“Getting the Care You Need: Parkinson’s in the Hospital” – Webinar Notes

“Getting the Care You Need: Parkinson’s in the Hospital” – Webinar Notes

On February 5th, the Parkinson’s Foundation (PF) hosted a webinar “Getting the Care You Need: Parkinson’s in the Hospital,” which focused on the challenges those with PD have in the hospital. 

The speakers were neurologist Fenna Phibbs, MD, Stan Jones, an Aware in Care ambassador, and Annie Long, the Associate Director of community programs at the Parkinson’s Foundation. Annie Long provided an overview of which challenges Parkinson’s patients might face in the hospital. Dr. Phibbs provided recommendations on how to best educate your care team if you are hospitalized. Additionally, although it is not a part of the webinar topic, she went into detail how COVID-19 has changed the hospital experience for Parkinson’s patients and provided information on how to mitigate this.  Stan Jones reviewed the Aware in Care documents and kits provided by the PF, that provides medical cards, medication sheets and more to best help you inform your hospital care team on your care needs. 

For most people, the transition from hospital to home is the challenging part, but for people with Parkinson’s Disease (PD), it’s the reverse. Additionally, people with Parkinson’s are hospitalized 44% more than their peers without Parkinson’s. Often, the care team is not well versed in Parkinson’s as they cannot be experts in everything, so it is your responsibility to ensure they are educated so you can receive the best care during your planned or unplanned hospital stay. This webinar highlights the importance of exercise, medications, and medication timing among other factors. 

For more information on how to order the Aware in Care kits along with other resources, visit the Stanford’s Parkinson’s Community Outreach page.

For more resources on Parkinson’s and COVID, please see the Stanford’s Parkinson’s Community Outreach page.

The webinar recording can be viewed on the Parkinson’s Foundation YouTube channel here.

Please see below for notes on the February 5th webinar.


– Joëlle Kuehn

“Getting the Care You Need: Parkinson’s in the Hospital”

Speakers: Annie Long, Associate Director of Community Programs, Parkinson’s Foundation; Fenna T. Phibbs, MD, neurologist, Vanderbilt; Stan Jones, Aware in Care Ambassador, Parkinson’s Foundation

Webinar Host: Parkinson’s Foundation Tennessee-Kentucky Chapter

Webinar Date: February 5, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Introduction – Annie Long

Interesting facts:

  • On average, 1 in 5 Medicare beneficiaries discharged from the hospital is readmitted within 30 days
  • For most people, the transition from hospital to home is the challenging part
  • For people with Parkinson’s Disease (PD), it’s the reverse.
  • For people with Parkinson’s, the hardest part is navigating the system, and getting the care you need

Assumptions we might make about hospitals (mostly pre-COVID):

  • They will call my neurologist, not assign one at random
  • Staff will understand PD symptoms
  • They will bring me my meds on time
  • The pharmacy will have my PD meds
  • They will know the drugs that are unsafe

Unfortunately for people with PD it isn’t as simple:

  • 1 in 3 people with PD will go to the hospital on an annual basis (whether planned or unplanned)
  • 3 of 4 people do not get their medications on time (as we know timing is very important to ensure the medications are working best), or they do not get the correct medications
  • 2 in 3 patients with PD who did not get their medication correctly or on time will have complications
  • People with Parkinson’s are hospitalized 44% more than their peers without Parkinson’s
  • People with PD suffer avoidable complications at a higher rate than non-PD patients
  • This yields longer hospital stays than non-PD patients, and more procedures due to the complications

Why is this happening?

  • Even in the best hospitals, there can be a lack of understanding about Parkinson’s disease, especially now with everything going on with COVID
  • Non-PD specialists may not be fully aware of the critical importance of PD medication timing
  • Hospital staff may not know that many common medications can be unsafe for people with PD
  • Hospital pharmacies may not stock all PD medications 
  • Only 25% of hospitals have a mechanism in place to contact a person’s Parkinson’s doctor upon admission – this is low!
  • 70% of hospital staff are unaware of the drugs that worsen PD motor symptoms or are contraindicated for people with Parkinson’s. Many commonly prescribed ER medications are contraindicated for people with PD. 

