2020 COVID-19 Patient & Caregiver Survey Report

2020 COVID-19 Patient & Caregiver Survey Report Response Rate: 20% (799/3,950)

2020 COVID-19 Patient & Caregiver Survey Report | Carolyn Cahill © 2020 American Academy of Neurology. All rights reserved

October 2, 2020 | Page 2

2020 COVID-19 Patient &

Caregiver Survey Report

October 2, 2020 Prepared by Carolyn Cahill, Senior Research Analyst

Background .......................................................................................................... 3

Research Goals ............................................................................................... 3

Methods ......................................................................................................... 3

Key Findings ......................................................................................................... 4

Frequencies .......................................................................................................... 8

Comments ......................................................................................................... 13

Question Guide ................................................................................................... 45




BACKGROUND

Research Goals

While reviewing results from the May COVID-19 member popup survey, the Member Research

Subcommittee (MRS) decided it would be beneficial for the AAN to understand how the pandemic is

affecting neurology patients and their caregivers. Specifically, they want to know how patients feel about

telehealth visits, if the pandemic has affected their relationship with their provider and the pandemic’s

effect on patient lives in general.

Survey research objective: Understand how the COVID-19 pandemic is affecting neurology patients and

caregivers.

Business decisions and use of the results: Inform telehealth advocacy and regulatory initiatives

(Advocacy Committee), help members understand how patients are affected (Member Research

Subcommittee, possibly Medical Economics and Practice Committee). Since the sample will be drawn

from Brain & Life® subscribers, share results with Brain & Life Editor-in-Chief and staff.

Methods

Instrument: Questions were developed by Jason Sico, MD, and Carolyn Cahill, AAN Senior Research

Analyst. The instrument was reviewed by Andrea Weiss, Executive Editor, Education and News

Publications; Amanda Becker, Senior Director, Policy and Practice Innovation; Amy Kaloides, Senior

Director, Advocacy; the AAN Insights team; and the MRS.

Population: The AAN data team obtained a list of Brain & Life print subscribers from Wolters Kluwer on

July 27, 2020. The list contained 66,236 self-identified caregivers and 6,226 self-identified patients. A

random sample of 2,000 caregivers and 2,000 patients was pulled from the list to create the population.

Data Collection: The survey was conducted entirely online July-August 2020. The survey was emailed to

the population on Thursday, July 30, with reminder emails sent on Wednesday, August 5, and Tuesday,

August 11. The emailed letter was signed by the Chair of the MRS, Benn E. Smith, MD, FAAN.

Participants were asked to complete the survey by Friday, August 14. The survey was closed on Monday,

August 17. During data collection, one participant requested a PDF version of the instrument, and 3

participants were unable to access their unique links. Of the 4,000 individuals sent the survey, 91

individuals opted out of the survey and there were 50 failed or bounced emails according to the online

survey vendor (Qualtrics).

Response Rate: The response rate was 20% (799/3,950), with a margin of error of +/- 3.5%.

Analysis: Basic descriptive and summary statistics were conducted using SPSS version 26 and are

included in the frequencies section. All open-ended comments are listed alphabetically beginning on page

13. Write-in responses were coded and grouped by theme in QSR NVivo version 11; comment summaries

are included within the frequencies section.




KEY FINDINGS

Demographics

Over half of respondents (56%) described

themselves as a person with a neurologic

condition and many shared their specific

conditions in the write-in comments. Almost a

third (32%) identified themselves as caregivers.

Several write-in comments mentioned being a

former caregiver, which was not a response

option. Another one-fourth described themselves

as interested in neurology (24%).

Respondents were

generally evenly

distributed across

the four regions of

the United States,

with the largest

proportion currently

residing in the South

(38%), followed by

the West (22%) and

Midwest (22%) and

just under one-fifth

(18%) live in the

Northeast. These

proportions closely

resemble the US

population.

