Given my optimistic disposition, you probably already know the answer to the question – A RESOUNDING NO.
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.
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
There is no doubt that the ratings are somewhat subjective, and at that time, I was working on several quite intensive assignments. This meant a lot of travel, multitasking, and an inevitable decrease in downtime. All this is likely to have some impact on Parkinson’s symptoms.
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!
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!
References
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.
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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