- Published on
- Learn about approaches that people have done to outpace Parkinson’s via scientific and popular literature, social media, word-of-mouth, etc.
- Learn about the putative mechanism of action of the approach, which helps establish credibility in my eyes.
- Adopt the practice.
- Observe any changes in PD symptoms in the ensuing weeks and months.
- Depending upon the results, keep, park or adapt the approach.
My decision-making process for the adoption of new lifestyle practices to outpace Parkinson’s
In this blog, I introduce the current top ten lifestyle changes I believe are helping me to outpace Parkinson’s. The list is in no particular order as ranking the practices implies spurious precision. I also list certain practices that I’ve parked for now, as well as others that I still practice, which I cannot say have made a tangible impact. Next, I list some practices that I may explore in the future.
It is important to note that this blog only provides an account of things that I do, and it should not be considered medical advice. That is the domain of your healthcare providers.
Lifestyle changes I have implemented that appear to have a tangible impact on my PD symptoms
- Dopamine replacement therapy
- Ozone therapy
- Exercise
- Osteopathy/massage
- Ketogenic diet and fasting
- Speech therapy (SPEAK OUT! Therapy)
- Restoring circadian rhythms
- Meditation
- Tapping
- Magnesium supplementation
Lifestyle changes that I continue to implement, but for which I’ve not noticed any tangible impact on my PD symptoms
- Cold therapy
- Sauna therapy
- Drinking hydrogen water
- Vitamin D lamp (UVB)
I’ve maintained these practices due to their widely documented overall health benefits and negligible recurring costs.
Practices that I’ve parked for now
- High-dose B1 supplementation
- Lithium supplementation
- Ginkgo supplementation
- BeechBand
I’ve parked these practices because they’ve shown no clear benefits to me and incur tangible recurring costs in terms of time, money or inconvenience.
Practices that I may explore in the future
- Therapeutic use of psychedelics
- Red light/near-infrared light therapy
- Low-dose naltrexone
- Neurolinguistic programming (NLP)
- Hyperbaric oxygen therapy (HBOT)
- Facial yoga
- Medical marijuana
- Spooky 2 rife machine
- Biomagnetic Pair Therapy
- Brown’s Gas (aka HHO or HydrOxy)
- Nicotine patches, pouches or gum
- Vibration plate
I am still in the learning/research phase, with time and cost implications in some instances.
Dopamine replacement therapy
Dopamine replacement therapy (DRT), as the name suggests, supplements natural dopamine, which is in short supply in PwPs. Initially, I did not observe any beneficial effects, but a few weeks into my treatment, I noticed that my tremors appeared to ease. I did not feel any other symptom relief. However, at various times, I have inadvertently or deliberately reduced the dose, and I have found that tremor and neuropathy symptoms do increase, although the effect is somewhat delayed. Dopamine replacement therapy does not delay Parkinson’s progression, but it helps to provide a window of opportunity during which you can practice lifestyle interventions that go beyond symptom relief. Despite its imperfections, I’m very grateful for DRT. Levodopa/carbidopa is a safe and effective treatment option for Parkinson’s. In stark contrast, despite enormous research investment, there is no equivalent for Alzheimer’s disease.
Exercise
But while motivation is not a limitation in my case, I do have an issue that constrains the amount and intensity of my exercise. I have a congenital heart issue, hypertrophic cardiomyopathy (HCM), which never gave me any problems in my youth, but now limits my ability to do very strenuous workouts. So, things like high-intensity interval training, which I used to thrive on, are now beyond me.
My exercise regime, however, is very consistent, consisting of regular morning dog walks, weight training, cycling, swimming, Qigong, dancing, and play-fighting (also with our dog). I notice an increase in sluggishness and rigidity if I miss a day or two of exercise.
Ozone therapy
I invested in a home ozone setup in May 2024 and almost immediately felt the positive impacts. Among the symptomatic benefits I noticed were diminished anxiety levels, reduced neuropathy and increased flexibility. Setting up the equipment takes some time and expense, but ozone generation is straightforward once the setup is in place, and the running costs are minimal. The mainstay of my ozone therapy is ozonated water, which I drink every day. I also have a small portable infrared sauna into which I discharge ozone gas. I find the sessions to be very invigorating, but I cannot say they are any more effective than drinking the ozone water.
My home ozone setup
Osteopathy/massage
My fortnightly osteopathy and massage sessions help to alleviate aches and pains, mobilise my limbs, which have become far less fluid since PD raised its ugly head, and correct my posture, which would otherwise become more stooped and asymmetric over time. This is more than a cosmetic issue, as these changes reduce our ability to undertake simple day-to-day tasks, increase our vulnerability to falls, and impact our self-confidence.
