Whether you’re in the emergency room, admitted to the hospital, staying overnight for observation or planning surgery, Parkinson’s symptoms and medications require special attention. Being in the emergency room or hospital — for any reason — can temporarily worsen symptoms or trigger new ones, such as confusion or falls. Possible causes include the stress of illness, the illness itself, an unfamiliar environment, sleep disruption, new medications or delays in receiving Parkinson’s medications on time.
Here, we outline steps you can take to help make hospital and emergency care as safe and effective as possible for you and your loved ones.
How to Plan for Hospital or Emergency Care
While emergencies or hospital visits can’t always be anticipated, planning ahead can make a big difference when urgent medical care is needed.
1. Keep an up-to-date copy of your Parkinson’s care and care team
Having a current record of your Parkinson’s care can help ensure you receive the right treatment. Compile the following information into a single document and update it after each medical appointment:
- Medications: List prescriptions and over-the-counter medications, supplements and herbs, as well as what times of day you take each. For medication pumps, include infusion rates and other settings as well as how often you change the infusion site.
- Surgeries: Include surgery dates and other details for deep brain stimulation (DBS) — including the last programming date and battery change — or focused ultrasound.
- Drug allergies: Make it easier for health care teams to identify medications you should avoid, including drugs that may worsen your Parkinson’s symptoms.
- Clinicians: Keep a list of your care team members and their contact information so providers can coordinate care when needed. Don’t forget your neurologist’s after-hours or on-call number and ask your team what to do if you need assistance outside normal office hours.
2. Know who to call about DBS or medication infusion pumps
Device-specific questions often require specialized expertise, so identify the appropriate contact before a problem arises. For example, a device representative may be able to help troubleshoot or answer questions about what to do if you need an MRI or other medical test or when to disconnect or turn off a device. Confirm this information is on your device card and that it’s current and correct.
3. Learn where your neurologist has permission to practice
If hospitalization becomes necessary, receiving care at a hospital where your neurologist can see patients may make communication and coordination easier.
What to Bring to the Hospital or Emergency Room
A trip to the hospital can feel overwhelming, especially when you’re not feeling your best. Packing a small hospital-ready kit in advance can help reduce stress and ensure you and your health care providers have what you need to care for your Parkinson’s effectively.
1. Medications
In addition to a medication list, bring your medications in their original containers. This can help hospital staff confirm your medication regimen and dosing schedule.
2. DBS device card
Your “wallet card” has the details of your DBS system — including the device company, model numbers, implant date as well as your doctor’s and the company’s contact information.
3. DBS handheld programmer
Including your programmer in your bag will be helpful in the case you need to temporarily turn off the device or put it into the proper mode for an MRI, for example. If you have a rechargeable device, also take your charger in case you end up staying longer.
4. Infusion pump supplies and backup pills
Having extra supplies on hand is critical in case you need to change your site or take oral medication if your pump is disconnected for several hours.
5. Personal items
Pack your eyeglasses, hearing aids and any other personal items, particularly if there’s a chance you might stay overnight or longer. Having these items on hand to maintain your vision and hearing can help to minimize confusion that can naturally arise in an environment you’re not used to.
6. Advance directives
Take a copy of any advance directives, including your health care power of attorney and care preferences. This doesn’t mean expecting the worst; it simply ensures that you, your loved ones and your health care team follow your wishes should important decisions arise.
What to Discuss with Hospital or Emergency Care Teams
During a hospital visit, it’s extra important to speak up about your Parkinson’s needs. These are some of the most important topics to discuss with your care team.
1. Your Parkinson’s treatments and devices
See the “cheat sheet” below for a handy discussion guide.
Considerations around DBS and Infusion Pumps
Inform your team whether you have any of these therapies. For DBS, let the team know when the device was last checked or programmed and when the battery was replaced or last charged. For infusion pumps, share the infusion rate, any recent notifications or malfunctions, and the last time you changed the site.
Remind the team about these therapies before any testing, including MRI. DBS devices are generally safe for MRI, as long as certain conditions are met. Pumps must be disconnected for MRI — and, if left unhooked for more than an hour, the infusion site must be changed. (If you need to be disconnected longer, make sure to also discuss a medication coverage plan.)