Respondents also tended to be white, older and women. Almost three-fourths (74%) were over the age of

60, and almost none were 30-years-old or younger. Three-fourths (75%) were women; none identified as

transgender or a gender other than a man or woman. Most (92%) identified as white, non-Hispanic.




Neurology Telehealth

Only 3% of respondents attended a neurology

telehealth visit prior to the COVID-19

pandemic, whereas one-fifth (20%) attended

one during the pandemic. Among those

attending neurology telehealth visits, most

visits were for ongoing/follow-up care (93%),

followed by a consultation/new health concern

(16%). Satisfaction was slightly higher for

ongoing/follow-up care (92%) than

consultations/new health concerns (88%).

When asked to select up

to 3 aspects they liked

most about the neurology

telehealth visit, not

needing to travel (80%),

decreased risk of exposure

to COVID-19 (73%) and

reduced wait times to meet

with the provider (43%)

were the top reasons.

Write-in responses for

‘other’ included

appreciation for increased

safety, fewer concerns

about falling and not

having to wear a mask.

When asked what they liked least about

their neurology telehealth visit, ‘other’ was

the most frequently selected response

option (49%), followed by decreased

quality of care (35%) and technology

issues disrupting the appointment (26%).

Many of the ‘other’ write-in comments

indicated no issues with their neurology

telehealth appointment. Some of the top

concerns among write-in responses were

providers not being able to conduct

hands-on physical or neurologic exams,

difficulty observing symptoms and a

general desire for an in-person

experience.




Access to Neurology Care

For about one-fifth (19%) of respondents,

seeking access to neurology care was

not applicable. Among those who do

seek neurology care, almost two-thirds

(65%) have experienced no changes due

to the COVID-19 pandemic. Those who

have been affected have had follow-up

visits postponed, either by themselves

(15%) or their established provider

(11%), have postponed seeing a new

provider (10%), or chose not to seek

emergency care (5%). Write-in

comments mentioned avoiding or postponing visits due to concerns about COVID-19, not being able to

get testing done, changes to treatment, in-person appointments moving to telehealth and caregivers not

being able to accompany them.

Relationship with Neurology Provider

About two-thirds of respondents (76%) indicated that

they or a family member had an established neurology

provider prior to the COVID-19 pandemic. For those

with established neurology providers, the relationship

with the provider has stayed the same for most (87%).

When asked to comment on how the pandemic has

affected their relationship with their neurology provider,

most indicated that the relationship has not changed or

that they have not needed to see their provider. For

those who have seen their provider, many have had

successful telehealth or in-person appointments. For

some, their providers have retired or been

furloughed. Others have cancelled or postponed

visits, preferring in-person interactions or citing

concerns about COVID-19.

Effect of COVID-19 Pandemic

When asked how the COVID-19 pandemic has affected them personally, the most frequent responses

were limited social interactions (81%), feeling isolated (43%), feeling anxious (42%) and connecting more

via technology (39%). Write-in comments for ‘other’ reflected the closed-ended response options with

respondents elaborating on why they feel isolated/anxious, how they’ve been connecting more via

technology and how limited social interactions have impacted them.




Respondents were given the opportunity to share open-ended comments about how the COVID-19

pandemic has affected them or their family. The most common theme was isolation from family and/or

friends. Many described this isolation as lowering their quality of life and contributing to a variety of health

concerns (e.g., anxiety, depression, stress, cognitive

decline, onset of new symptoms and exacerbation of

existing symptoms); although for some, isolation was

considered a positive. Another prominent theme was

concern, either generally or specifically about contracting

COVID-19; confusing messaging from the media and

government officials added to this concern.

Conclusion

Social isolation due to the pandemic is a major cause of

concern for many individuals responding to this survey.

Those who have experienced neurology telehealth visits

are generally satisfied with them; they appreciate not

having to travel to appointments or risk exposure to

COVID-19. The AAN should continue advocating for

neurology telehealth visits while realizing that not all

encounters and not all patients are suited to this mode of

care delivery.




