A Day in the Life of a Nurse with Dystonia

A Day in the Life of a Nurse with Dystonia

You might ask how a wannabe artist/photographer ended up working nights surrounded by medical equipment and really sick people. I blame it on my father. Of course, he’s not here to defend himself anymore, but take my word for it, there was no way that he was going to let any of his three daughters become starving artists.

So, now I’m a semi-starving nurse. When I started (not all that long ago…in dog years), my salary was $8.65 an hour. I do earn a bit more these days, but Bernie Madoff never solicited me for investment opportunities. What’s rather interesting is that we seem to pay more for interior decorators than we do for the people we depend on to save our lives.

I put aside artistic dreams for the reality of mastering the science and art of critical care nursing. There was this side of me that was fascinated by some of the “big” questions in medical care, such as: “What do you do when all the body’s organs start failing?” and “How do you help those people who are truly suffering without resorting to Jack Kevorkian measures?” Solving analytical problems humanely seemed far more rewarding than photographing magnificent images (although I still find tremendous pleasure stealing away and capturing the world through a viewfinder).

Oddly enough, my professional journey through medicine intersected with a personal medical condition—one that would remain undiagnosed and untreated for five years. Some doctors said that my facial tics (e.g., hemifacial spasms) and strange pains were due to stress or some hysterical “woman’s disease.” Yes, we’re talking this century.

Eventually, I picked the right door—it happened to be at Mount Sinai in New York City—and walked out with a few names and treatments for a disease that affected my head but was not “in my head.”

I started my nursing career with dysphonia, cervical dystonia, and even generalized dystonia. Early treatments might have been much more fun if they were given for cosmetic reasons, but the Botox, Myobloc, and eventually Deep Brain Stimulation (DBS) were prescribed to ease some of the less than glamorous symptoms.

Now, how much trust would you put in a nurse who twitched and twisted? Not much. So, at first, I worked in a soft cervical collar that allowed me to perform sensory tricks that convinced me that my body was aligned and not twitching and twisting.

Well, that didn’t last too long. I thought I was doing a terrific acting job, but as patients began asking me, “What’s wrong with you? Are you in pain? Should I call a doctor, a nurse?” I knew the gig was up. Since retirement at 30 was not exactly an option, I figured out a way to continue doing what I loved despite the pain and the drugs and the brain surgery. Has it been worth it? Yes. Am I an effective nurse? Ask my patients. Do I wish I could wake up and discover this has only been a long, bad dream? You bet. However, until a magic wand appears, you can find me at an intensive care unit doing what I love despite my physical limitations.

How do I manage? I’ve got the system semi-figured out. No one wants to work nights and weekends. I do. It’s not easier or quieter or better paying; it just makes me that much more

What’s it like to work from 7:00 at night to at least 7:30 in the morning? First, you should know that when you start at 7:00 p.m., you have to be at the hospital way before then. And, if you live in New York City (NYC) and happen to have dystonia, like I do, you should probably start out the day before. Find me a day without gridlock in NYC, and I’ll bet it’s either a national disaster or a holiday weekend.

Within the first half hour, we have the changing of the guard. The night team leader makes assignments and reports are exchanged. Let me take you with me as my shift begins.

A Typical Shift

7:30 pm: I have two patients, one who is on a ventilator and will probably be bleeding all night since a drug she has been taking for migraines, Methotrexate, has eliminated more than her headaches—it has eliminated the ability of her blood to clot. Oh, and her mouth is filled with packing material. My other patient weighs about 300 pounds, has pneumonia, and is in the second stage of lung cancer. How in the world am I going to turn her over? I should tell you that despite my height, I weigh slightly more than 100 pounds. I also have wires in my neck (no, you can’t see them) that connect a pacemaker to my brain. These wires are not industrial grade—they can snap. This would not be a good thing for me or my patient. I will deal with this issue later. I have work to do.

7:45 pm: I review the computerized order checklists to make sure what medications are due at 10:00 p.m.

