Gambling in online PD patients higher than previously reported

Posted May 1st, 2009 by

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, such as these slot online games, 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.

Wicks P, MacPhee G (In press) Pathological Gambling amongst Parkinson’s Disease and ALS patients in an online community (PatientsLikeMe.com), Movement Disorders


19 Comments

  1. 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!

  2. 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?

  3. 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.

  4. 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.

  5. 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.

  6. Dear SubmitShop,

    Thanks for your interest and your kind words! I’m not sure we had the statistical power or design to conclusively reject an association between dopamine agonists and gambling. We were also surprised not to see more online gambling; slot machines and lottery tickets seem to be popular though. Perhaps there’s a specific kind of uncertainty here that really excites patients’ reward mechanisms?

    The good news for non-motor symptoms is that the American Academy of Neurology just released their quality measures for the treatment of Parkinson’s disease. These include:

    ✓ Psychiatric disorders or disturbances assessment: All patients with a diagnosis of Parkinson disease who were assessed for psychiatric disorders or disturbances (e.g., psychosis, depression, anxiety disorder, apathy, or impulse control disorder) at least annually

    ✓ Cognitive impairment or dysfunction assessment: All patients with a diagnosis of Parkinson disease who were assessed for cognitive impairment or dysfunction at least annually

    ✓ Querying about symptoms of autonomic dysfunction: All patients with a diagnosis of Parkinson disease (or caregivers, as appropriate) who were queried about symptoms of autonomic dysfunction (e.g., orthostatic hypotension, constipation, urinary urgency/incontinence and fecal incontinence, urinary retention requiring catheterization, or persistent erectile failure) at least annually

    ✓ Querying about sleep disturbances: All patients with a diagnosis of Parkinson disease (or caregivers, as appropriate) who were queried about sleep disturbances at least annually

    We’re as glad as you are to see neurology taking such a keen interest in this subject, long may it continue!

    Best wishes,

    Paul Wicks

  7. 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.

  8. 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

  9. 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.

  10. 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!

  11. 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

  12. 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

  13. i was a complusive gambler. for some reason from july when i started my requip i have stopped gambling. i honestly have not had a thought about having a bet since july and i don’t understand why this is because my gambling was bad and i tired everything to stop. so could my medication have done this? or has somebody else got another reason cause i don’t understand it.

  14. Derek,

    It’s funny you say that, because I was just thinking the same thing. I use to drink a lot and gamble…but I started requip not too long ago and I really haven’t wanted to do either of those…

  15. […] just like her.  In fact, she tells a compelling story about how she also found others who were experiencing compulsive disorder as a side effect of their PD and describes feeling as if a weight had been lifted off of her […]

  16. Just stumbled on this article and all I can say is wow! So what the report is saying is that some drugs which we use to treat PD can lead to increased tendancies to gamble.. Does this just mean monetary gambling like stated above ‘wanting to play the lotto more’ or are PD patients more prone to taking more gambles in their daily life, such as crossing busy roads with less care than normal, picking up hot things and stuff like that if you know what I mean?

  17. Nice work. This is a very interesting study, and I find it particularly fascinating that dopamine agonists appear to have been found “not guilty. Gambling is probably only one outlet of compulsive behavior in Parkinson’s disease. During other studies we have found higher levels of compulsive hobbyism

  18. Excellent site you have here but I was wanting
    to know if you knew of any forums that cover the same topics
    talked about here? I’d really like to be a part of community where I can get comments from other experienced individuals that share the same interest. If you have any recommendations, please let me know. Many thanks!

  19. Thank you! Have you checked out http://www.PatientsLikeMe.com yet? There’s a great PD community there, this is just the associated blog.

    Let me know if you have any questions, I’m here to help.

    Best wishes,
    Liz Morgan, PatientsLikeMe Community Manager

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