FREQUENCIES

1. Have you ever attended a neurology telehealth visit? Mark all that apply.1 This survey defines a

telehealth visit as two-way, real-time interactive electronic communication between a

patient/caregiver and a health care provider using audio or visual equipment. n Percent

Yes, before the COVID-19 pandemic 22 3%

Yes, during the COVID-19 pandemic 156 20%

No2 622 79%

TOTAL 789 >100% 1Total exceeds 100% due to respondents selecting more than one option. 2Exclusive response option; skipped to Q7.

2. What type(s) of neurology telehealth visit(s) have you attended? Mark all that apply.1 n Percent

Ongoing/follow-up care 149 93%

Consultation/new health concern 25 16%

Emergency department care 5 3%

Care while hospitalized 3 2%

TOTAL 161 >100% 1Total exceeds 100% due to respondents selecting more than one option.

3. How would you rate your overall satisfaction/dissatisfaction with the following neurology

telehealth visit(s)?1 n Very satisfied Satisfied Dissatisfied Very dissatisfied

Ongoing/follow-up care 149 47% 45% 6% 2%

Consultation/new health concern 25 52% 36% 12% 0%

Emergency department care 4 0% 100% 0% 0%

Care while hospitalized 2 0% 100% 0% 0% 1Only those who selected a response in Q2 were displayed the question and appropriate response options.

4. Thinking about your most recent neurology telehealth visit, please select up to 3 aspects that

you liked most about the experience:1,2 n Percent

No need to travel 129 80%

Decreased risk of exposure to COVID-19 119 73%

At the time of the visit, reduced/no wait to meet with provider 70 43%

Easy to schedule appointment 29 18%

Use of telehealth technology 28 17%

Improved communication with provider 20 12%

Appointment times fit more into my schedule 19 12%

More time for questions 16 10%

Other (please specify):3 7 4%

Increased quality of care 6 4%

TOTAL 162 >100%

1Respondents were able to select between 0 and 3 options; total exceeds 100% due to respondents selecting more than one option. 2Response options were presented randomly. 3Comments begin on page 13.

Q4 ‘Other’ (n=7): Respondents appreciated increased safety, fewer concerns about falling and not having

to wear a mask.





you liked least about the experience:1,2

n Percent


Decreased quality of care 48 35%

Technology issues disrupted appointment 35 26%

Difficult to communicate with provider 24 18%

Less time for questions 17 13%

Provider found it difficult to communicate with me/us 13 10%

Concerns about confidentiality 10 7%

Unable to find privacy for the appointment 7 5%

Longer wait time to meet my provider 5 4%

Difficult to schedule appointment 4 3%

Appointment times did not fit into my schedule 0 0%

TOTAL 136 >100% 1Respondents were able to select between 0 and 3 options; total exceeds 100% due to respondents selecting more than one option. 2Response options were presented randomly. 3Comments begin on page 13.

Q5 ‘Other’ (n=56): Many of the write-in comments indicated no issues with the telehealth appointment.

For those with issues, respondents mentioned that providers were unable to conduct hands-on physical or

neurologic exams, difficulty observing certain symptoms such as gait and balance, general desire for an

in-person experience, inability to collect bloodwork or perform certain tests, and specific communication

challenges (e.g., virtual is impersonal, certain topics are not suitable for telehealth).

6. Has the COVID-19 pandemic affected whether you or your family seek access to neurology

care? Mark all that apply.1 n Percent

Not applicable2 145 19%

TOTAL of those answering the question 760 100%

No changes2 398 65%

Yes, I postponed follow-up visits 95 15%

Yes, an established provider postponed follow-up visits 69 11%

Yes, other (please describe):3 49 8%

Yes, I postponed seeing a new provider 37 6%

Yes, I did not seek care in an Emergency department 29 5%

Yes, a new provider postponed initial visit 26 4%

Yes, I chose not to be hospitalized when a healthcare provider advised for admission 2 0%

Yes, I lost health insurance coverage 2 0%

TOTAL of those affected 615 >100% 1Total exceeds 100% due to respondents selecting more than one option. 2Exclusive response option. 3Comments begin on page 13.

