Neurotransmitters are chemicals that act as a messenger from nerve cells, effecting the transfer of an impulse to between nerve fibres, a muscle fibre, or some other structure.  Each neurotransmitter attaches to a different receptor. For example, dopamine molecules attach to dopamine receptors.

Within the central nervous system, dopamine is produced in the substantia nigra and ventral tegmental areas in the brain, and in the gut (see below). Several neurological disorders such PD are characterized by dysregulation of the dopamine system.

Dopamine is involved in movement, coordination, and feelings of pleasure and reward. Serotonin, too, is involved in emotions, but it also affects digestion and metabolism. Abnormal functioning of serotonin in the brain is associated with mental health disorders including depression and anxiety. Both play a role in regulating mood and emotion.

50% of our dopamine is produced in the gut. The gut microbiota communicates with the brain through several different mechanisms. This includes production of neurotransmitters or modulation of host neurotransmitter metabolism, innervation via the vagus nerve, or activation of the HPA axis (hypothalamic-pituitary-adrenal axis, a neuroendocrine mechanism that mediates the effects of stressors by regulating numerous physiological processes, such as metabolism, immune responses, and the autonomic nervous system). The gut provides approximately 95% of total body serotonin, most of which exists in plasma.

Neurotransmitter modulation by the gut microbiota
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6005194/#:~:text=The%20gut%20microbiota%20has%20been,activation%20of%20the%20HPA%20axis.

Regulation of Neurotransmitters by the Gut Microbiota and Effects on Cognition in Neurological Disorders
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8234057/

Also, research by Professor Spillantini in the Department of Clinical Neurosciences at the University of Cambridge, shows that the folded protein in Lewy bodies, alpha-synuclein, that is responsible for neuronal dysfunction and death, form in the gut and travel to the brain.

So we can see why diet and gut health are major action areas for those with PD (see Section 6).

The elephant in the room is that as people with PD, something has gone wrong with our brains! So we need to do everything we can to give it the best chance of recovering (which it can do due to plasticity and the creation of new neurons from stem cells, naturally). According to brain scientist and clinician Dr. Daniel Amen, this means we should avoid:

• injury, such as contact sports
• drugs, alcohol (maybe good for the heart but bad for brains) and smoking
• high blood pressure
• a typical processed/fast food diet
• environmental toxins
• engaging with toxic thoughts

and we should:

• nurture social connections
• learn new things to stimulate the brain's neural connections
• east well, sleep well, exercise
• meditate and practice gratitude

See this TEDx video by Dr. Amen https://youtu.be/MLKj1puoWCg

The vagus nerve (there are actually two, one each side) serves as the body's superhighway, carrying information between the brain and the internal organs such as the digestive tract, and controlling the body's response in times of rest and relaxation. It can reset the fight or flight system and create a relaxation response in our body.

The two-way communication between the gut microbiome and the brain - the gut–brain axis - is involved in neuronal development, brain function, cognitive regulation, and aging.  It can transmit information in both directions. The gut microbiota can act on the nervous system to transmit signals to the brain; neurotransmitters synthesized by bacteria and enteroendocrine cells can transmit sensory signals to the brain within milliseconds through the vagus nerve.

Once again this underlines the critical nature of gut health for neurological disorders.

So apart from diet and other ways to repair the gut microflora, we can stimulate our vagus nerve to send a message to our bodies that it's time to relax and de-stress, which leads to long-term improvements in mood, pain management, wellbeing and resilience.

One of the main ways that you can stimulate the healthy function of the vagus nerve is through deep, slow belly breathing. To practice deep breathing inhale through your nose and exhale through your mouth remember to:

• Breathe slowly (aim for six breaths per minute).
• Breathe deeply, from the belly. Think about expanding your abdomen and widening your rib cage as you inhale.
• Exhale longer than you inhale. It’s the exhale that triggers the relaxation response.

Also you can try:

• Loud gargling with water or loud singing to activate our vocal cords.
• Foot massage: gentle or firm touch can assist in stimulation the vagus nerve.
• Cold water face immersion: immerse your forehead eyes and at least 2/3 of both cheeks into cold water.
• Laughter: have a good laugh , which also lifts your mood and boosts your immune system.