Additionally, osteopathy and massage are likely to enhance the benefits of other lifestyle practices. One of the tenets of osteopathy is the ‘rule of the artery is supreme.’ In other words, improving blood flow by moving things around and stretching tight muscles that impede local capillary flow enables nutrients to reach the cells more effectively. Therefore, one could envisage that all the other beneficial effects of practices such as magnesium supplementation and ozone therapy are enhanced by the manual therapeutic benefits to blood flow.
I am lucky to have access to the services of Esther Barton and Braam van der Walt of Wrington Vale Osteopaths, who are outstanding practitioners and wonderful people. I cannot recommend them highly enough.
Ketogenic diet and fasting
In a nutshell, it is thought that people with Parkinson’s do not process glucose efficiently but can become more metabolically healthy by using ketones as fuel. A state of nutritional ketosis can be induced by a high-fat, moderate-protein, low-carbohydrate diet and fasting. Since adopting this practice only about three months ago, I have found much greater levels of mental clarity and an amelioration of numerous PD symptoms. It is early days, but it appears that the ketogenic approach, coupled with intermittent and prolonged fasting, is also alleviating my hypertrophic cardiomyopathy symptoms. I sincerely believe that I will maintain a predominantly ketogenic diet for the rest of my life.
Speech therapy (SPEAK OUT!)
SPEAK OUT! Therapy is based around a daily home practice which consists of several exercises which help people with Parkinson’s and related conditions retain and regain their speech and swallowing. The exercises make use of the fact that you can consciously activate your intentional motor system, which is less dependent on dopamine, to override the dopamine-based automatic motor system. Thus, activities such as speech, which are automatic for most people, can be made intentional through consistent, purposeful practice. The importance of the intentional system to PwPs and its role in retaining and regaining speech and swallowing is beautifully explained in the 25-minute video What is Parkinson’s? Which I recommend to everybody with a skin in the Parkinson’s game.
It is important to work with a certified SPEAK OUT! Therapist, both for an initial evaluation and periodic refresher sessions. I have been working with Louise Lim of Recommunicate Speech who provides excellent support.
The 'Circle of Intent' summarises the SPEAK OUT! approach to regaining and maintaining speech and swallowing in people with Parkinson’s and related disorders
Meditation
Tapping
Restoring circadian rhythms
Thomas Edison’s first commercial incandescent light bulb was invented in 1879, launching a change unprecedented in planetary history, the health effects of which are only recently being elaborated. Re-establishing natural circadian rhythms can be challenging, but it can be hacked in various ways, such as using apps that reduce blue light, wearing blue-blocking glasses, taking regular breaks outside to bask in natural light, walking barefoot on the ground, and using circadian-friendly nightlights.
Unlike many people with Parkinson’s, I sleep very well at night, which is something I do not take for granted. However, for as long as I can remember, I have suffered a massive post-lunch dip in energy. This post-prandial tiredness became a thing of the past once I adopted a suite of circadian rhythm hacks. I do still indulge in the occasional afternoon nap, but it is now more of an optional extra rather than a near necessity.
For a detailed account of the health impacts of unnatural light regimes and how to mitigate these impacts, check out my recently published Big Book of EMFs: Everything You Need to Know about Electro-smog to Optimise Your Health without Living in a Cave.
Magnesium supplementation
Magnesium is a common deficiency in people with Parkinson’s and indeed the population as a whole. Magnesium is essential in many physiological processes, including sleep and the maintenance of circadian rhythms, as well as the regulation of our autonomic nervous system, thereby impacting stress levels. Additionally, a vicious circle appears to exist, with increased stress heightening magnesium loss, thereby exacerbating the initial magnesium deficiency.
The most obvious benefit of magnesium to me is its ability to mitigate restless leg syndrome at night. I take a daily dose of 1000 mg 6 in 1 magnesium (providing 300 mg of elemental magnesium) and magnesium glycinate (providing 200 mg of elemental magnesium) every day. I virtually never get restless legs, except if I forget to take supplemental magnesium. The twitching and discomfort are cues to take the magnesium, and within half an hour, things return to normal. I cannot speak to its effect on anxiety levels, but I would not be surprised if it is helping in that regard as well.
Putting it all together
Another subjective but useful indicator of symptomatic change is the Patient-Reported Outcomes in Parkinson’s (PRO-PD) score, a self-reporting scale that assesses the nature and severity of Parkinson’s disease symptoms. It combines the scores of 35 symptoms of PD to give a rating of up to 3,500 (0-100 for each symptom). I test myself periodically. At diagnosis, I had a score of 468. At the time of writing, my score was 285.
My Parkinson’s symptom progress as measured by my PRO-PD Scores
I will post some more detailed, referenced descriptions of each of these interventions in the coming weeks. In the meantime, I would love feedback from people with Parkinson’s on the positive impacts of your favourite lifestyle intervention(s). I’m very keen to learn from the community.