Q6 ‘Yes, other’ (n=49): Comments mentioned avoiding or postponing visits due to concerns about

COVID-19, inability to get bloodwork or tests, changes to treatment (e.g., no Botox injections), in-person

appointments moving to telehealth (video and phone calls), and caregivers being excluded from

appointments.




7. Did you or a family member have an established neurology provider prior to the COVID-19

pandemic? n Percent

Yes 575 76%

No 182 24%

TOTAL 757 100%

8. How has the COVID-19 pandemic affected your relationship with your established neurology

provider? n Percent

Improved 17 3%

Stayed the same 478 87%

Worsened 56 10%

TOTAL 551 >100% 1Only to those who said ‘Yes’ in Q7 were displayed this question.

9. If you would like to comment on how the pandemic has affected your relationship with your

established neurology provider, please share here (n=121): Most respondents mentioned that the

relationship with their current neurology provider has not changed. Several patients have not needed to be

seen or they have had successful telehealth visits/in-person appointments with precautions in place. For

those who indicated that their relationship has changed, they cited providers retiring or being furloughed,

cancelling or postponing appointments, preferring in-person appointments, avoiding appointments due to

health concerns and changes to treatment and testing due to the pandemic.

10. How has the COVD-19 pandemic affected you, personally? Mark all that apply.1,2 n Percent

Limited social interactions 577 81%

Feeling isolated 308 43%

Feeling anxious 300 42%

Connecting more via technology 275 39%

Feeling depressed 227 32%

Have more time with immediate family 207 29%

Increased time to engage in personal interests 190 27%

Increased financial concerns 154 22%

Limited or no access to therapies I was previously receiving 130 18%

Family member, friend, or loved one contracted COVID-19 102 14%


Existing symptoms have worsened 82 12%

Lost work 59 8%

Increased work 36 5%

Contracted COVID-19 15 2%

Increased access to new therapies 11 2%

TOTAL 711 >100% 1Total exceeds 100% due to respondents selecting more than one option. 2Response options were presented randomly. 3Comments begin on page 13.

Q10 ‘Other’ (n=101): Comments tended to reflect the closed-ended response options, with most sharing

concerns about feelings of isolation, anxiety and an inability to visit with family and friends in-person.




Several comments mentioned behavioral changes, such as spending more time outdoors, eating at home,

less exercise due to gyms being closed; impacts to health or finances, which were generally negative;

increased virtual experiences such as working from home, education, or telehealth visits; changes to

caregiving by not being able to visit loved ones in long-term care facilities or increased caregiving

responsibilities; finding ways to be positive; and turning to religion. A few respondents mentioned that they

have not been affected by the pandemic.

11. What would you like neurology providers to know about how the COVID-19 pandemic has

affected you or your family? (n=404): The most common theme was isolation from family and/or friends.

Many described this isolation as lowering their quality of life and contributing to a variety of health

concerns (e.g., anxiety, depression, stress, cognitive decline, onset of new symptoms and exacerbation of

existing symptoms); although for some, isolation was considered a positive. Another prominent theme was

concern, either generally or specifically about contracting COVID-19; confusing messaging from the media

and government officials added to this concern. Respondents mentioned various behavioral changes due

to the pandemic (e.g., spending more time outside, watching more TV, no traveling, increased virtual

interactions, following social-distancing guidelines/masking rules, etc.), although some reported little to no

change in their lives. A couple dozen comments even mentioned positive consequences of the pandemic.

Several caregivers described not being able to visit their loved ones in facilities and taking on additional

caregiving responsibilities. Other themes included specific comments about providers, religion, the political

landscape, opposition to pandemic precautions (e.g., stay-at-home orders, masks, shutdowns), gratitude

towards neurology providers and Brain & Life magazine, economic concerns and loved ones dying.