See https://www.physio-pedia.com/Vagus_Nerve

How we react to life events is determined both by our genetics, and also by our environment, upbringing and culture.  Our genetics is encoded in our DNA, which we inherit from our parents and which controls the way that we develop and the way our body functions.

Epigenetics is an ongoing process whereby we are continually expressing or downregulating our genes, according to messages from the brain and the environment. Every thought, interaction, smell, sight, stress etc, sends chemical messages called neuropeptides to receptors in every cell of the body. The DNA responds by making proteins, hormones or directing stem cells etc.We have, according to the latest tally about 20,000 protein encoding genes. There are as many again of non-coding genes, and a lively scientific discussion continues on numbers and functions. But only about 5,000 are in use, or turned on, while the rest lie dormant.

So what influences this selection, that might be the causes of disease or cell malfunction? We know it’s something from our environment, upbringing and culture, but determining cause and effect is highly complex, and epigenetic research is still in its infancy. It gets further complicated by the fact that these DNA influences can be intergenerational e.g. from events in the mother’s or grandmother’s life.

‘ Exposure to [such] environmental insults induces stable changes in gene expression, neural circuit function, and ultimately behavior’

Epigenetic Basis of Mental Illness
https://pubmed.ncbi.nlm.nih.gov/26450593/

Also see Role of epigenetic factors in the development of mental illness throughout life https://www.sciencedirect.com/science/article/abs/pii/S0168010214001795

Suffice to say that conditions such as PD may result from events in our history or current environment. Dr.Rediger (see his book 'Cured') says that 90% of chronic illness is caused by environmental factors.

Current research is also indicating that the presence of certain genes is associated with a higher risk of developing PD. But something turns those genes on. Practitioners such as Dr. Joe Dispenza (more on him later) feel sure that they can be turned back off.

Given the complexity of possible factors, knowing what works in this respect is almost impossible to research, but it makes sense to me to assume that it might, for example, be toxicity (we all live with exposure to thousands of toxins every day), in which case it may help to detox thoroughly (and is a good thing to do anyway). The trigger might be trauma, so if you have experienced extreme stress, it may have affected cell structure and function, and it makes sense to address this too. It might be a lingering pathogen such as Lyme’s disease, in which case get tested and get treated.

Video from the UK trauma Council: Epigenetics and mental-health: A brief guide to the research https://uktraumacouncil.org/research_practice/epigenetics-and-mental-health-a-brief-guide-to-the-research?cn-reloaded=1

Worry about our condition and its impact on our life is natural. But the worry, which is the thinking and imagining process, leads to the physical feeling that is anxiety.

Anxiety is very common; 3 million people in the UK have an anxiety disorder. Anxiety is a response to a real or perceived stress or danger. As a threat is identified by the amygdala or ‘fear centre’ in the brain, cortisol is released and adrenalin gets pumped through the body to enable it to cope with danger. The problem is that this response can get out of proportion to the reality of the threat, or can even occur when there is no danger present but just through worrying and working ourselves up..

If the anxiety gets intense, one can experience a panic attack - a rush of intense anxiety and physical symptoms. They can be frightening and happen suddenly, often for no clear reason.

Anxiety can create severe physical effects, but that a lot of it is self-generated and may not be proportionate to the reality of a situation. It also doesn’t stay severe for very long.

So here are my top tips, combining my own experience with that of the best medical advice I can find.  I’m not going to pull punches.

