It wasn’t all that long ago that the general consensus in the medical community seemed to be that you could manage many of the symptoms of Parkinson’s disease (PD) for an improved quality of life, but you couldn’t do much to affect the progression (the rate of worsening) of the disease. In the last 10 years or so, roughly the time period that I have known that I have PD, this point of view has changed dramatically.
Anyone following the mainstream news on PD will probably have come across a magazine article, a radio bite, a TV feature or a conference talk on how people are fighting back against PD with various kinds of activity, usually involving a certain amount of vigorous exercise that gets the heart-rate up.
Initially the benefits were based on observations that may not have been very rigorous however more and more scientific data is appearing and the general consensus has now shifted towards exercise being neuroprotective by which they mean those dying dopamine-producing cells in your brain aren’t dying as fast as they used to. Effectively, the exercise is slowing the progression of PD.
In 2016 I attended the International Parkinson’s Congress in Portland and discovered the research of Laurie Mischley and Richard Lau. More recently, I heard Laurie speak at a regional conference in Victoria hosted by the Parkinson Society of British Columbia. Finally I had found some scientific research that I could understand and that convinced me that I can have more control over the progression of my PD.
The reason for my interest is associated with the graphic shown below.
It is a very busy graphic however the key to its understanding is contained in the bottom left corner as shown in the next graphic.
Without going into too much detail, the horizontal axis indicates the years since PD diagnosis while the vertical axis is a measure of Patient-Reported Outcome (PRO-PD) which corresponds roughly with quality of life. Lower PRO-PD scores are better — higher scores are worse.
The data were obtained from lifestyle and PD severity surveys of more than 1000 participants.
What stands out is how the data are scattered meaning that the disease can progress at very different rates in different people. In the two extremes there are some patients undergoing very rapid progression (points in the top-left corner) or very slow progression (points in the bottom-right corner).
The question that the researcher’s asked was whether or not the position of the points was random or somehow correlated with different aspects of a subject’s lifestyle. If it were random for each individual then they would have no control the progression of the disease (they would still be able to manage symptoms with medication). If the position of the point were affected by aspects of an individual’s lifestyle then changes to lifestyle might affect the progression of the disease.
What the researchers found was that many lifestyle choices did correlate with slower or faster disease progression. In the Results section of the main graphic there are a number of tables with rows representing different lifestyle factors. Green rows are good rows associated with slower disease progression. The associated “green” values are negative and are a measure of how much lower the PRO-PD score might be with or without the lifestyle factor. Values associated with faster progression are shown in red and have positive values associated with higher PRO-PD values.
Consider one example, that of someone who exercises 7 days per week. From the exercise table in the upper right corner, you can see a “green” value of -409.8 which is almost the width of the excellent, good or fair ranges of PRO-PD. That’s huge!
I believe that these values refer to the affect of one lifestyle aspect at a time and probably cannot be added when considering the effects of multiple aspects. However they should be indicative of the relative importance of various lifestyle factors.
I’ll let you mull over the green and red rows in the graphic. I would like to repeat what is written at the very bottom of the Conclusions section (emphasis is mine):
This pragmatic natural history study offers the first evidence base for prescribing lifestyle modification (beyond exercise) to patients with PD. Patients should be empowered to know that they can make choices that affect outcomes.
In other words, I have significant control over the progression of my PD. There are still times when frustration, resignation or despair start to creep in but they are much fewer than before and easier to beat back.
If you know someone who’s letting PD get the better of them, let them know that they can take some control back resulting in a better quality of life. You might also let them know that our slo-pitch softball league, which has at least two Parkies playing in it already, is looking for more players.