7:50 pm: A family member asks for coffee. This is not a big deal except that walking with a steady, even gait is not my strong suit. With a rather interesting weave, I deliver hot coffee. No spills, no burns, no thanks.

8:30 pm: I stop in to see patient #1. The oral packing is bloody. The bed is bloody. It’s time to call the Ear, Nose, and Throat (ENT) residents. Her platelet count is only seven. Luckily, she is sedated, and her vital signs are holding steady.

8:50 pm: I see patient #2 and hear gurgling sounds. She is not gargling. You do not have to be a medical whiz to know that this is not a good noise. Should you have a medical background, you might recognize the sound as a signal that there’s water in the lungs. I call it a “wet” sound, and since this patient has also refrained from urinating for most of the day, I’m betting that she will be much, much happier if I suction her. I do. She is—and I even hear a faint, “Thank you.” I like this lady (but please, don’t fall on the floor).

9:00 pm: The ENT residents have ordered platelets for patient #1. Does that mean that I get them ASAP? No. That means I now have to call the blood bank and grovel. “I need them in a hurry.” Translation to their reply of “Yeah, yeah” (and in a Jamaican accent it sounds like “Ya-di-dah”): “You’ll get them when I get to you on my list of things-to-do, people-to-see, and dinner-toorder.” Am I happy? No. Is this stressful? Yes. Does this make my straight hair curl and my dystonia symptoms go away? Take a guess.

9:30 pm: I have got to work on my begging and pleading skills. They do not teach this in nursing school. The platelets have yet to be delivered, and no one has even called from the blood bank to say, “Come and get them,” or even more unlikely, “We’re on our way.” So, I call them again. Were they (a) delayed or (b) forgotten? My hunch is that the order was still sitting on the “to-do” pile.

10:00 pm: My 300-pound patient needs to be turned over for a skin assessment. This is not good. Before getting a chance to figure out this physics problem, I add two bags of antibiotics to her IV. As I’m doing this, it occurs to me that I’ve been on duty for a while, but I haven’t had a chance to enter anything about my patients into the computer. I’ll do it now. No, I won’t. Alarm bells go off. My other patient’s blood pressure is dropping. This is when all the years of training and experience pay off. I react automatically.

10:10 pm: I run into the drug room, and if you’ve ever seen someone with dystonia run, it is not going to rate an Olympic-scored 10 for style points. I grab a bag of premixed intravenous Levophed, a medication that’s administered to raise blood pressure—something I surely do not need. My heart is pumping away like I might actually have to break the sound barrier. I dash back to my patient’s room, hook it up, and remain by the bedside for the next half-hour.

10:45 pm: The bells are ringing, and they are all for me. Has anyone done a study on how many things a single person can do at the same time? I need to clone myself (and this time without dystonia, please). Okay, who gets priority: the bedpan seeker or the hungry patient? No contest.

11:00 pm: A knight in shining scrubs appears: Stu. He helps me turn my 300-pound patient. That’s the good news. Why is there always bad news? Suddenly, her oxygen level is doing that downward slide. Please, don’t make her need to be intubated or put on a ventilator. I call the resident on duty and ask for a C X-ray order. I hope she is not retaining fluid. I am retaining stress. This does not bode well for my next activity: writing status reports.

11:20 pm: I start off with a bang, but my hands have a mind of their own. I think “write.” They think “I’m cramping up, honey.” They win. Writing will come later.

11:42 pm: Half a miracle: C X-ray done. Patient’s blood pressure has stabilized. The blood bank remains a “no show,” and I really have to eat something and/or go to the bathroom. Can you get scrubs from NASA? Those spacesuits could work.

11:55 pm: I make an executive decision: I’m going to the blood bank for my patient’s platelets. If we needed them before, we really need them now. This isn’t an order for pizza.