1. Intention – be clear that you intend to get some calm and clarity back quickly. It can be easy to allow the anxiety to take hold as if nothing can be done, or even in some way to welcome it, and play the victim (sorry if that sounds harsh, but I know it can be true).
2. Act now – we’ll look at what to do next. Just don’t roll over feel helpless. This is not a good state, for ourselves or for people around us, and we can act to control it. Don’t wait for circumstances to change or for someone else to save you – believe in your own capacity to deal with it.  At least try.
3. Avoid it occurring - that’s not helpful advice when you’re suffering anxiety, but if we’re close to the edge already, it may not take much more to push us over.  So take your self-care seriously and do what you need to do in your life to reduce the background stress level. It’s your life, and your choices.
4. Practice acceptance – this does not mean that we’re passive victims, it means being honest that this thing is here, not running away or pretending otherwise, and doing what you need to do even if you don’t feel like it (more on acceptance later).
5. When anxiety arises:
   1. Use mindful breathing practices (see later sections) – especially the longer outbreath technique with a smile and with attention on your feet. This can change the body chemistry.
   2. Use curiosity – step back and observe with interest the feelings, thoughts, and emotions that arise with a little distance. You are not your thoughts.
   3. Get outside and do some exercise – this can bring down the cortisol that triggers the adrenaline.
   4. Focus your mind and energy on something or someone else – distraction can get us out of self-obsessed thoughts.
   5. Employ kindness – for yourself and even better, for others.  Act with compassion – it makes us happier.
6. How to bring down the background level:
   1. Stay self-aware – if we regularly check in to our mental health, we can do something preventative before a crisis builds.
   2. Develop a regular mindfulness practice – it can be more effective than drugs and is recommended by the UK’s National Institute for Health and Care Excellence (NICE) – see next section.
   3. Follow a good diet and focus on the health of the gut biome. Have plenty of fruit and veg, water, and keep caffeine and sugar in control.  Some nutritional supplements may be useful (more on gut health and diet later).
   4. Consider a course of drugs (SSRIs) if the anxiety is getting really bad – much as we’d all like to avoid drugs, they have their place. They can give us a window of opportunity to get back to health.

Hoping that helps!

Please see a doctor if you need to. This is only a set of tips and I’m not medically trained.

Depression is a mental health problem that involves having a low mood or losing interest and enjoyment in things. It can also cause a range of other changes to how you feel or behave.

The American Psychiatric Association describes the following symptoms:

• Feeling sad or having a depressed mood
• Loss of interest or pleasure in activities once enjoyed
• Changes in appetite — weight loss or gain unrelated to dieting
• Trouble sleeping or sleeping too much
• Loss of energy or increased fatigue
• Increase in purposeless physical activity (e.g., inability to sit still, pacing, handwringing) or slowed movements or speech (these actions must be severe enough to be observable by others)
• Feeling worthless or guilty
• Difficulty thinking, concentrating or making decisions
• Thoughts of death or suicide

https://www.psychiatry.org/patients-families/depression/what-is-depression

We all have times when our mood is low, and we feel sad or fed up. Often these feelings happen for a reason and pass on their own.

But it might be depression if the feelings become so bad that they interfere with our daily life. Or if they last for several weeks or months.

See the MIND website: https://www.mind.org.uk/information-support/types-of-mental-health-problems/depression/about-depression/

I really enjoyed the book ‘The Upward Spiral’ by Alex Korb. He describes the typical downward spiral of depression, which feeds off its own impacts, that interfere with your brain’s electrical and chemical activity, creating a stable state. This can lead to demotivation and apathy, or a feeling of inevitable decline (which is not true!).

Korb argues that we have the potential to kick start a process of recovery, that also feeds off itself leading to an upward spiral of good mental health. See this video interview with him:

Many of the tips in the anxiety section apply to addressing depression, but here are some others that work for me when I get down (and some of the key suggestions by Dr Korb):

• Act as if you are not depressed! Do things that you know are good for you, like meditation and exercise, and stick to your daily routine, even if you don’t feel like it (never go back to bed)
• Get outside into nature and widen your perspective and awareness, and make it a sensual experience
• Talk with a friend who you know is a good listener, and ideally who has a positive outlook (we need to put aside the stigma of mental illness)
• Do some aerobic exercise that you enjoy, such as fast walking in the park or dancing (and maybe join a class or group to keep you on track)
• Set goals, develop a realistic plan, take action, and reward to yourself on making steps to achieving them (which also boosts dopamine)
• Improve your sleep hygiene (see later notes)
• Be proactively positive (see notes later)
• Tidy up and clean the house
• Practice gratitude (see notes later)
• Help someone else

Please see a doctor if you need to. This is only a set of tips and I’m not medically trained.

Research has found that loneliness and social isolation may be as bad for your health as obesity or smoking 15 cigarettes a day and significantly impacts mental health.

Loneliness is associated with higher rates of heart disease, obesity, depression, anxiety, and dementia.
https://doi.org/10.1177/1745691614568352 

Chronic illness makes it more difficult to get out, interact, or feel confident. Relationships change. Having to constantly manage your condition, cope with consistent pain, having speech problems, and deal with other symptoms, can make it difficult to socialise as you once did.

