Gambling in online PD patients higher than previously reported
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.
I simply speechless for the moment! What happened to the mission to find an effective treatment or cure? To divert precious resources from a valid medical mission onto a social problem is irresponsible. STAY ON MISSION! Find an effective treatment or a cure and the “gambling problem” will go away. WAKE UP!
Comment by John Roberts — May 2, 2009 @ 9:35 am
Good work-I was not a part of your study but am interested in following further studies of the broader topic-compulsive behavior. My caretaker/spouse has a theory that there could be a genetic connection. While not a “compulsive” gambler by the study definition, I spend a considerable amount of time but no money playing Texas Holdem Poker, Hearts and on line slots (for tokens). Possble correlation?
Comment by BoB Cummings — May 2, 2009 @ 11:13 am
John, thanks for dropping by. I’m sorry you don’t think this research project is important; it was motivated by our desire to help patients with Parkinson’s whose lives have been severely damaged by pathological gambling caused either by their disease or by drugs they’ve been prescribed. Like anyone, we are of course passionate about trying to find a cure for Parkinson’s disease (and the other life-changing illnesses we deal with) but it’s still early days for research carried out in online communities. “Social research” studies like this give us the chance to compare our findings with the scientific literature, at a fraction of the speed it would normally take. This allows us to know more about the characteristics of our users and tests our ability to draw conclusions from our data. We have plans for bigger things but must always start somewhere!
Bob, thanks for your kind words. Gambling is probably only one outlet of compulsive behaviour in Parkinson’s disease. During other studies we have found higher levels of compulsive hobbyism (computer games, puzzles, reading, knitting, etc.) and I believe these are related to the changes we see in the dopamine system in PD. Dopamine is a neurotransmitter responsible for a number of brain functions, not just movement as we often think! It is involved in the brain’s reward mechanism, the part of the brain that “lights up” every time you win a hand of cards, get your paycheck, or sink the perfect putt! The combination of this system degenerating, combined with large pulses of dopamine coming in from drugs taken to treat Parkinson’s means that it’s likely some people will notice changes in behaviour. Where this leads to playing online games for tokens, it is relatively harmless; but particularly for people with a past history of gambling, it can lead to the type of results we saw in our research.
Comment by Paul Wicks — May 2, 2009 @ 1:23 pm
Although I don’t call myself a professional gambler, I play poker (live) three times a week and play online multiple times a week. Most players at the games sit down with $300 on the table. I’ve played and studied the game for over 40 years….and am a constant winner. I don’t think I have a gambling problem. I don’t gamble on anything else. I participated in this survey and I hope my answers weren’t counted as having a problem.
Comment by citytom — May 6, 2009 @ 3:26 pm
Nice work. This is a very interesting study, and I find it particularly fascinating that dopamine agonists appear to have been found “not guilty” (at least in this one courtroom :-)) I’m also surprised that the people who do have problems with gambling don’t tend to gamble on line. I know that we are all web users by definition here, so that’s an eye-opener.
I think this type of research may turn out to be very helpful. Too long have the “non-motor” symptoms of PD been ignored. For some patients, the non-motor symptoms are worse than the primary PD symptoms! Keep at it; this is a good starting place.
Comment by Marian Bumala — May 6, 2009 @ 5:32 pm
Oh my! This describes me perfectly. I am currently taking Mirapex and Sinement. I would go to the casino everyday if I could. My husband has said he will never take me or go with me again. I paly Texas Holdem on line everyday. I’m not satisfied with free sites, I must play for money. So far it’s about $25.00 a week. At the casino, last year I lost about $3,200. Call me stupid.. I can’t help it.
Comment by Janet B — May 6, 2009 @ 5:33 pm
Paul, I was reading this and must say good work…I am so glad that my compulsion was not gambling, but I am not compulsion free. My traveling passion for people has become a compulsion almost uncontrollable..I have spent untold amounts of money in the past year traveling to strange places to meet unknown friends. I’m am sure that three years ago this idea would have never entered my thought process. My family fought me tooth and nail and finally at the Unity Walk this year they saw what I now do best….I went from grandmother of five and goat farmer to someone who will talk to anyone about Parkinson’s and it’s caregivers and patients. I seem to have absolutely no fears and always believe the money will come from somewhere and it does. I’ve won scholarships, traveled to meetings, went to Congress, Walked the Unity Walk and chaired my own Symposium on Parkinson’s: took care of three blogs and a mother with Alzheimer’s. I have just taken a one week sabbatical and am ready to go again…go figure….love pokie
Comment by pokie too — May 7, 2009 @ 9:23 pm
I live in Las Vegas and gambling has never been a problem and was not when I was on Mirapex. I only go to a casino to have a meal once in a while. Although I am not on Mirapex anymore (Requip XL) I still spend much more time on my hobby (sewing) than before the meds. While I don’t feel as compulsive on the Requip, it is not as effective as Mirapex in terms of the flexibility i have.
Comment by Deborah — May 8, 2009 @ 12:12 am
CityTom, thanks for your comments. We’re not making a judgement about whether a particular level of gambling is right or wrong; but the scale we used only marks people as a gambler who have certain behaviours such as chasing losses, gambling more than they intended to, needing to take out loans, or having to cover up their gambling behaviour from others. I too am partial to the odd hand of Texas Hold ‘Em!
Marian; on this occasion the agonist drugs didn’t appear to be culprits but it’s worth pointing out that it wasn’t the intention of the study to answer that question so it wasn’t statistically powered to do so. However we are considering a followup study!
Janet it sounds like you might want to discuss these issues with your healthcare professional at the next available opportunity.
Pokie, I think almost anything can become a compulsive behaviour, we are creatures of habit after all!
Deborah, like others I think we should increasingly recognize that when we think of compulsion in PD, gambling is the clearest manifestation but not the only potential source of a problem.
Thanks everyone for your interest and comments!
Comment by Paul Wicks — May 11, 2009 @ 11:49 am
My father was diagnosed in 2000 at the age of 48. He recently died. This followed 18 months of obsessive behaviour leading to a serious crime. His behaviour was so out of character. I want to no if it was his requip.
Please contact if can help. I need to find some help with this so I can start grieving for my dad whom i loved so much
kirsty
Comment by kirsty barber — May 22, 2009 @ 7:56 am
Dear Kirsty,
I am sorry to hear of your father’s struggles and his recent passing. I’m afraid I can’t offer any specific advice or interpretation of your father’s situation but as other people in this discussion have said, their changes in behaviour were not simply limited to gambling. Lying to family members and even stealing have been reported among patients with severe pathological gambling, so a link to criminal activity is not unthinkable. Sorry not to be able to offer more specific commentary.
Paul
Comment by Paul Wicks — May 27, 2009 @ 1:34 pm