When most people think of Parkinson’s disease (PD), they think of a shuffling gait, a shaky hand, and slowness of movement. As awareness has increased of the non-movement symptoms of PD, such as hallucinations and depression, we’ve seen the psychological consequences the disease can have too. More recently, studies in the scientific literature have been reporting on cases of excessive gambling in patients with PD, sometimes associated with the use of dopamine-agonist drugs such as pramipexole (brand name: Mirapex).
In the Parkinson’s disease community on PatientsLikeMe, we came across several accounts from distressed members who had suddenly acquired a significant gambling problem. One member wrote:
“I am spending a lot of money that i should not spend. I wake up thinking about the lottery, I daily purchase lottery tickets, scratch offs, and often wish that I could get on the bus to go to the casinos… Help me before I spend all of our little savings.”
We set out to investigate further, setting up a research collaboration with Dr. Graeme MacPhee of the Parkinsons Disease Non-Motor Group (PDNMG) and Southern General Hospital (Glasgow, Scotland), who has carried out studies in this area in the past. Although previous studies had associated problem gambling with dopamine-agonist drugs, we wanted to find out if gambling might be elevated in other patients with a neurodegenerative movement disorder; maybe gambling was just an outlet for boredom or something that someone with physical disabilities could take pleasure in as a hobby. Therefore, we used a control group from our ALS community. Because users of our site are, by definition, web users, we were also interested to see if our users were more likely to be using online gambling websites than other reports in the literature. Finally, we wanted to know more about what was driving patients’ gambling behavior.
Because of the size and levels of engagement in our patient communities, we were able to receive responses from more than 400 patients in about a week. Normally, a study of this size would take several years and a team of researchers to carry out, showing the potential power of sharing and openness.
What did we find?
- We found a higher level of problem gambling in our PD population (as defined by the South Oaks Gambling Scale) than previous studies; 13% of PD patients as opposed to previous estimates of around 4%.
- Patients with ALS were much less likely to gamble; only 3% of ALS patients scored above cutoff for having a gambling problem, compared to estimated rates of 0.25-1.7% in the general population.
- The average “problem gambler” with PD had spent nearly $3,000 on gambling in the past 12 months, and an estimated $24,000 in their lifetime.
- The most common forms of gambling behavior were the lottery, slot machines, or visiting a casino. Gambling online using the internet was uncommon; only 2% of PD patients reported ever having gambled online, and just 2 out of 27 problem gamblers with PD.
- PD patient with problem gambling were more likely than ALS patients with problem gambling to say that their gambling was distressing or out of their control.
- In our study, problem gamblers with PD were no more likely than non-gamblers to be on a dopamine-agonist drug.
We were interested to find that our study produced a higher estimate of problem gambling in PD than previous studies. It could be that our population is biased or unusual in some way; we have a slightly higher proportion of young-onset PD patients, who may be more prone to gambling. We also suspect that people are more willing to admit to distressing or embarrassing behavior issues in an anonymous online survey as opposed to discussing it in the doctor’s office.
As more of these cases have come to light, warnings about compulsive behavior have appeared on the label of dopamine-agonist drugs such as Mirapex. It is the responsibility of everyone involved in the care of people with PD to warn them of the risks. The more patients like those in our community share their real-world experiences of treatments and side effects, the more researchers, drug-makers, doctors, and other providers can learn to help minimize the risks and maximize their quality of life.