12:10 am: Speaking of pizza, I’m still hungry, but if I don’t sit down for five minutes I may fall over. ICU nurse hits the floor. Patients and coworkers not impressed. Okay, now that I’m sitting, I look up at the clock and realize now would be a good time to start all the chart work. For most nurses, this would be slightly more relaxing than the dramas taking place at the bedside, but with dystonia it’s not quite so easy. In fact, it’s more than just a “pain in the neck,” it causes hand cramping and pain. So, I’ve learned to master the art of two-fingered typing. No speed records will be broken tonight.

12:15 am: The formerly illusive platelets are now finding a new home in patient #1’s bloodstream. However, patient #2 doesn’t look good and her breathing is labored. I think she needs more than suctioning, so an order goes out for a diuretic to get rid of some that water. This time we go for something a bit more formidable: 40 mgs of IV Lasix.

1:10 am: Some of my charting is completed, the platelets have infused, the Lasix seems to be working, but it’s time to turn both patients over. I still haven’t eaten. In the background, I hear a nurse arguing with the resident on-call about an emergency room admission. What’s new? There are not enough nurses on duty tonight. We are so short-staffed that I already know that coming off duty in the early morning is not going to be on my chart. Why? If you’re not in nursing, you might not know the mantra: “NOT documented, NOT done.” Remember my typing skills? This is an obstacle to nurses with dystonia.

1:30 am: I notice bloody urine coming from patient #1. With dystonia, you learn to make accommodations and work around the physical limitations. A secret: I usually rearrange the patient’s room so that everything is in my line of sight.Wondering if her liver is failing, I decide to draw her blood and send her lab work off early. She will need more platelets—she is not clotting well.

1:40 am: A patient is dying at the other end of the unit. He’s only 20 years old. The family is living by the bedside. No matter how many times I’ve seen this drama unfold, it never gets any easier.

2:10 am: Now that all the “labs” (as we call them) and diagnostic tests are completed, patient #2 raises my blood pressure to a nightly high. Her heart has gone into a lethal arrhythmia. Running into the room, I pound her on the chest, hoping beyond hope to get a normal rhythm to return. My neck is killing me. The precordial thump works. An EKG and complete labs are ordered. Uh oh, her oxygen level has dropped again. Does she need even more Lasix?

2:40 am: As I’ve now become to feel quite possessive of patient #1’s platelet activity, I feel like celebrating as her number goes up from seven to 24! Just for good measure, the ENT guys order more platelets and some liver function tests. Her blood pressure has been stable. I finish my computerized charting entries. However, due to the dystonia, my arms hurt from hanging bags of platelets on a barely unreachable ceiling pole. What do shorter nurses do?

3:00 am: The few of us on the unit tonight have been running, for what seems like forever. I do not want to come back as a hamster. Forget ordering take-out dinners, forget about even eating the healthy snacks that some of us have packed. In between ringing bells and critical care nursing, we gulp down chips, soft drinks, and the unhealthiest snacks imaginable. What if a dietitian happened to decide to spend the night here? We’d have to find her a bed.

3:10 am: The 20-year-old patient dies. I feel sad. His parents were at the bedside. Morgue care is ordered.

3:30 am: “My” platelets are ready. I ask the unit clerk to pick them up as well as stop by the pharmacy for some newly ordered antibiotics. This is not a medical mercy mission to a third world country, but you’d never know that. The pharmacist, right here in this very large, very busy, NYC hospital decides to let us know in no uncertain terms (read: venting) that the pharmacy doesn’t have the variety that was ordered. Am I in a new Twilight Zone? What kind of pharmacy is this?

4:00 am: Meanwhile, back on the floor, patient-turning is the next activity. What could be worse than trying to perform this task alone, especially when the bed and its surroundings are soaked with diarrhea? This is a job for the true angels of nursing: housekeeping. I clean the patient, giving her a back rub as well as a respiratory treatment. Before leaving the room, I do a platelet check.

