Being in the hospital — for any reason — can temporarily worsen Parkinson’s disease (PD) symptoms. There are many potential causes. These could include the stress of being sick or the illness itself, an unfamiliar environment, sleep interruptions, new medications, not getting PD medications on time, and other factors. While in the hospital, many people with PD experience an increase in ongoing symptoms. Others have new symptoms, such as confusion or seeing things that aren’t there.
Having Parkinson’s does increase the risk of hospitalization. But that doesn’t mean it’s inevitable. And there are steps you and your loved ones can take to make hospital visits, if they do happen, as safe and productive as possible. Consider these tips:
Keep a medication list
This is a handy tool to share with your hospital care team. Make sure to list your:
Prescription drugs, over-the-counter drugs, supplements, herbs and any other non-prescription therapies. Include what each is for, which doctor prescribes or recommends, and how you take it. For Parkinson’s medications, write the times you take the drug, not just how many times per day. For example: Carbidopa/levodopa (Rytary) 23.75mg/95mg 3 capsules at 7am, noon and 5pm; not “three times a day.” And don’t forget surgical and other therapies, such as deep brain stimulation (DBS), focused ultrasound, botulinum toxin (example: Botox) or carbidopa/levodopa gel (Duopa).
- Drug allergies
- Surgeries, including deep brain stimulation (DBS) or focused ultrasound.
- Devices, such as DBS or a pacemaker.
- Your physicians, which medical condition they treat, and their contact information. Also find out with which hospital(s) your doctors and their colleagues work. That way, if you need hospital care, your personal team can directly participate.
Review this list regularly with your doctors, make updates as soon as necessary, and keep written copies or printouts on hand for appointments and hospital visits.
Take medications along
- If you go to the hospital, bring all your medications, in their original bottles or containers. This helps hospital staff confirm your medication regimen and schedule. If the hospital pharmacy does not carry one or more of your medications, you can ask to take your own supply. (For safety reasons, the hospital staff oversees and documents what you take and when.)
Pack personal items
- In case you need to stay overnight, bring your eyeglasses, hearing aids and any other personal items. These can help keep you as comfortable as possible while minimizing confusion that can arise in an environment you’re not used to.
- Don’t forget a copy of advance directives, which list your health care power of attorney and your care goals. This does not imply you should expect the worst — only that you and your hospital providers want to be on the same page. No matter the reason for your hospital visit — from the most minor to most significant — your care team wants to know you and your wishes. (Download MJFF’s free guide for more on advance directives and other future planning.)
Request medications on your — not the hospital’s — schedule
- In general, hospitals administer scheduled medications at set times. A three-times-a-day medicine, for example, might be given at 8am, 12pm and 4pm. Talk to your nurse and your doctor about which exact times of day you take medication and why. Is it because you need to separate medication from meals? Because medication wears off and symptoms return after three hours? Your team can work out a plan to get you medication on time.
- Sometimes, you’ll have to fast for several hours before or after a procedure. Make sure to ask about continuing your Parkinson’s medications during that time. If you’re unable to take pills for an extended period, your team, in consultation with you and your PD doctor or hospital neurologist, may need to temporarily adjust your meds.
Watch for medications that might worsen symptoms
People with Parkinson's should avoid medications that can temporarily worsen movement and other symptoms. These include certain:
- Anti-nausea drugs, such as Phenergan (promethazine), Reglan (metoclopramide) and Compazine (prochlorperazine)
- Pain medications, such as Demerol (meperidine)
- Anti-psychosis drugs, which may be used for hallucinations, confusion or sleep problems. Examples include Haldol (haloperidol) and Risperdal (risperidone).
Know that this is not a complete list and there are suitable alternatives. And speak up every time you’re offered a new medication. Ask what it’s for, whether it might worsen Parkinson’s, and what side effects it might cause.
Remind your team about Parkinson’s
- Whenever your doctor discusses the plan, a nurse gives medication, or technicians or radiology staff prep to perform a test, remind them you have PD. Most medications and medical tests are safe for people with Parkinson’s. But those who’ve had deep brain stimulation (DBS) may need to take extra precautions around procedures. For a heart EKG or brain EEG, for example, the device may need to be turned down or off so it doesn’t interfere with recordings. An MRI may be permitted under certain circumstances, but it depends which body part is imaged, what type of MRI machine is used, and what kind of DBS device you have.
Update your Parkinson’s doctor
- Let your doctor’s office know which hospital you’re in and why. Better yet, request that the hospital team contact your doctor. Depending on your personal physician’s agreement with the hospital, they may or may not be able to visit the hospital to treat you directly. But they can discuss your care and advise on PD treatment. Most hospitals also have neurologists on staff who can see you and consult with your personal neurologist or Parkinson’s doctor, if necessary.
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 have trouble swallowing or pneumonia, a speech therapist can check swallowing and recommend a safe diet. A social worker can help build and coordinate post-hospital care plans.
Speak up for yourself or your loved one
- You are your own — or your loved one’s — best advocate. Don’t be afraid to speak up if something doesn’t feel right. And ask as many questions as you need to fully understand what’s going on. Medicine can sound like a completely different language. And being in the hospital can make a person feel scared or vulnerable. It’s your doctor’s and your care team’s job to make sure you feel as comfortable as possible and to explain things in a way you understand.
- Have a loved one join your conversations, either in person or by telephone. (If a loved one can stay with you in the hospital, even better.) Take notes. Include the name and position of the person with whom you speak. (Your team may involve many different members and can change from day to day.) Repeat back to ensure you heard correctly and understand.
For information and tips on surgery and Parkinson’s, read our blog. And check out our Ask the MD blogs and videos for more on PD care and research.