- Published on
So that we can sort the wheat from the chaff
Circular and repetitious trains of thought or jumping to confusions
I think therefore I have a thought: We are not slaves to our thoughts
We observe our thoughts and let go of them much of the time because it is impossible to translate everything we think every day into feelings… there simply isn’t enough time. What I am proposing here is that we consciously cultivate our innate ability to observe our thoughts so that it becomes a habit that we can draw upon as and when we need it; thus enabling us to effectively decide which thoughts are useful to us and which ones can be discarded.
Decoupling your trains of thought – breaking the link between a thought and a feeling
Ali describes this form of meditation “for people who suck at enlightenment!” as the single most powerful exercise he has done to improve his life… That statement certainly made me sit up and listen as it comes from a man who has a deep understanding of a rich smorgasbord of life-changing techniques. Below is a summary of this simple but very powerful exercise.
- First find a reasonably quiet place.
- Set a timer for five, ten or fifteen minutes.
- Close your eyes if it is safe to do so.
- Allow a thought to come to you as it surely will. Acknowledge it as a thought about a thing. For example, oh there’s a thought about washing the dishes, do not attach any meaning to this thought – there is nothing you can do about the situation at this time.
- Let this thought go, and another thought will come to mind.
- Acknowledge this thought as a thought about a thing and let it go.
- Keep with this process until your time is up.
When you first start doing this you will probably find that the thoughts come thick and fast. Ali Campbell likens it to a dam bursting and unleashing a torrent of thoughts. But over time you will find that the thoughts flow more slowly, as if you are sitting by a river bank observing the thoughts gently flowing by.
Once you have ingrained this practice into a habit you will know at the deepest level that you are not your thoughts. It is now clear that you are the observer of your thoughts. It is as if your thoughts are the trains that leave a busy station all night and all day. You are now free to decide which trains to take and when and where to take them. You no longer have to jump from train to train but are free to go where you want to go because you have the choice.
Reference
- Published on
Control, Alt, Delete for your Bodymind
Rebooting your system
Another way, which I will discuss here, is to remember to breathe! Of course all of you reading this blog have been successfully breathing for your entire lives so this advice may seem a little pointless. Of course I don’t mean breathing in just any old fashion; what I am referring to is conscious slow and deep breathing... a skill that most of us do not cultivate. Witnessing your breath provides a wonderful pattern interrupt so that you can step out of the drama and emerge with a new sense of clarity.
There are various breathing techniques that we can use for this emotional reboot. The simple practice I will describe here is based on the work of meditation teacher extraordinaire Davidji. He calls it Sixteen Seconds to Bliss. If 'Bliss' sounds a little New Age to you then feel free to call it Sixteen Seconds to Clarity. It is like a mini meditation for those who think that they cannot meditate or simply feel that they don’t have the time. Even those who do meditate every day can benefit from this short time-out when life’s day to day struggles appear to be overwhelming.
Sixteen Seconds to Bliss
All you need to do is follow these simple steps.
- Close your eyes if it is safe to do so.
- Now try to think a stressful thought which I am sure is not too difficult for most of you.
- Then relax your tongue and rest it on the floor of your mouth. According to psychotherapist, integrative health-care specialist and author Dawson Church relaxing your tongue tells the body that you are safe so there is no reason to go into survival mode. I for one have been unable to hold on to stressful thoughts when my tongue is relaxed in this way.
- 0-4 seconds: Breathe in slowly and deeply through your nose and from your belly to the count of four, placing your awareness on your breath as the air enters through your nostrils and slowly fills your lungs. Breathing through your nose enables you to breathe deeper than if you gulp air through your mouth.
- 5-8 seconds: Hold your breath to the count of four while remembering to keep your tongue loose and on the floor of your mouth.
- 9-12 seconds: Slowly and gently breathe out from you belly and through your nose to the count of four, continuing to observe your breath as it is released upwards and outwards.
- 13-16 seconds: Hold your breath to the count of four, all the while keeping your tongue relaxed.
- Return to regular breathing
I doubt that you were able to maintain the stressful thought.
In only sixteen seconds you can reduce your blood pressure, slow your pulse rate, suppresses stress hormones, elevate your growth and sex hormone levels, and bolster your immune system; and when practised regularly the effects last considerably beyond those sixteen seconds. Once it becomes a habit you can use this simple tool inconspicuously during most stressful situations, enabling you to step back from chaos and into a resourceful state. Of course it will not always be safe or convenient to close your eyes but the open-eyed version is also very effective. This technique can be used during a toilet break to great effect but for us guys I don’t recommend it while standing in front of the urinals!