This text is a continuation of the post Call for research on DM1.
As someone living with myotonic dystrophy type 1 (DM1), the adult onset (classic) version, is it important for me to engage in regular physical activity. This may slower the process of muscle decay and strengthen my heart which may thereby extend my life span. The average age of death for individuals with the adult onset version is somewhere between 50-60 years and the cause of death is typically respiratory failure (e.g. pneumonia) or cardiac causes (e.g. arrhythmia; Die-Smulders et al, 1998; Groh et al, 2011; Mathieu et al, 1999). Sudden death is common (Groh et al, 2008; Groh et al, 2011).
As I was diagnosed at age 16 I have had quite some time to engage in activities and behaviors that could possibly extend my life. Indeed have I several times during my life being told this by friends and acquaintances: “Oh, at least you have a good reason to really get started with physical exercise!”
As psychologists do we really know how powerful intrinsic motivation can be in changing people’s habits, and there are arguably few intrinsic reasons stronger than avoiding irreparable muscle loss and sudden death. Extrinsic motivation (i.e. external rewards of some kind) can be helpful in the beginning to get the person started with a change of habit, but in the end, it is said, intrinsic motivation is what will make you keep that good habit and that is why intrinsic motivation is expected to be your better friend in the long-term.
However, psychological research has suggested that individuals with DM1 tend to lack awareness of how severely the disorder affects them (so called anosognosia; Baldanzi et al, 2016) and we tend to be more or less apathetic in many regards, including extremely tired (e.g. Rubinsztein et al, 1998).
Personally have I only quite recently started to learn about the disorder, extremely unwillingly, and only to review the research methods used in studies behind certain claims. I still to this day suddenly lose all cognitive and physical energy whenever I think about how crucial it is for me to engage in physical activities: I get immensely tired and can’t do anything else but lie down and sleep or watch Netflix. This happens even during physical activity if stricken by the thought of how important it is: in the midst of swimming laps can my legs and arms suddenly lose all strength. The fact that the expected life time for individuals with the adult version of DM1 is severely reduced has absolutely nothing to do with myself and I am quite shocked every time I read it. My previous post on DM1 was the first time ever that I wrote anything at all about the disorder, and during my research for writing up the present post was I (yes, again…) shocked about the fact that I’m not really expected to live more than another 10-20 years. This is most certainly not in line with the plans I have for my life, and – to be honest – I have no plans on changing my plans. (Although I am quite sure that the information actually will stick this time; writing things down with own words is indeed a good method to increase recall.)
I have struggled for at least 20 years to get started with physical activity. And I have continuously failed. Not only because of the thoughts of DM1, but also due to issues with social anxiety which makes me unwilling to at all engage in physical exercise in the presence of most other people. Last year did I decide to confront these issues from a more scientific perspective by organising thoughts, feelings and possible solutions on a sheet of paper. This is how I came to the conclusion that I should completely abandon intrinsic motivation and instead focus solely on extrinsic solutions: What external rewards would make me engage in physical activity? I came up with two promising rewards: (1) money, and (2) co-authorship on related scientific publications.
I am very grateful to a dear friend who allowed me the possibility last year to test the hypothesis that monetary rewards would make me engage in physical activity. I was paid about 0.5 EUR for every lap I swam (approx. 12 m), the same amount for every 2 times I jogged up a stairway consisting of 19 steps, and about 1 EUR for every 10 minutes of walk I completed.1 Important for me was that the reward was paid in bitcoin (but defined in euro).
The intervention continued during approximately 6-8 weeks and was so successful that we had to start looking at how to make it more difficult for me to get the reward since the money otherwise would end too quickly. Indeed did the money run out and this was the sole reason why the intervention had to stop. Being paid in money for every type of physical activity I engaged in made me increase the level of activity from merely walking to and from my motor-vehicle on a daily basis to do 20-35 laps of swimming about 2-5 times a week, taking a number of 10-20 minutes walk every week, and by the time we realised that the money was about to run out I was just on my way to sign up for weekly yoga and pilates sessions. It remains unknown whether I actually would have started the yoga and pilates sessions, but I personally do believe that I would have. However, the money ran out and with that all my (subjectively experienced) motivation to engage in physical activity. I went back to the default level of activity immediately once I was no longer paid for it in money (this is indeed an established shortcoming of working with extrensic motivation).
I did find other initiatives based on the same principle of paying people to do physical exercise, for example several apps. However, these initiatives seem to be so successful that they quickly have to close the community for new members to not run out of money: people seem to be very willing to keep their promises to exercise if they are paid in money for doing it.
I do want to have a long life. I do want to be here for my daughter and watch her become an adult and start her own family. I do want to engage in behaviors that increase the chances of me having a normal or at least a less shortened life span. I do however need something to drag me out of my apathy. A purely monetary2 reward did that. I believe this is an intervention that should be tested in a series of scientifically rigid highly powered experiments including patients who fail to engage in regular physical exercise despite the fact that their lives could be significantly improved by it. It would also be very interesting to see calculations of how large the monetary rewards could be while still lowering the society’s costs associated with the disorders.
Are you aware of already published research on if/how extrinsic motivation can be used to change habits in clinical populations? Please let me know in the comments below.
Interested in leading or funding such research or initiatives and want to discuss it with me? Awesome, don’t be shy to reach out. Interested in having me leading such a project? Well that’s an exceptionally bad idea (please see again the paragraphs on apathy).
1 I have unfortunately lost track of the document where the payment was specified and it is therefore here reported from memory and should thus be seen as rough approximates.
2 No damn vouchers, cinema tickets or course credits.