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When Symptoms, Perception, and Data Align
But the fact remains that my symptoms had worsened. I could feel it, others could sense it, and the data reflected it. It’s ultimately how you feel that matters – you manage the disease, not the numbers – but when feelings, perceptions, and data converge, it is very likely that your feelings tally with the objective truth. So whilst I certainly wasn’t happy with my deterioration, I was pleased to know about it and the form it took. After all, knowledge is power… but only if it is acted upon.
Why I Track My Parkinson’s Symptoms
As those of us in the monitoring and evaluation field like to say, “what gets measured gets managed.” So as soon as I was reasonably certain I had Parkinson’s, I looked for meaningful and convenient ways of tracking my symptoms in order to manage them as well as possible.
What Is the PRO-PD Score?
The PRO-PD symptom tracker (Patient Reported Outcomes in Parkinson’s Disease), developed by Dr Laurie Mischley, fitted the bill. For nearly three years, I have been frequently monitoring my Parkinson’s symptoms using the PRO-PD tracker. It is a self-rating system consisting of 30 common PD symptoms. The score for each symptom ranges from 0 (symptom not present) to 100 (severe). Individual scores are tallied to produce a total score that ranges from 0 to 3000. Parkinson’s-related quality of life is rated as Excellent if you have a total score of less than 500, Good if between 500 and 1000, Fair if between 1000 and 1500, and Poor if above 1500.
A Sudden Jump in My PRO-PD Score – Should I Be Alarmed?
On 16 November, my score was 355, an increase of 70 points from my previous score on 12 July. 70 points is quite a jump, especially considering that the typical score increases at a rate of about 38 points per year. So why the lack of panic? Several reasons – Parkinson’s does not necessarily progress steadily, the scores are somewhat subjective, I might have made data entry errors, and last but not least, the data, whether good or bad, can engender important insights.
Rather than a straight line, the progression of Parkinson’s resembles a sawtooth, as shown in the graph of my scores. There have been equivalent upward and downward jumps before. So it is par for the course. Encouragingly, when you plot a best-fit line through the data points, the overall trend remains positive.
John's PRO-PD scores from May 2023 - Nov 2025
Digging Deeper – Which Symptoms Actually Worsened?
However, I was still curious about the reasons for the increase, so I interrogated each symptom. Of the 13 symptoms that scored above zero, none had improved, and five had worsened. Three of these were related to movement, one to speech, and another to urinary symptoms.
The next step in the process was trying to find reasons for the individual symptom changes. Slowness and Walking were both affected by a long-standing left shin injury, which flared up following my flirtation with belly dancing (not a pretty sight)! I loved the coordination benefits, but those repeated ankle twists did me no good. The score for Dressing, Eating and Grooming was interesting because my previous score had been zero. That was quite an anomaly, as I have scored something on all previous assessments, I cannot recall dressing, eating and grooming with ease for a very long time. So I think that score of zero on 12 July was an error. Data entry errors happen – we are all human. My speech had declined because I was doing a lot of public speaking, so a vicious circle had set in. Urinary Symptoms mirrored the issue with Dressing, Eating and Grooming. So I think, if you factor in my July 12 carelessness, my score had only risen by 30 points. That 30-point increase is accounted for by general slowness, reduced walking quality, and worsening speech quality. This certainly aligns with my feelings and others' perceptions, so I trust these numbers.
Turning Insight into Action
So what to do? I systematically reflected upon my various “Outpacing Parkinson’s” practices. In most cases, I didn’t feel I could make any meaningful changes. However, there was some room for manoeuvre in my speech exercises. I doubled down on my SPEAK OUT! home practice sessions, doing a daily session rather than five days per week, and I have been more consistent with my daily singalong practices. I also added more dance moves to my exercise practice while still minimising manoeuvres that stressed my shin. I added a daily assisted headstand, and I have increased my level of intent when running up and down stairs. The quality of my movement has certainly improved as a result.
The Role of Diet and Ketosis in My Parkinson’s Management
But possibly the most significant change I’ve made is returning to a ketogenic diet. I hadn’t deliberately wavered from keto, but it had been a long time since I tested my blood glucose and ketone levels. In light of my November PRO-PD scores, I decided to monitor glucose and ketone levels more closely and found that they were mostly in the “low level of ketosis” range. This prompted a search for high-carbohydrate sources in my diet. And the culprit turned out to be yoghurt. Pretty obvious in hindsight, but it is easy to lower one’s guard over time. Cutting out yoghurt made a huge difference, and for the past month, I have been consistently in high therapeutic levels of ketosis.
The Results – Managing Symptoms, Not Numbers
This is all very well, but we are managing symptoms, not numbers. So what are the symptoms telling me now? The voice has improved, my movements are faster, and my dexterity is better. And the numbers? On 16 December 2025, my PRO-PD score was 315, down 40 points from the previous month.
What gets measured gets managed!