12. How would you describe yourself? Mark all that apply.1 n Percent

Person with a neurologic condition 397 56%

Caregiver to an individual with a neurologic condition 228 32%

Interested in neurology 171 24%

Other (please describe):2 91 13%

TOTAL 712 >100% 1Total exceeds 100% due to respondents selecting more than one option. 2Comments begin on page 13.

Q12 ‘Other’ (n=91): Most respondents listed their own neurologic condition or described a family member

with a neurologic condition. Other themes with multiple comments included being a former or current

caregiver, a health care provider (e.g., nurse, therapist), and a non-health care professional.

13. Where do you currently live? n Percent

US South (AL, AR, DC, DE, FL, GA, KY, LA, MD, MS, NC, OK, SC, TN, TX, VA, WV) 273 38%

US Midwest (IA, IL, IN, KS, MI, MN, MO, ND, NE, OH, SD, WI) 160 22%

US West (AK, AZ, CA, CO, HI, ID, MT, NM, NV, OR, UT, WA, WY) 156 22%

US Northeast (CT, MA, ME, NH, NJ, NY, PA, RI, VT) 126 18%

TOTAL 715 100%




14. What is your age range? n Percent

Under 18 2 0%

18-20 0 0%

21-30 2 0%

31-40 11 2%

41-50 60 8%

51-60 113 16%

61-70 216 30%

Over 70 years 313 44%

TOTAL 717 100%

15. What is your gender? n Percent

Prefer not to answer 4 1%

TOTAL 718 100%

Woman 538 75%

Man 176 25%

Transgender 0 0%

A gender not listed here 0 0%

TOTAL of those who answered 714 100%

16. What is your race/ethnicity? Mark all that apply.1 n Percent

Prefer not to answer2 30 4%

TOTAL 716 100%

White 630 92%

Hispanic or Latino 27 4%

Black or African American 20 3%


Asian 8 1%

American Indian or Alaskan Native 6 1%

Native Hawaiian or Other Pacific Islander 1 0%

TOTAL of those who answered 686 >100% 1Total exceeds 100% due to respondents selecting more than one option. 2Exclusive response option. 3Comments begin on page 13.

Q16 ‘Other’ (n=12): Comments tended to reflect specific European ancestry (e.g., German, Norwegian,

Anglo, etc.) or listed more than one option.

17. Just prior to the COVID-19 pandemic, what was your annual income? n Percent

Prefer not to answer 203 28%

TOTAL 714 100%

Less than $15k 46 9%

$15-$50k 166 32%

$51-$100k 198 39%

More than $100k 83 16%

Unemployed 18 4%

TOTAL of those who answered 511 100%




COMMENTS

For each survey question with an open-ended response option, comments written by respondents are

displayed below. Comments are alphabetized and lightly edited for grammar, spelling and punctuation.


you liked most about the experience: Other (please specify):

• Diagnosis for stroke.

• Didn't have to wear a mask.

• I don't like telehealth appts and feel the quality of care has been reduced. I've had 4 different

telehealth calls. I didn't like any of them.

• It did not do tele health.

• My doctor preferred if it was possible.

• No copay.

• Safer and less stressful, decreased concern of falling, fatigue, lowers heat intolerance issues.


you liked least about the experience: Other (please specify):

• None. (6)

• No problems. (2)

• Bloodwork cannot be drawn/processed.

• Did not do tele health.

• Did not have any issues. Doctor was very thorough.

• Difficult for doctor to observe symptoms.

• Difficult to evaluate gait and balance.

• Doctor's lack of visual assessment.

• Everything was just fine for us no problem.

• Full Neuro exam not possible.

• Great visit. No problems.

• Hands in.

• I am very fortunate I have a wonderful neurologist, I have no complaints.

• I felt my husband needed to see his doctor, but had to discuss problem with nurse and she talked

with doctor and got back with me. I wanted to talk with the doctor because of the seriousness of

his problem.

• I had no complaints.

• I had none of the issues listed above.