2. Importance of taking medications consistently on your — not the hospital’s — schedule
In general, hospitals administer scheduled medications at set times. A three-times-a-day medicine might be given at 8am, 12pm and 4pm, for example, which may differ from your usual schedule. Share your specific timing so you can get medication consistently and on time.
3. Whether you can use your own supply of medication, if needed
If the hospital pharmacy does not stock one or more of your medications, ask whether you can use your own supply. For safety reasons, the hospital staff oversees and documents what you take and when.
4. Changes to diet and medications during your hospitalization
Sometimes, you may need to avoid eating or drinking for several hours before or after a procedure. Or your care team may want to test swallowing before you eat to make sure food and liquids are going down safely. Ask how you can continue your Parkinson’s medication during these times.
If you’re unable to take pills for an extended period, your team may need to consult with your Parkinson’s doctor or a hospital neurologist to temporarily adjust treatments.
5. What you need to be comfortable
That could be a warm blanket, more pillows or even a moist swab for dry mouth — anything that will help you feel more at ease.
6. What medications to avoid
Some medications can temporarily worsen Parkinson’s movement symptoms. These include certain:
- Anti-nausea medications: These include drugs like Phenergan (promethazine), Reglan (metoclopramide) and Compazine (prochlorperazine) which work against dopamine. For people on Onapgo (apomorphine), these also include Zofran (ondansetron) and other 5-HT3 antagonists.
- Anti-psychosis drugs: These include a class of medications called “typical” antipsychotics — like Haldol (haloperidol) or Risperdal (risperdone) — which might be used for hallucinations, confusion or sleep problems.
- Pain medications: Demerol (meperidine) can interact with MAOB inhibitors like Xadago (safinamide), Azilect (rasagiline) or selegiline. Prolonged use of opioids is also not recommended, as it can worsen constipation.
- Sleep aids: Sedating medications can increase confusion and the risk of falls, so they should be used carefully.
Many symptoms, including those listed above, can and should be treated. In fact, leaving symptoms such as pain untreated can worsen Parkinson’s symptoms and contribute to confusion. The key is making sure any medications used are appropriate for people with Parkinson’s.
Consider adding these medications to your allergy list. And whenever a new medication is prescribed or administered in the hospital, ask what it is for, whether it could affect your Parkinson’s symptoms and what side effects it may cause.
How to Advocate for Yourself or Your Loved One
Advocating for Parkinson’s care can feel like a big undertaking, even under normal circumstances. But asking questions, sharing concerns and speaking up about needs can help ensure you or your loved one receives the safest and most appropriate care.
1. Update your Parkinson’s doctor
Let your doctor’s office know which hospital you’re in and why. Or ask the hospital team to contact your Parkinson’s doctor directly. Your doctor may or may not be able to visit or treat you directly. But they can likely discuss and advise on your care. Many hospitals also have neurologists on staff who may consult with your personal Parkinson’s doctor, if necessary.
2. Make your needs known
Don’t be afraid to speak up if something doesn’t feel right and ask as many questions as needed to understand your care. Remember it’s your care team’s job to make sure you feel as comfortable as possible and to explain things in a way you grasp.
Have a loved one join you if possible, and take part in conversations — even by telephone, if needed. Take notes that include not only the plan but also the person who shared the information and their role on your care team. (Team members may change regularly throughout hospital stays.) Repeat things back as needed to ensure you’re following the information being presented to you.
3. Get other team members on board
Depending on how long and why you’re in the hospital, you may want to see a physical, occupational or speech therapist. Physical and occupational therapists can help you stay active or move your muscles. If you’ve been diagnosed with pneumonia or have trouble swallowing, a speech therapist can check swallowing and recommend a safe diet. A social worker can help build and coordinate post-hospital care and/or rehab plans.
Cheat Sheet for Communicating with Your Hospital Care Team
The medical information contained in this publication is for general information purposes only. The Michael J. Fox Foundation for Parkinson’s Research has a policy of refraining from advocating, endorsing or promoting any drug therapy, course of treatment, or specific company or institution. It is crucial that care and treatment decisions related to Parkinson’s disease and any other medical condition be made in consultation with a physician or other qualified medical professional.