There is a lack of awareness:

  • Of the critical importance of PD medication timing
  • That many common medications for pain, nausea, depression and psychosis are unsafe for people with PD
  • That poorly managed PD might result in mental confusion and other serious symptoms

Hospitals are complicated – there are a lot of providers all involved, who would need knowledge in Parkinson’s to give you the care you need:

  • Physicians/Surgeons
  • Physical therapists
  • Social workers
  • Dieticians
  • Pharmacists
  • Nurses

There are also people involved in getting you to the hospital which opens more places for errors:

  • Emergency Admissions (Ambulance)
    • First responders
    • If you are admitted to the ER:  ER nurses, ER physicians
  • Planned Admissions
    • PD Patient MD
    • Unit nurses

Things that may seem like minor errors by these people can create a crisis for people with PD going to the hospital

Challenges in Parkinson’s care:

  • PD is often not the primary reason for being admitted to the hospital
    • Could be an underlying condition, something unrelated completely
    • Physicians could possibly not focus enough on PD  or take it into consideration enough
  • Providers lack necessary PD expertise
  • PD medication regimens are complex and medication changes can result in negative outcomes
    • Many medications are used to treat Parkinson’s – good that there are many treatment options available but this makes it complicated in the ER
    • Contraindicated medications are not often recognized
    • Changes in times/dosing of medication can affect the patient’s status
    • Compromised swallowing ability may dictate a change in medication formulation
  • PD patients often have complex mobility issues
    • PD patients should mobilize as soon and as often as conditions allow
    • Ambulation (walking often and as early as possible) reduces chance of worsening rigidity and associated symptoms
    • PD patients are at heightened risk for falls
    • Patients and care partners should discuss risks associated with lack of movement with the doctor and physical therapists

Part 2: Impact of COVID-19 and hospitalization on PD (by Dr. Phibbs)

Interesting facts:

  • Parkinson’s disease does not increase risk for contracting COVID
  • People with PD are at a higher risk of having complications with COVID despite having a normal immune system because they are usually:
    • Elderly
    • Mobility is impaired
    • Prone to quick muscle deconditioning if lungs and muscles are not used often
    • Susceptible to pneumonia (a complication of COVID)
    • Often with maturity feature comorbid medical conditions

Effects of COVID-19 on Parkinson’s:

  • Community-based study done in Italy 
  • If people are sick, the PD symptoms will act up, and COVID amplifies that as well
  • There is also an increased risk of chronic stress, which can also worsen symptoms
  • COVID is isolating and can impact PD patients caregivers and their care team
  • There is a reduction in physical activity (less classes or options for physical therapy, no boxing, gym’s are closed, etc)

Exercise options:

  • Getting outside and walking
  • Fitness channel on TV
  • Exercise options via the Parkinson’s Foundation:  Cleveland Clinic LSVT; Chair yoga for seniors; Senior fitness with Meredith; Walk at home with Leslie Sansone; Rock Steady Boxing.  This can also help because it increases interactions with people.

What do you do if you suspect you have COVID-19?

  • Call your primary doctor to ask how to get COVID testing in your area
  • Do not lie flat – make sure you still try to stay active despite the fatigue to keep up lung activity and reduce the chance of pneumonia
  • Remember to expand your lungs as often as possible – deep breaths, voice therapy (yelling, sing)
  • If you have symptoms such as: shortness of breath, bluish discoloration of lips or hands, excessive sleepiness, or confusion, go to the ER 
  • If in the hospital, request:
    • respiratory therapy to keep the lungs engaged and open and clear, such as incentive spirometry
    • Try to walk around, stay active, and initiate physical therapy early
  • Other resources:

What is an emergency that requires an ER visit:

  • Sudden chest/jaw/shoulder pain and/or shortness of breath
  • Sudden onset of new neurological symptoms (COVID in some patients can cause strokes)
  • Severe intractable abdominal pain with nausea, vomiting, diarrhea or dehydration

There are also elective procedures that aren’t emergencies but still need to be taken care of to improve quality of life. Your doctors will discuss what should happen and what can wait:

  • Joint replacement surgeries
  • Cataract surgery
  • Deep brain stimulation (DBS)
  • Spine surgery
  • CT, MRI, barium swallow, or other imaging studies
  • colonoscopy

Other reasons to go:

  • Medication infusions and/or hemodialysis

If you have an emergency, please go to the hospital – do not delay care because of concerns for COVID. An emergency is still in an emergency

Considerations for your hospitalization:

  • You may not be able to have your care partner with you
    • May be someone that helps with medication, ensuring you are taking them on time, and could be an advocate for you, it can be lonely if they are not there
  • Parkinson’s patients are at a higher risk of developing hospital delirium
    • Hospitals are always “on”, the lights are always on, someone is always awake, it can be confusing
    • Having someone there that you know cna help you and help orient you
    • Things that can help:
      • Turning the lights off
      • Try to mitigate noise
      • Be careful with medication
      • Most important: having family members with you, or have a device that allows you to call or see family members to provide familiarity
    • Many doctors and nurses are not educated about Parkinson;s, particularly the importance of medication timing and dosing
      • You need to make yourself knowledgeable so you can educate the nursing staff and explain the importance of medication timing 
    • Important to bring the bottles with you so that you have the correct dosage and medication form 
    • Each nurse often cares for 5-7 patients at one time, all of whom have complicated medication administration regimens
      • Because of COVID,  nurses are pulled to the COVID unit, and the ones in the hospital treating you may not have experience in this area
      • Nurses that are on the floors are possibly not neuro-nurses, and aren’t used to taking care of these patients
    • Shift changes can mean information may get lost in the hand-off, try to make it as thorough as possible but it is possible that information does not get passed along
      • Most hospitals have nurse handoffs at 7am and 7pm
      • You’ll have to repeat your story frequently
    • They aren’t able to carry all medication, and pharmacy formularies often do not carry certain PD medications such as Rytary, Droxidopa or Nuplazid
      • If you have a planned hospitalization, it is good to talk to the physician about your medications and see if it something they can provide
      • If it isn’t planned, talk with the nursing staff, some hospitals even have a pharmacist on the floor that can help with medication
    • You may have the emergency care at a hospital that isn’t your standard hospital, and the hospital may not have access to records from your neurologist or a direct way of contacting them

How to prepare for your hospital visit:

  • Research hospital’s visitor policy if you have a planned procedure
    • It is rapidly changing due to COVID – ensure you know the most up to date one
  • Be prepared to educate your medical team about PD
  • Bring a detailed medication list and the associated bottles
    • Make sure the bottles are accurate
  • Try to have information about a loved one or person making decisions for you if you are unable to: have health care POA and/or emergency contact on hand
  • Bring your cell phone and a charger so you can have continued access to your family and loved ones to keep you company
  • If possible, choose hospitals affiliated with your neurologist’s practice
  • If you have a planned procedure, talk to your neurologist ahead of time about what kinds of changes to your medication regimen would be safe or necessary during a hospitalization
    • What other medications can I or can I not take
    • What should I expect?
  • Contact your neurologist’s office to make them aware you are in the hospital. Bring contact information for your neurologist to the hospital and ask your medication team in the hospital how your neurologist can contact them
    • Physicians can’t reach out and contact that team, but the team can call the physician

When you are at the hospital:

  • Advocate and insist that a care partner be allowed to stay
    • Sometimes they are allowed to stay overnight, and that person can assist with small things for the patient
  • Some hospitals may allow care partners to administer medications if the nurses are unable to administer on time
  • Distribute educational material about your disease and your dosing
  • Ask your medical team to contact your neurologist
  • Insist that any changes to your Parkinson’s medication be discussed with your neurologist, unless an emergent solution
  • Advocate for early initiation of physical therapy because it can only take a few days for you to get weak
  • If things aren’t going well, you or your health care POA can ask to speak with the charge nurse or patient relations


  • There are a lot of ways to get information, your state and county’s health departments
  • You should get the vaccine
  • There is no evidence that if you have Parkinson’s disease you won’t do as well with the vaccine
  • The goal is to keep you as healthy as possible to try and avoid worsening symptoms
  • Note: the Parkinson’s foundation website has up-to-date information on COVID, as well as a webinar on the vaccine.

Part 3: Aware In Care Information ( by Stan Jones)

  • There is a tool to help you address the challenges and better communicate with the team you will be working with
  • It is provided by Aware In Care Ambassadors

Aware in Care Ambassadors are Parkinson’s Foundation Volunteers trained to communicate and educate:

  • The PD community: if people with PD know what they need, they are more likely to get appropriate care
  • Clinicians who treat PD: if clinicians help spread the word about resources, we can share them with more people with PD
  • Hospital staff: if staff know what people with PD’s needs are and why, they are more likely to adjust the care given

They have provided an Aware-In-Care Kit!