• I have a fairly new diagnosis and it was difficult to have a phone visit only.

• I just prefer in person appointments and in terms of evaluating my gait, strength & coordination

don’t think view from the cell phone are enough.

• I was completely satisfied.

• I wasn't able to get a physical assessment of my balance and the 25 feet walking test.

• Inability to have provider “see” physical manifestations of symptoms.

• Internet cost.




• My lack of knowledge about how and when to connect with my provider.

• My provider said she would prefer not to provide care via telehealth, although I strongly prefer it.

• My quiet speech was a little problem.

• No concerns at all.

• No difficulties.

• No dislikes.

• No negative aspects.

• No problems I am having office visits with a great neurologist I will see on August 24th a wonderful

doctor like the old days and he is a young man, I am a retired anesthetists knows a what I am

talking about this a new fine doctor!

• None of the above.

• None. We were happy.

• Not a good personal connection with a new provider.

• Not as good as face to face.

• Not sure if providers could observe all symptoms.

• Not sure received full physical workup with virtual visit vs personal.

• Nothing.

• Provider seemed hurried.

• Seemed impersonal.

• Some neurological test could not be performed but I bet this could be improved.

• Some things need to be done in person to get a better assessment.

• Still believe in hands on care, that observation in person is more comprehensive than over video.

Assessing patient color, affect, any difference in balance, any slight tremor..etc.

• Still have not been scheduled for CT scan requested by neurologist despite several follow up calls

to office.

• Telehealth very perfunctory.

• There were no 3 aspects.

• There were no issues.

• Trouble discussing/addressing surgery need.

• Visual assessment by physician a bit trickier and perhaps not as precise.

• Wanted doctor to see me in person for first appointment.

• Wasn't as personable, but nothing during COVID-19 has been.

6. Has the COVID-19 pandemic affected whether you or your family seek access to neurology

care? Yes, other (please describe):

• Afraid to go out of my home.

• After fall, seen at an urgent care facility.

• Cancel Botox injection visit.

• Cannot get Botox during shutdown.

• Delaying a non-critical MRI.

• Difficult to get appt for new.

• Doctor refused my caregiver to attend my follow up visit 2 weeks after craniotomy for shunt without

warning citing virus concerns. My caregiver had always accompanied me previously. Big mess!




• Doctor postponed my appointment.

• Due to increased SOB I went to the ER. Was not admitted due to COVID-19 and 'you do not need

a ventilator now'.

• Established provider scheduled next visit as virtual visit.

• Family member postponed follow-up.

• Had to schedule a phone call rather than a regular appt.

• Harder to get MRI test.

• Have Fuchs Distrophy, soon a TCU.

• Have refused to seek treatment from anyone.

• Husband did telehealth. Rather in person. I was seen in person.

• Husband had a doctor visit by phone instead of going to the office.

• Husband with Alzheimer’s lost his day care program.

• I did not make an appointment due to the COVID-19 epidemic.

• I gave up my 6-month visit to someone who needed it more than me.

• I go into the hospital every 60 days and I just didn’t feel good about going into the hospital.

• I had to have a teleconference with neurologist.

• I have not found a new Rolla just that has been able to offer help.

• I postponed a UCSF neurological study visit indefinitely.

• I postponed a visit.

• I see few doctors while COVID-19 is a risk.

• I was refused a chest X-ray when the pneumonia was severe.

• Just have avoided medical facilities.

• My husband needed to have a telehealth appointment instead of face to face.

• My husband, an Alzheimer’s patient, had a televisit with his neurologist.

• My MRI was postponed.

• My ocrevus infusion had to be rescheduled because I was sick and had been tested for COVID-

19.

• My PCP was inundated with work so I sought medical care from an ordinary ER doctor.

• My spouse did not see Neurologist and Cardiologist.

• Neurological doesn’t wish to do more than telephone calls not even video chat.

• Partner not allowed to join.

• Postpone battery change for DBS.

• Postponed bloodwork.

• Postponed scheduling an appt.