There can also be the fear of what other people’s perceptions are of your symptoms. How we view our illness is itself affected negatively by loneliness; the higher the loneliness level, the more negatively the illness is perceived; negative illness perception affects mental health and the ability to cope.
https://www.psychologytoday.com/gb/blog/chronically-me/202202/the-link-between-chronic-illness-and-loneliness

A survey by Dr. Mischley of over 1500 people with Parkinson's showed that: ‘Of all the variables in the study, loneliness was the single strongest predictor of PD progression. Friendships, not tremor, predicted one's quality of life.  Not all therapies come in the form of a pill or procedure. Reach out to your community, ask for help, and be of service to others.’
https://livinghealthywithparkinsons.com

So what should you do about it?

• Talk with a friend who you know is a good listener, and ideally who has a positive outlook (we need to put aside the stigma of mental illness)
• Share your story with other people in the same dilemma, and join a group, ideally in person but using social media too; you will support them too
• Put aside your worries about what other people think of you, be proud and offer your wisdom and compassion to others
• Get a pet; they positively affect mental health and even longevity
• Get out of the house, into nature and local cultural events (check beforehand if they have access arrangements if your movement is limited, you might get a prime seat!)
• Make the extra effort to get out of the loneliness spiral (see tips on depression which overlap with this)

Also see an article on the Parkinson’s UK website:
https://www.parkinsons.org.uk/information-and-support/your-magazine/spotlight/loneliness-and-parkinsons

A placebo is any treatment that has no active properties, such as a sugar pill. The placebo effect is when a person’s physical or mental health improves after taking a placebo or ‘dummy’ treatment. In drug trials, half the trial patients are given a placebo in a double blind test; if the drug is no better than the placebo it may well be considered ineffective.

There are many clinical trials where a person who has taken the placebo instead of the active treatment has reported an improvement in symptoms; so why is this?

The term placebo in medical circles is often denigrated to mean not a real treatment. Yet there are many cases where it can be argued that the placebo is just as, or more effective than administering the drug (see ‘You are the Placebo’ for case studies). It seems that what you believe or have faith in, alters your outcome, so placebo is powerful medicine!

"The placebo effect is more than positive thinking — believing a treatment or procedure will work. It's about creating a stronger connection between the brain and body and how they work together," says Professor Ted Kaptchuk of Harvard-affiliated Beth Israel Deaconess Medical Center.

The person's attitude is critical –“ if the person expects the treatment to work, the chances of a placebo effect are higher, but placebos can still work even if the person is sceptical of success” says Victoria Government Better Health Channel.

A ‘nocebo’ effect is the reverse, where we can experience a negative outcome because we are expecting it. This expectation of negative effects may be triggered when a patient is told the adverse effects they might experience.

In this sense, when we are told by our neurologist to expect degeneration with PD, we may be more likely to experience it, or for progression to be faster. It may be true that as rule progression is expected, yet there are people who progress very slowly, or those who reverse some symptoms.  So when a neurologist tells us the worst, it could be argued that they are triggering the just-as-real nocebo effect.

In their books and videos, both Joe Dispenza and Dravid Hamilton give weight to the power of placebo and how to harness it. Very briefly, they suggest that by visualising wellness, as if it had already happened, and savouring the emotions that go with this (eg relief, joy, love), the brain starts behaving as if the desired outcome was real, and healing is triggered.

In one study, doctors gave Parkinson’s patients a neutral saline injection, telling them it contained a dopamine-enhancing drug. Patients experienced a reduction in symptoms, and scans showed that more dopamine was actually being produced. The body was creating dopamine because it believed it could. Patients then act as if they are recovering, which further enhances the subconscious belief system.

So positive thinking is part of healing, and visualisation is a powerful way to develop this phenomena.

Resources/exercises:

Dr. Joe Dispenza ‘You are the Placebo’

Dr David Hamilton ‘How your mind can heal your body’

Here is a Visualisation audio track (we suggest you come back to this after learning to  meditate in Section 2)

See more detailed notes on The Placebo Effect

Whilst most people will experience disease progression, it's not always the case! The body has an incredible capacity for self-healing, given the right conditions. The brain has the capacity to build new neurons and connections, known as plasticity.

