2025 Parkinson’s Patient Care Pulse Survey

The Michael J. Fox Foundation is seeking participants for an important community survey opportunity! Are you a U.S.-based Parkinson’s patient? We’d like to hear from you — or a care partner, caregiver or family member on a patient’s behalf — about your recent Parkinson’s care experiences.

Please take 10 minutes to respond to our Parkinson’s Patient Care Pulse Survey by May 15, 2025.

Your responses will help us understand how recent changes by the federal government have affected or could affect people living with Parkinson’s. We hope to learn as much as possible so that we can advocate most effectively for the patient community during a time of rapid change.

We may reach out for additional input in the future. Thank you for taking the time to share your experiences.

What is your primary connection to Parkinson's disease? Please select one.

Do you primarily reside in and receive Parkinson's care in the United States?

First Name

Last Name

Street address (to identify your elected officials)

City

State

What is your current living situation? (Select one)

Please specify:

Birth Month

Birth Day

Birth Year

Are you a U.S. military veteran or military service member?

What kind of care do you currently receive as it relates to your Parkinson's? Please select all that apply.

Primary CareGeneral NeurologyMovement Disorder Specialist (i.e. Neurologist with additional PD training)I do not receive care for my Parkinson'sOther (please explain)

Please explain:

In the past year, how often have you seen your Parkinson's care provider?

In the past year, how satisfied were you with your access to Parkinson's health care services?

In the past year, has the time it takes to travel to receive core Parkinson's care increased, decreased or stayed the same? Please select all that apply.

Yes, it has increased significantlyYes, it has increased moderatelyYes, it has increased mildlyYes, it has decreased significantlyYes, it has decreased moderatelyYes, it has decreased mildlyStayed the sameI'm not sure

In the past year, has your satisfaction with your Parkinson's care services changed and if so, in what way?

What has been the main reason for this change? Please select all that apply.

Gained health insuranceShorter time intervals between appointmentsMore providers availableLower costsAccess to new treatments/medications and/or specialty careOther (please explain)

Please explain:

What has been the main reason for this change? Please select all that apply.

Lost health insuranceLonger time intervals between appointmentsFewer providers availableHigher costsReduced access to necessary treatments/medications and/or specialty careOther (please explain)

Please explain:

Do you receive health care through any of the following programs? Please select all that apply.

MedicareMedicare AdvantageMedicare Part D (Medicare prescription drug plan)MedicaidPrivate Insurance/Employer based insuranceTRICAREVeteran's Health Administration (VHA)COBRAFederal Employees Health Benefits (FEHB) ProgramIndian Health Service (IHS)Other

In the past year, have you experienced any unplanned changes to your insurance coverage?

If you answered 'yes,' please explain. If you know the reason(s) your insurance coverage has changed, please include those in your explanation.

Do you receive long-term care insurance benefits?

If you answered 'yes,' have you experienced any unplanned changes in reimbursements or access to this insurance coverage in the past year? If so, please explain.

Do you receive long-term care services in a facility, your home, or the community?

If yes, please select all that apply.

Nursing home or skilled nursing facilityHome health careIndependent living and retirement communitiesAssisted livingAdult day careAdult family homesMedical foster careMemory care facilityOther

Do you receive benefits from the Social Security Administration including Social Security retirement benefits, Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI)?

If you answered 'yes,' have you experienced any unplanned changes in monthly benefit payments or reimbursements in the past year? If so, please explain.

Do you use telehealth?

If you answered 'yes,' have you experienced any unplanned changes in telehealth reimbursements or access to care in the past year If so, please explain.

Do you currently participate in Parkinson's disease clinical research studies?

If you answered 'yes,' have these studies changed in the past year? How so?

If you don't participate in Parkinson's clinical research studies now, how interested are you in participating in the future?

If you are a military veteran receiving care through the U.S. Department of Veterans Affairs (VA), have you experienced any unplanned changes to your access to care in the past 12 months?

If you answered 'yes,' please explain. If you know the reason(s) your VA care has changed, please include those in your explanation.

If you are a military veteran, do you receive care or services at a Parkinson's Disease Research, Education and Clinical Centers (PADRECCs) or affiliated program operated by the VA?

If you answered 'yes,' have you experienced any unplanned changes in reimbursements or access to care at these programs in the past 12 months? If so, please explain.

Has the price of your Parkinson's prescription medications changed in the past 12 months?

