At the doctor’s office, in the ER, in the hospital, how many times are you asked about your drug allergies? A lot! And, as a common practice when in the hospital, you’ll even get a red bracelet or something to indicate such. There are strict rules around allergies; from techs to transport to MDs, hospital staff are well-trained to look for these bracelets and to make sure that you don’t receive anything that you are allergic to. But did you know that, as a person with Parkinson’s disease (PD), you have a drug “allergy”? That medication is haloperidol (commonly known by its trade name, Haldol).

Yes, you may never have heard of this medication, but it is a drug widely used in emergency rooms, on hospital units, and in nursing homes to help calm people down when they are agitated or when they are experiencing delirium. These are not uncommon problems, especially for people who are advanced in age, experiencing certain medical problems like urinary tract infections, or have been in the hospital for multiple days. And those of us with Parkinson’s disease tend to be older, with the average age of onset being age 60. We also tend to be hospitalized fairly often for things unrelated to our PD, and during those hospitalizations, we can experience significant problems like delirium or urinary tract infections. But giving us Haldol can lead to cascading negative consequences, including a higher likelihood of death. What is this drug? Here’s a brief bit about why it is so bad for people with PD.

Haldol and other medications like it are considered major tranquilizers, or first-generation antipsychotics. Haldol is used for psychotic symptoms found in disorders like schizophrenia, as well as for delusions, delirium, or agitation. Other medications in this class include Stelazine, Thorazine, and Prolixin. All of these medications use a similar mechanism of action: they block D2 receptors in the brain. This means, in lay terms, that these drugs all reduce dopamine levels in the brain. Reduce dopamine, you may say. Why, that is the opposite of what a Parkinson’s person needs! All the other medications for Parkinson’s are trying to increase dopamine. Yes. So this medication, if given to a person with Parkinson’s, can lead to a severe increase in symptoms that can mean losing the ability to walk and talk. And that is why I, as a person with Parkinson’s, decided to list Haldol as a medication on my allergy list.

I am not actually “allergic” in the traditional sense to this medication. It doesn’t give me a rash or make my throat close; I don’t experience anything like anaphylaxis. But it is listed as a contraindicated medication for people with Parkinson’s disease. What does “contraindicated” mean? More specifically, it indicates that the particular treatment or drug is potentially harmful to that particular person, either because of other medications they are taking or because of the disease they have. Sort of like giving a giant chocolate bar to someone with diabetes. Unfortunately, in the current medical system in the United States, there is no systematic way or specific place to list contraindicated drugs (of which there are others for Parkinson’s) that is similar to the “allergy” alert. So, I have been testing out having Haldol listed as an allergy for me in my medical record to see if it is helpful.

So far, this has sparked several conversations with medical staff when I am asked what my reaction to the medication is, like any allergy, as the question comes up whenever my allergy list is reviewed. I answer that I have Parkinson’s and that Haldol reduces dopamine. It is a chance to also educate nurses and other medical staff about this contraindication for people with Parkinson’s. So, next time you or your loved one with Parkinson’s visits their primary care provider or neurologist, ask about having Haldol listed as a medication to which you are allergic. Or, even better, add it to your own electronic medical record, if that is doable for you. Don’t let your disease take charge of you, take charge of your disease! These were words spoken to me upon my diagnosis, and I pass them along to you. Until the medical system catches up with safety measures to protect us as people with PD, we need to “hack” the system in positive ways that keep us safe.

Rebecca Miller is a clinical psychologist.