  • Provides communication tools and support optimum care for people with Parkinson’s
  • Prepare for a planned or emergency hospital stay
  • Helps communication between patients/caregivers and hospital staff regarding care needs
  • You should have it in a place that is easy to find

3 ways to access free aware-in-care information:

  • Aware in Care kit
    • Order online with a $8 shipping charge
    • Distributed by Centers of Excellence or Parkinson’s Foundation Staff and Volunteers at no charge
    • Has everything discussed today
    • What is in it:
      • Medical alert card
      • ID bracelet
      • Fact sheet for nurses
      • Medication form
      • Doctor’s letter
      • Hospital Action plan
      • Notebook to take notes on medications, treatments and tests you get
  • Aware in care Packet
  • Just the paper content – will be mailed for free
  • What is included:
    • Medical alert card
    • Fact sheet for nurses
    • Medication form
    • Doctor’s Letter
    • Hospital action plan
  • Online Download:
    • Download and print the information yourself
    • Access all printable resources online for their own use without cost
    • parkinson.org/AwareinCare
    • What is included: 
      • Medical alert card
      • Fact sheet for nurses
      • Medication form
      • Doctors letter

To order the kit:


By phone: 1-800-4PD-INFO (1-800-473-4636)

Printable materials for online download.

What is in the kit:

  • Medical Alert Card:
    • Fill in your card with emergency contact information and place in your wallet
    • Personal information, medications to avoid and safe alternatives
  • ID bracelet that you can wear, hypoallergenic and waterproof
    • It directs medical personnel to alert card
    • It says “I have Parkinson’s, I’m not intoxicated”
    • Motion disorders and speech disorders are sometimes misinterpreted
  • Fact Sheet for nurses:
    • Shares vital information about Parkinson’s with every member of your care team
    • Take multiple sheets with you for your different care team members 
    • Includes:
      • Critical care considerations
      • Medications to avoid and safe alternatives
      • Common PD symptoms
      • Typical PD medication
      • Information about deep brain surgery (DBS) and Duopa
  • Medication form:
    • Personal information – caregiver, primary physician
    • Medications: dosage, frequency, timing etc.
    • Special considerations: DBS device, duopa pump, trouble swallowing, dementia and confusion, etc
    • Can fill it out after printing, or online and print the filled out page
  • Hospitalization Doctor’s Letter
    • Ask your primary Parkinson’s care provider to sign the letter
    • Itt has contraindications and concerns, potential infection impact to Parkinson’s symptoms, importance of adherence to the Parkinson’s medication schedule
    • Recommending self-administration if there are restrictions given COVID-19 crisis
    • If there are proposed medication changes, the doctor’s contact information is at the bottom 
  • Hospital action plan
    • Read about how to prepare for next hospital visit – whether it is planned or an emergency
    • Includes:
      • 6 steps to optimum care
        • Step 1: prepare aware in care kit – make sure contents provided with kit are completed and up to date
        • Step 2: find a good hospital – get to know hospitals in your community before you need one; map out where you will go in the event of an emergency; it is your right as a patient to ask questions, so call ahead
        • Step 3: be vocal – each time you are asked about the medications you take, provide a copy of the medication form; if you brought your medications with you (in their original bottles) to the hospital, let your nurses and doctors know; ask to see a patient advocate
        • Step 4: get moving – soon after your medical procedure, it is vital that you get out of bed and start moving, if possible; you should ask for physical, occupational or speech therapy, depending on your symptoms and needs
        • Step 5: stay on top of your care – pay attention to medications, treatments and tests you get throughout your stay – there is a notebook in kit
        • Step 6: follow up and provide feedback – Contact your Parkinson’s doctor and your primary care physician and give them a progress report; find out what follow-up care you will need and what things you can do at home to help control and improve your condition
      • Checklist for a planned hospital stay
      • Checklist for an emergency situation
      • Special considerations
      • If you do not have the full kit (only have the packet), be sure to print any that are relevant to you 

When should you use the kit:

  • Planned or emergency hospital stay
    • Bring it with you for every physician or consultant appointment
    • Pack and bring the kit with you when you go to the hospital
    • Ask a family member or friend to bring your packed kit to the ER
  • Annual check-up with your parkinson’s doctor
    • Bring the kit with you to every appointment
    • Exposure to the kit will help familiarize medical professionals to the kit contents and special Parkinson’s considerations
  • Traveling
    • Travel with all medications in original bottles with original labels
    • Bring twice as much medication as you’ll need
    • Keep one set of medication in your luggage and one in your aware in care kit, which should be in a carry-on bag that does not leave your sight
  • Extreme weather emergencies
    • Make sure your kit has a week of medication in original bottles and check that your medication list is up to date
    • Keep your medical alert card with you at all times and keep the kit handy in case a sudden evacuation is necessary

For more information and additional materials:

  • Parkinson.org/awareincare
  • Watch archived Aware in Care webinars
  • Download the support group discussion guide
  • Order your kit or the appropriate content
  • Actively utilize to support your best result