I was inspired by a great book: ‘Cured’ by Dr Jeff Rediger, a psychiatrist at Harvard, who researched why some people with terminal illness go into complete remission. Normally written off as anomalies, he tried to find the common threads. To cut to the chase, all those he studied had made big changes in their life, taking their health into their own hands, with a positive mental attitude. He also refers to the ‘four pillars’ of healing: the immune system, nutrition, stress response, and identity. We need to change our relationship with ourselves and with the world. Get these things right and miracles can happen.

See a TEDx video of Dr. Rediger https://youtu.be/8mjVHIB0FhI

So never give up; here are some stories of people who have made amazing recoveries.

John Coleman is an Australian naturopath, who was at Stage 4 PD, and is now symptom-free through a menu of natural health interventions. His book ‘Rethinking Parkinson’s Disease’ sets out his approach.  He says the top intervention is to have a positive attitude to health, and then support the body in recovering by itself through lifestyle changes, supplements, spiritual and meditative exercise, fun etc. I have been consulting with him.
See this video interview with John:

https://www.returntostillness.com.au/index.html
Useful podcast interview https://player.fm/series/parkinsons-recovery/tension-and-trauma-releasing-exercise-tre

Bianca Mollé was a teacher with advanced stage PD, who discovered the gentle power of Qi Gong and energy rebalancing. She has made a complete recovery. I have taken coaching with her. She has written two books, eg ‘Reboot and Rejoice’. See our interview:

She also shares her story of healing with Qi Gong here:
https://www.youtube.com/watch?v=z2YxnLhV0oo

Howard Shifke was a highly stressed lawyer who developed advanced PD quickly. He was determined to recover, drug-free, and developed a series of medical Chi Gong and related exercises, a change of diet, and a positive and accepting mindset. His full recovery took about 10 months. He now coaches people, sells a book with more detail, but his full ‘recipe’ is free to download. When I spoke with him in 2020 he said 6 others using his method had made a full recovery and 400 others are reversing symptoms. See this video interview with him:

https://www.fightingparkinsonsdrugfree.com

John Pepper was at an advanced stage also, but taught himself, or retrained this brain, to recover full movement based on the capacity for the brain to regenerate itself. His brain health strategy is based around fast walking and conscious movement. He has written a book ‘Reverse Parkinson's Disease’
See his story: https://www.theguardian.com/science/2015/feb/08/man-walks-off-parkinsons-symptoms-norman-doidge-extract-brain-heals-body

There is a case study about him in the book 'The Brain's Way of Healing' by Norman Doidge.

Anne Hellevik pushed back against the negativity of her diagnosis, with a strong mental attitude that she could recover, using visualisation, meditation, yoga, walking and healing trauma, to recover to a point where symptoms are almost gone.

She was the subject of a recent research paper whose findings support her near asymptomatic status, here: Anne Hellevik's story

See her story on video:

Trish Misczuk is a  another person I am in contact with who is recovering and has recently posted on this. See her approach here: Trish Misczuk's story

Christian Hageseth starting getting symptoms 18 years ago. He did not find the levodopa drugs useful, so relied on exercise, yoga, ECT, B1 and a positive mental attitude, and is in very good health today. He talks about his journey, including dealing with severe depression. He runs a website www.makemostofpd.com and runs a new project to help relationships, such with carers at www.the-kindness-dialogue.com

Colin Potter used a combination of a ketogenic diet, supplementation, detoxification and exercise to put off medication and reduce the symptoms he was experiencing. He is doing well after 15 years, and feels that by acting early, it is possible to manage PD and live well without drugs and, therefore, avoid side effects. Emotional processing is a critical element in his approach.

See a recent interview:

The Parkinson’s Recovery Project is a non-profit organization dedicated to disseminating information about the cause and treatment of Parkinson’s disease. This project was led by Janice Hadlock, an acupuncturist, who herself recovered from Parkinson’s.  She found that in most PD patients the stomach meridian runs backwards, and that many are stuck on ‘pause’, a state that people normally only enter when faced with a near-death situation, typified by closure of many body systems. These two factors create the symptoms of PD. Onset can be through injury or trauma, or self-induced disassociation. She worked with many patients,  and found that when the pause-mode type currents are turned off, Parkinson’s disease ceases. Several rather dense books are available for free download.
https://pdrecovery.org