where the disease runs in the family. Different groups of genetic pre-dispositions to PD of this class have already been identified.
For the rest of us (I estimate up to 85% of those diagnosed), we are given the diagnosis of Idiopathic Parkinson’s Disease. “Idiopathic” simply means cause unknown – the doctors tell us we have it and are happy to leave it at that! It is in this group of people with PD in which there are typically many other illnesses and symptoms arising, not directly associated with the classic movement disorder PD symptoms of tremor, stiffness and dystonia.
I have been researching the question of how many of us also have a disease like fibromyalgia or rheumatoid arthritis on top of PD. Do you suffer from the following additional symptoms of “Ideopathic” PD?
Skin issues (dermatitis)
and so forth (see David Ponsonby’s and the Parkinson’s Disease Fighters United’s compiled lists below).
I now know from surveying many people through social media, that such complicating factors pervade this form of Parkinson’s. These symptoms are not logically connected directly to “movement disorder” nor to “dopamine producing cell death in the brain”, and so do point to something deeper and more systemic. Yet they are still recognised as common symptoms of “Parkinson’s Disease” even when considered as a purely neurological issue.
So I got myself genetically tested at 23andme and I found the root cause of my own “Idiopathy”. Not a Parkinson’s gene, but a common enough gene that combined, with stress, can and does cause metabolic shortfalls. Effectively, my nerves and brain were/are starving to death through gene orchestrated malnutrition.
The problem genes are concerned with Methylation (MTHFR and other genetics) and I believe that maybe up to 50% of cases of Idiopathic Parkinson’s Disease are also actually caused by these.
Do you suffer annoying, and seemingly unpredictable, variability day-to-day with your symptoms? If so, I believe this is due to your food intake, because when I don’t eat right, the next day my symptoms are double, and sometimes my meds just don’t work. Understaning and fixing nutrition has therefore been the bedrock for me in stabilising and greatly improving my life. Unfortunately, when I mention the importance of food to people with Parkinson’s Disease, I still see looks on faces which tell me that they would rather die than change the diet to a tailored superfood-based one.
Yet, I now know that if I had taken a targeted vitamin pill in the early days, this could have stopped my disease in its tracks. If this post is ringing a bell with you, I thoroughly recommend you get your genes tested at 23andme too. When you’ve done that don’t stop! Download your data and upload it to Genetic Genie. I then recommend following Dr. Terry Wahls as a starting point for creating your own Parkinson’s food protocol tailored to you.
I hope this helps one of two people, especially in the early stages for whom, learning from my own experience, this may help them prevent any further decline!
A LIST OF NON-MOTOR SYMPTOMS ASSOCIATED WITH PARKINSON’S DISEASE
by David Ponsonby, who has scoured the world for a cure, after his father was diagnosed with Parkinson’s Disease in the 1990s
The “establishment” tends to think mainly in terms of the other primary diseases which have been associated with Parkinson’s, e.g. diabetes, cancer, thyroidisms, etc. However, I gathered a list of “secondary” factors which kept cropping up in PD forums. Often, the formal connection with PD only came later – constipation only seems to have been formally recoginized in the late ’90s, for example. So here are some issues that may become apparent or worsen with PD onset or, in many cases, are associated with the meds used to treat PD.
Blepharitis (See under Seborrhea)
Constipation [see also Gastrointestinal Concerns]
Death see under Mortality
Dental care xerostomia (dry mouth)
Dysphagia / Dysphonia
Emergency (See also Falls & Hip Fractures i.e. Orthopaedic Approaches)
Falls (See also hip fractures)
Constipation / Drooling/ Dysphagia /
Gastroparesis / Irritable Bowel Syndrome / Peptic ulcer
Hyposmia (See Smell)
Olfaction (See Smell)
Hyperhidrosis (Excessive sweating)
Psychosis (see Cognitive Disturbances: Hallucinations)
Seborrheic Dermatitis (Blepharitis)
Speech (see Voice)
Swallowing (see Dysphagia)
Vascular disease (hyperhomocysteinemia)
Voice (Speech see also Swallowing / Dysphagia)!
PARKINSON’S DISEASE OR NOT PARKINSON’S DISEASE? THAT IS THE QUESTION!
by Dr Gary Sharpe, Out-Thinking Parkinson’s and contributor to Parkinson’s People
I was recently laid very low by eating half an aubergine [eggplant]. In particular, the l-dopa PD medication did not work at all the next day and the rigidity and pain in my shoulders returned at a level which I haven’t felt in a long time. David Spry pointed out to me that eggplant is one of the nightshade family, which some people, especially if neuro or immuno compromised, can be very sensitive to.
So I read this “Dr Axe” article about nightshade foods, and, lo and behold, most of the foods listed are ones I’d already found, by trial and error, that I have allergenic responses to, some of them very badly. I had never made the association between these seemingly quite different fruit and vegetables for myself, which include potatoes and tomatoes [especially if green], gooseberries, chilli peppers and even so called superfoods like goji berries! The commonality, it seems, is that they all contain a class of chemicals called alkaloids, which some people can be highly intolerant to. Furthermore, the article describes the way they affect me very well too – symptoms which I (and my healthcare providers) have always just ascribed to my PD before:
“…look out for any warning signs after eating nightshades, such as joint pain, digestive issues, reddening of your skin or any type of inflammatory response.”
Of particular note, the article mentions “…nightshade steroidal alkaloids can irritate the gastrointestinal system and act as acetylcholinesterase inhibitors – affecting neurotransmitters” – which provides a very direct and significant link between this form of allergic response and the worsening of underlying Parkinson’s Disease.
I believe the Dr Axe article is worth a read by everyone, because it illustrates once more what many of us having been saying for some time: that what we may think of as our PD symptoms are, in fact, not directly so. Instead they are due to allergic reactions, auto-immune or inflammatory responses, but made physically or mentally more manifest through a vicious circle with PD. I am not suggesting that all people with PD have this particular allergy (indeed, Glen Pettibone suggests that eggplant can actually be significantly beneficial in the treatment of PD, for those not allergic) but I am strongly suggesting that people with PD are likely to be suffering from complicating inflammatory factors, like in this, my own example.
To underline that such allergic responses are not just psychosomatic or “all in the mind” of people with Parkinson’s, I have included as the cover image of this post (above) a photographic record of the sores which concurrently appeared at the top of my leg with the eggplant incident. Such red patches appearing on my skin, including dermatisis on my face, and also dandruff, is how I have learned to distinguish PD per se from inflammation. This allows me to indentify and detoxify from my inflammatory factors, such as eggplant.
I therefore urge all people with PD and their caregivers to give very serious consideration to beginning their ownvprocess of “identification & detoxification”, since finding and eliminating your own inflammation factors can and does mean the difference between a life with ever worsening chronic pain and living with a manageable condition.
WHAT WE’VE LOST
by the Parkinson’s Disease Fighters United
Here is an exemplar case study of how improved understanding of Parkinson’s Disease can be achieved through the collaborative sharing of experience by those directly affected. We asked the PDFU forum members what they had noticed they lost or what stopped since their PD started. Here is what we came up with (so far!):
Ability to Concentrate
Sense of Smell/Taste
Appetite/Appreciation for Food
Sense of Thirst
Irritable Bowel Syndrome
Bodily Temperature Control
Sense of Balance
Appreciation for Music
Interest in Life/Things
Feeling the Cold
Sense of Purpose in Life
Sense of Touch in Fingertips and Toes (Altered or Painful)
Quick Emotional Release Through Crying
Ability to Form and Sustain Relationships
Ability to Sustain Happiness
Interest in Reading
Interest in Sex