If you answered 'yes,' please explain. If you know the reason(s) for the price changes(s), please include those in your explanation.

Are there other ways your Parkinson's care has changed in the past 12 months?

If you answered 'yes,' please explain.

Does the Parkinson's patient primarily reside in and receive Parkinson's care in the United States?

Your first name

Your last name

Your email

Patient's first name

Patient's last name

Patient's email

Patient's street address

Patient's city of residence

Patient's state of residence

What is the patient's current living situation? (Select one)

Please specify:

Patient's Birth Month

Patient's Birth Day

Patient's Birth Year

Is the patient a U.S. military veteran or military service member?

What kind of care does the Parkinson's patient currently receive as it relates to their Parkinson's? Please select all that apply.

Primary CareGeneral NeurologyMovement Disorder Specialist (i.e. Neurologist with additional PD training)I do not receive care for my Parkinson'sOther (please explain)

Please explain:

In the past year, how often has the Parkinson's patient seen their Parkinson's care provider?

In the past year, how satisfied were you and/or the Parkinson's patient with their access to Parkinson's health care services?

In the past year, has the time it takes to travel to receive core Parkinson's care increased, decreased or stayed the same? Please select all that apply.

In the past year, has your and/or the Parkinson's patient's satisfaction with Parkinson's care services changed and if so, in what way?

What has been the main reason for this change? Please select all that apply.

Gained health insuranceShorter time intervals between appointmentsMore providers availableLower costsAccess to new treatments/medicationsOther (please explain)

Please explain:

What has been the main reason for this change? Please select all that apply.

Lost health insuranceLonger time intervals between appointmentsFewer providers availableHigher costsReduced access to necessary treatments/medicationsOther (please explain)

Please explain:

How has this change affected the Parkinson's patient's ability to get the care they need?

Does the Parkinson's patient receive health care through any of the following programs? Please select all that apply.

In the past year, has the Parkinson's patient experienced any unplanned changes with their insurance coverage?

If you answered 'yes,' please explain. If you know the reason(s) the patient's insurance coverage has changed, please include those in your explanation.

Does the Parkinson's patient receive long-term care insurance benefits?

If you answered 'yes,' has the patient experienced any unplanned changes in reimbursements or access to this insurance coverage in the past year? If so, please explain.

Does the Parkinson's patient receive long-term care services in a facility, at home or in the community?

If yes, please select all that apply.

Nursing home or skilled nursing facilityHome health careIndependent living and retirement communitiesAssisted livingAdult day careAdult family homesMedical foster careMemory care facilityOther

Does the Parkinson's patient receive benefits from the Social Security Administration including Social Security retirement benefits, Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI)?

If you answered 'yes,' has the patient experienced any unplanned changes in monthly benefit payments or reimbursements in the past year? If so, please explain.

Does the Parkinson's patient use telehealth?

If you answered 'yes,' has the patient experienced any unplanned changes in telehealth reimbursements or access to care in the past year? If so, please explain.

Do you and/or the Parkinson's patient currently participate in Parkinson's disease clinical research studies?

If you answered 'yes,' have these studies changed in any way in the past year?

If you or the patient do not participate in Parkinson's clinical research studies, how interested are either of you in participating in the future?

If the Parkinson's patient is a military veteran receiving care through the U.S. Department of Veterans Affairs (VA), have they experienced any unplanned changes to their access to care in the past year?

If you answered 'yes,' please explain. If you know the reason(s) their VA care has changed, please include those in your explanation.

If the Parkinson's patient is a military veteran, do they receive care or services at a Parkinson's Disease Research, Education and Clinical Centers (PADRECCs) or affiliated program operated by the VA?

If you answered 'yes,' has the patient experienced any unplanned changes in reimbursements or access to care at these programs in the past year? If so, please explain.

Has the price of the patient's Parkinson's prescription medications changed in the past year?

If you answered 'yes,' please explain. If you know the reason(s) for the price change(s), please include those in your explanation.

Have you experienced any unplanned changes in programs that provide resources or financial assistance to caregivers or care partners in the past year(including but not limited to respite care, Medicaid reimbursement, paid family leave, local agencies on aging programs, veterans' programs and long-term care insurance policies)?

If you answered 'yes,' please explain. If you know the reason(s) for the changes to these programs, please include those in your explanation.

Are there other ways the patient's Parkinson's care has changed in the past year?

If you answered 'yes,' please explain.

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