Mischley, L.K., Lau, R.C. and Weiss, N.S. (2017) ‘Use of a self-rating scale of the nature and severity of symptoms in Parkinson’s Disease (PRO-PD): Correlation with quality of life and existing scales of disease severity’, npj Parkinson’s Disease, 3(1), pp. 1–7. Available at: https://doi.org/10.1038/s41531-017-0021-5.
Norwitz, N.G., Hu, M.T. and Clarke, K. (2019) ‘The Mechanisms by Which the Ketone Body D-β-Hydroxybutyrate May Improve the Multiple Cellular Pathologies of Parkinson’s Disease’, Frontiers in Nutrition, 6, p. 63. Available at: https://doi.org/10.3389/fnut.2019.00063.
Please note
The information provided in this article is for information and educational purposes only and is not intended as medical advice. Always consult a qualified healthcare professional before making any changes to your health regimen or if you have any concerns regarding your health. Individual results may vary, and the author does not assume any liability for the information presented.
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- 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
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)
Practices that I’ve parked for now
- High-dose B1 supplementation
- Lithium supplementation
- Ginkgo supplementation
- BeechBand
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
- Vibration plate
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.
Our night-shifted world. Most people on the planet no longer live under natural light regimes. This has profound health consequences. From Lorenz 2022 (https://djlorenz.github.io/astronomy/lp2022/).
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.
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The Diagnosis
In this article, I explain how PD affects me, why there is reason for optimism, and some of the things I do to “Outpace Parkinson’s.”
How PD affects me
PD symptoms are diverse, with a highly individualised mix of slowness, tremors, stiffness, and other symptoms. As you can see from the radar chart (Symptoms by Domain), I score high in certain metrics and low in others.
Can’t Read my Poker Face
Chart summarising my Parkinson’s symptoms (0-100 scale)
The Prognosis - PD can be progressive
Some of the things I do to “Outpace Parkinson’s”
Changes in PD patient quality of life since diagnosis
My progress chart
Medications
Exercise
One of my most important exercises is ongoing speech therapy, initially provided by an excellent speech and language therapist who has been trained in the clinically proven SPEAK OUT! Technique as provided by the Parkinson Voice Project (PVP). The technique demands daily practice, which is facilitated by PVP’s daily YouTube speech exercise videos.
Diet and supplements
Managing toxic load
Consumption of canned fruits and vegetables has been associated with faster PD progression. Bisphenol A (BPA), a known endocrine disruptor, is widely used in the inner coating of food cans, while aluminum is an established neurotoxin. Toxic metal tests revealed that I had high levels of aluminium in my system. I have also been exposed to large quantities of pesticides, notably when working in the Philippines to help farmers step off the pesticide treadmill. There is nothing I can do to change these past exposures, but I can minimise toxic load going forward.
Other avenues I’m exploring, to manage toxins of all kinds, include mind-body healing, increased social support, speech therapy and breath support.
Parkinson’s as a [heavily] disguised gift
Iceland: one from the Bucket List
References
Doidge, N., 2007. The brain that changes itself: Stories of personal triumph from the frontiers of brain science. Penguin.
Doidge, N., 2015. The brain’s way of healing: stories of remarkable recoveries and discoveries. Penguin UK.
Mic the Vegan, 2018. 5 Ways a Vegan Diet Can Help Parkinson’s Disease. Available from: https://www.youtube.com/watch?v=bSxdNJk-ej0
Mischley, L. K., 2023. Parkinson’s disease "What do successful people do to slow down PD progression?”, 2021. Available from: https://www.youtube.com/watch?v=LdpfNnnAzKI.
Mischley, L. K. et al., 2023. Parkinson Symptom Severity and Use of Nutraceuticals. Nutrients, 15 (4), 802.
Mischley, L. K., Lau, R. C. and Bennett, R. D., 2017. Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression. Oxidative Medicine and Cellular Longevity, 2017.
Mischley, L. K., Lau, R. C. and Weiss, N. S., 2017. Use of a self-rating scale of the nature and severity of symptoms in Parkinson’s Disease (PRO-PD): Correlation with quality of life and existing scales of disease severity. npj Parkinson’s Disease, 3 (1), 1–7.
Mischley, L. and Rountree, R., 2019. Preventing and Slowing the Progression of Parkinson’s: A Clinical Conversation with Laurie Mischley, ND, MPH, PhD, and Robert Rountree, MD. Alternative and Complementary Therapies, 25 (2), 59–67.
Müller-Nedebock, A. C. et al., 2023. Different pieces of the same puzzle: a multifaceted perspective on the complex biological basis of Parkinson’s disease. npj Parkinson’s Disease, 9 (1), 1–11.
Python, M. The Life of Brian, 1979. HandMade Films.
Sharma, P. and Mittal, P., 2024. Paraquat (herbicide) as a cause of Parkinson’s Disease. Parkinsonism & Related Disorders, 119.