4:30 am: Platelets are done. Will this shift ever end? Whatever could go wrong has already happened, I think. My feet hurt. Note to self and other would be nurses with dystonia: Clogs might as well be three-inch heels. My feet turn inwards, but my clogs do not. A new ER admission arrives on the unit. The few of us left standing all help the patient settle in. Do you think that any of us are contemplating Nurses’ Week every May? No. We just want to sit down and go home.

4:45 am: Some of the routine things that nurses do are no longer easy for me to accomplish without help. Night nurses are responsible for changing IV tubes for new ones. This used to be a nonevent, but now I can’t open the packaging without using scissors or a clamp or a helping hand. It’s frustrating.

5:10 am: A minor miracle: My paperwork is up-to-date, and there are only two more hours left to this awful night.

5:22 am: A colleague is having trouble inserting an IV. I offer to help. Even though I am unable to turn my head the “right way” anymore, I can do IVs by instinct. With dystonia, you learn to make accommodations and work around the physical limitations. A secret: I usually rearrange the patient’s room so that everything is in my line of sight. There’s another thing that I have to constantly be aware of since I had DBS: electromagnetic interference. All those security devices may be great, but they can cause havoc with my pacemaker, which goes to my brain rather than to my heart. This, among other things, is anxiety-producing, so my neurosurgeon has me taking a mild dose of Klonopin to reduce stress. Did I remember to take it this  evening/morning? No. I will pay for it on the bumpy bus ride home.

5:47 am: An alcoholic in withdrawal wanders out of his room. His IVs are in disarray, he has a bloody gown, his EKG monitor is off, and he announces to all of us that he is ready to leave. Perhaps we should call the bellboy for his luggage and have the front desk prepare his bill. He resists our cajoling him back to bed and then hits one of the nurses. We call security and the docs. He isn’t listening to anyone.

6:00 am: Perfect timing. The head nurse is now walking down the hallway as the alcoholic is making his way to the nurse’s station. He is using four-letter words and making comments that will not be printed in The New York Times. Where is security? Are they in cahoots with the blood lab people? I really don’t want to be a punching bag, even if I’m beginning to feel like one. If my muscles get any tighter, I may explode.

6:10 am: Security arrives. Using less than spectacular intervention skills, they tackle the patient. Now what? We decide to ship him to the psych ward…stat!

6:24 am: Check patient #2 and discover more diarrhea. She is producing the type of diarrhea that is irritating to the skin and induced by antibiotics. To make matters worse, this 300-pound lady can’t breathe when she is in a prone position. Getting her out of bed would be impossible. I only weigh 115 lbs. Can it get better than this? Sure. There’s no protective cream available. I call my knight in scrubs, Stu, and we clean her up once again. Now I do the “uh-oh” check. Are my neck wires still intact? Yes. I can exhale.

6:45 am: Go back to the charts and enter final vital signs. Also need to compute things like intake and outtake of fluids. Have you ever had to estimate the amount of diarrhea produced? I must have missed this lecture in nursing school.

7:10 am: Patient #1 needs extra IV potassium. I grab a bag from the drug room and hang it on the IV pole. The day-shift staff begins arriving. I actually have a minute to swallow my dose of my medication, which helps relieve spasms related to dystonia.

7:26 am: Before giving a verbal report to the day shift, I review any last-minute orders to make sure nothing was missed. Nothing missed. It’s going to be a good day!

7:45 am: Shift over. Scalp pain erupts. Neck twisting and turning begins. I just want to sleep.

Intensive care nursing with dystonia is not for the faint of heart, but it is possible—and rewarding!


National Institute of Neurological Disorders and Stroke
Includes a detailed fact sheet on everything you need to know about dystonia

Dystonia Medical Research Foundation
Provides information on current research efforts, treatment and support options, and how to get involved

Dystonia Health Global Monitor
An open forum consolidating the latest news, research information, and education resources for a wide range of movement disorder issues

Deep Brain Stimulation
Explains how DBS therapy works and the risks involved