When you’re living with Parkinson’s, hospital stays—planned or unplanned—require special consideration. Here, we’ll share how to prepare for a hospital stay, where to find helpful worksheets, checklists, and kits to take with you, and additional information that can keep you feeling your best during and after your stay.
Prepare Yourself for Changing Symptoms
Your motor symptoms can worsen when you are coping with a medical illness in addition to your Parkinson’s; so, during a hospital stay, you might not be able to move as well as you usually can. You might also find that some symptoms, such as tremor, dyskinesia, and freezing, worsen during a hospital stay or emergency room visit. Similarly, confusion and hallucinations can occur or worsen in the setting of medical stress or as a result of new medications, such as narcotics for pain, or sedatives for sleep, anxiety, or agitation. Being aware that these symptoms might appear or worsen can help you feel more prepared and, just as importantly, inform others about what might occur and how to treat your symptoms during your hospital stay.
Worksheets and Hospital Kits
On our blog post full of Parkinson’s checklists, worksheets, and assessments, you can find several documents to help you capture and share medical information. A few to complete and take with you during your hospital stay include “Prepare for Your Hospital Stay,” “Medical Summary for Your Doctor Appointment,” and “Daily Medication Log.”
Also, take with you the “Current Symptoms Summary,” which will make it easier for your hospital care team to understand and recognize your symptoms; they may not be familiar with problems such as dyskinesia, ON-OFF fluctuations, and freezing of gait. Be sure you and/or your care partner or friend let your care team know how your movement and abilities change during the medication’s ON and OFF states. This information will also help the hospital care team understand why it is vital that you get your medications on time.
At the very least, make sure you arrive at the hospital with a complete, updated list of your medications, dosages, and the times of day that you take them. Be sure your hospital care team understands that you MUST receive your Parkinson’s medications on time. Ask if you or your family can keep medication at your bedside to ensure you’re able to take it on schedule. If they don’t comply with your request, have a plan to contact your movement disorder specialist, neurologist, or your other prescribing physician so they can advocate for you.
If you have serious medication, latex, or tape allergies, or if you have a surgical implant, wear a medical alert bracelet during your hospital stay. If you have a stoma for enteral suspension (Duopa/Duodopa) or Deep Brain Stimulation (DBS), include the manufacturer’s phone number on the medical alert bracelet in case of emergency.
For more Parkinson’s hospital resources, check out the Parkinson’s Foundation’s “Aware in Care” kit, designed for people with Parkinson’s to use before, during, and after a hospital stay. Learn more and request your kit here.
Ask and Advocate (for Yourself)
As soon as you arrive for your hospital stay, discuss your medication needs with your nurses right away. Remind, remind, remind them how important it is that people with Parkinson’s get their medications on schedule.
Sometimes, treatments in the hospital cause difficulty swallowing or eating; if this is the case, ask your providers about taking dissolvable carbidopa/levodopa instead of regular pills.
During your stay, ask for a physical and occupational therapy consult, swallowing evaluation, and/or speech therapy consult, as illness and prolonged bedrest can weaken your body and affect your ability to complete daily activities. Also, consider asking to see a social worker, especially if you have questions about community resources, special needs after discharge, or changes in living arrangements. Chaplain services are available in most hospitals and are there to support you no matter what your spiritual needs or beliefs. If you have had a severe illness or surgery, ask your neurologist and doctor about inpatient (hospital-based) rehabilitation or home health services that may include social work, nursing, dietary assistance, or rehabilitation services.
Questions to Ask before Discharge
- Have my neurologist and primary care physician been notified of my condition while I’ve been in the hospital?
- When should I next visit my primary care physician?
- Should I receive additional rehabilitation, such as physical therapy?
- What important tests, procedures, or new diagnoses have I received?
- What medications have been changed and why?
- How can I get a copy of the hospital records sent to my doctor?
Hospital Tips for People with Duopa or Deep Brain Stimulation
Be sure your doctors and nurses are informed about your enteral suspension (Duopa/Duodopa) or DBS. In many cases, if you have DBS, an MRI and diathermy cannot be performed without risk of serious injury to you. Use our DBS Medical History form to provide your hospital care team with the appropriate information about your DBS if a surgery or procedure must be performed.
Medications to Avoid
Some medications can worsen motor symptoms of Parkinson’s, including slowness, stiffness, tremor, and dyskinesia. These drugs we’ve listed below are used to treat psychiatric problems such as hallucinations, confusion, or gastrointestinal problems such as nausea. The stress of your illness, hospital stay, or new medications can increase your risk of hallucinations or delirium while hospitalized. New onset delusions, paranoia, and agitation signal to the medical team that a longer hospital stay or skilled nursing facility may be required before going home.
The anti-hallucination medications quetiapine (Seroquel®), clozapine (Clozaril®), and pimavanserin (Nuplazid®) can be used with Parkinson’s. Of these, Nuplazid is the only anti hallucination medication approved for Parkinson’s.
The following anti-hallucination medications (listed by generic or chemical name followed by the trade name) should be avoided:
- Aripiprazole (Abilify®)
- Chlorpromazine (Thorazine®)
- Haloperidol (Haldol®)
- Molindone (Moban®)
- Perphenazine (Trilafon®)
- Perphenazine and amitriptyline (Triavil®)
- Risperidone (Risperdol®)
- Thioridazine (Mellaril®)
- Thiothixene (Navane®)
Serotonin (5-HT3) antagonists work to block the effects of serotonin in order to reduce nausea and vomiting and to minimize symptoms of Parkinson’s. Ondansetron (Zofran®), dolaseton (Anzemet®), and granisetron (Granisol™) are acceptable alternatives to the list below. Older and cheaper anti-nausea medications block dopamine, therefore, worsening Parkinson’s symptoms.
The following should be avoided:
- Metoclopramide (Reglan®)
- Phenothiazine (Compazine®)
- Promethazine (Phenergan®)
Medications to Avoid if You Take Rasagiline (Azilect®) or Selegiline (Eldepryl®)
- Pain medications meperidine (Demerol®), tramadol (Ultram®), and methadone
- Antispasmodic medication (Flexeril®)
- Dextromethorphan (cold medication) and ciprofloxacin (antibiotic)
Note: This is not a complete list of medications to avoid. If you have questions about other medications, ask your pharmacist or doctor.
Remember, advocate for yourself and your needs throughout your hospital stay, or be sure your care partner or a friend is there to advocate for you. You and/or your care partner should stress to your hospital care team how important it is for you to take your medications on time and share with them how your symptoms may present differently while you’re there. Request services and appointments that can help you manage your symptoms and live well during and after your visit.
WANT MORE PRACTICAL ARTICLES LIKE THIS?
Much more can be found in our Every Victory Counts® manual. It’s packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Request your free copy of the Every Victory Counts manual by clicking the button below.
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