New treatments for Parkinsons patients are in use or being developed to ease the side effects for what can be a debilitating disease, and nurses are helping with research and implementation.
One development is the use of Botox, the injection more commonly thought of as a treatment for reducing wrinkles, said Heintje Calara, RN, MA, Parkinsons specialist and research nurse at NYU Langone Medical Center, Manhattan. Among Parkinsons patients, the drug is used to treat muscle spasms and pain.
Calara is one of two nurses treating Parkinsons patients in NYU Langones Parkinsons and Movement Disorders Center, established in 2007. He said the center has helped shine a spotlight on the disease and helped attract more specialists.
Calara calibrates medications, triages patients over the phone, performs full neurological assessments, recommends treatments to neurosurgeons and refers patients to occupational and physical therapists. He is a clinical researcher and teaches nurses about Parkinsons and other movement disorders. He also helps facilitate clinical trials of new treatments. The longtime gold standard treatment remains carbidopa-levodopa (Sinemet) which is a synthetic dopamine, he said. Though there is a continuous-release version, he said its not as long-lasting as wed like, so a longer-acting form is in clinical trials.
Nursing judgment and assessment for Parkinsons have to be much more advanced than traditional bedside nursing, Calara said. Thats because symptoms are so different.
Each one would have a different presentation of rigidity, posture impairment, freezing of the gait and ambulation impairment, balance disorders, anxiety, vision problems, dental problems, he said. Each one has a very unique presentation. If you see 10 patients that day, you will see 10 different presentations.
Winsome Overstreet, RN, MSN, MBA/MHCMc of NewYork-Presbyterian Hospital, works in the neurology unit and treats Parkinsons patients. The nurses role in administering medication on time cannot be overstated, she said.
When Im assigned to a Parkinsons patient, giving medication on time is a huge focus for me, she said. Theyll be in a chair and movements are free, and if the medication is not given on time, they will freeze and you cant get them out of that chair. Giving the patient medication after they freeze can be very difficult, Overstreet said, because they may also not be able to swallow.
Preventing falls is key because of lack of flexibility. Patients generally arent able to catch themselves, depending on their level of rigidity. Assessment comes with educating patients on the risks of falling.
NewYork-Presbyterian has two movement centers: the Center for Parkinsons Disease and Other Movement Disorders at NewYork-Presbyterian Hospital/Columbia University Medical Center, established in 1941, and the Parkinsons Disease and Movement Disorders Institute at NewYork-Presbyterian/Weill Cornell Medical Center, established in 2003.
Current research at the centers includes identifying prevalence of Parkinsons in various populations and developing a blood test or brain scan that would detect the disease before symptoms appear.
Changing the game
Jacqueline Cristini, MMSc, is a physicians assistant at JFK Medical Centers New Jersey Neuroscience Institute in Edison. She specializes in care surrounding deep brain stimulation, a procedure for Parkinsons that she calls a surgical game changer. She coordinates the DBS program at the institute and also conducts in-service training for nurses on what symptoms to look for and when to refer a patient for Parkinsons. Cristini said she instructs nurses and families about the disease because medications are complex and must be delivered on time at regular intervals.
Because longtime use of the medications can have side effects and over time requires an increased and more frequent dose, DBS has been an important development, she said. Electrodes usually are implanted on both sides of the brain and connected to a battery implanted in the chest. The patient is awake during surgery so the surgeon can see whether treatment is working, she said.
Its quite astounding when you see a severe tremor completely stop, she said.
Cristini programs the generator after surgery and tests the contact points. Once symptoms begin to diminish, medication gradually can be lowered. Neurosurgeons are using DBS earlier and more often, she said.
Ten years ago when we started doing the surgery, patients had to be diagnosed for at least five years, she said. Though patients have to meet requirements for surgery, they can start DBS soon after diagnosis.
The few, the proud
Few nurses specialize in Parkinsons, according to Calara. They are more likely to specialize more broadly in movement disorders under the umbrella of neurology. He said that is because specializing in Parkinsons takes extensive training and there are few qualified trainers. Calara asked a mentor if he could be an apprentice of sorts.
Parkinsons is a specialty that Calara is trying to raise awareness about in collaboration with national foundations.
Even training in neuroscience in general wont prepare you for Parkinsons, he said.
Marcia Frellick is a freelance writer.