• Talked to the doctor on FaceTime.

• Telemedicine PT for neurological problem instead of in person PT.

• Under hospice care.

• Video follow-up.

• Virtual neurological visit instead of in person.

• We postponed a new provider visit to get a baseline for my husband as far as Parkinson's disease

concerns from his primary.

• We use telehealth for everything. Not risking an in-person apt. Not likely to seek medical unless an

emergency.

• When COVID-19 was newly announced some appointments were canceled and then reset for

online visits.




• Yes. However, I used telephone contact with my doctor for one visit that is usually just questions.

All went well; no complaints.

9. If you would like to comment on how the pandemic has affected your relationship with your

established neurology provider, please share here:

• A face to face visit would be preferable for my husband’s neurology follow up but not worth the risk

of exposure to COVID-19.

• All good.

• Appointments harder to come by.

• As I only see her once a year in February, there hasn't been a problem so far.

• As mentioned previously, my provider prefers not to provide care via telehealth. She did not

attempt any form of physical assessment such as she usually does in person by having me walk

or touch finger to thumb, etc, even though she could have done these via the remote platform. I

feel her resistance to the technology does me a disservice as a patient. In order for me to go to an

appointment with her in person, I have to get a ride with a volunteer from a local organization.

Some of the volunteers are very poor drivers and my life is in their hands. I have no say over who

drives me. I also have to travel a long distance to get there, so a doctor’s appointment will require

3-4 hours of my day. If more neurologists would use telehealth and maximize its potential as a tool

for providing care, I think it could benefit patients & providers both.

• At this point in time, the relationship has stayed the same. I am due for a more thorough follow-up

exam in September that at this point is supposed to be an in-person appointment. However, the

virus is spiking in our area and the appointment may become a video or phone appointment. This

concerns me because my condition has worsened and I don't know how my doctor can see or

properly diagnose my condition by video or phone. So, at this point, only time will tell. We are

traveling in uncharted territory. I do trust my doctor completely and I'm sure he will find a way to

handle these changes in doctor/patient relationships.

• Battery change for DBS was considered non-essential.

• Being confined to a wheelchair and unable to walk my husband’s mobility greatly diminished from

being quarantined. His neurologist does not do virtual appointments and he was unable to exit the

car due to his mobility and could not get into office to see doctor. Have now solved problem by

having him transported by a wheelchair accessible van.

• Both my son and my husband have established neurology providers and we are very happy with

both of them.

• Continued good communication and much easier than 3-hr drive each way to his office.

• Currently do not have a Neurologist.

• Depressed so talking to psych and therapist for now. Neuro says my brain is stable but can get

worse.

• Does not allow for physical check-ups and tests.

• Dr. Dubey is caring and thorough.

• Dr. Sabau always congenial and stated we should not hesitate to contact him if needed.

• Dramatically shortened time with the provider.

• Easier to have telehealth visit due to 30 min drive to office.

• Emails replace face to face sessions.




• Even before COVID-19 was considering finding a neurologist closer to home and because there

doesn’t seem to be much help a neurologist can provide for Lewy Body Disease.

• Face to face in person visits provide both sides to observe issues.

• Fear of COVID-19 has caused me to live elsewhere but have the magazine mailed so I can

continue reading the issues.

• Feel a visual visit still important for doctor to see changes that patient may not recognize or admit.

• Had tele visits which are ok but not the same intimacy.

• Had to reschedule my appointment, plus the following visit is 6 weeks away.

• Has not changed.

• Have not contacted him since the pandemic started. Wearing masks when we walk, shop, etc.

Staying at peace through prayer. Visited him last in March right before the pandemic.

• Have not needed to see my neurologist during the pandemic.

• He has been very compassionate.

• He has Webinars to inform us on Parkinson’s issues.

• He was very open to tele-health. The appointment went well and we will do it again in the future as

needed.

• However, the ever-wonderful Dr. King-Stephens has left for greener pastures and I will be seeing

another doctor in the same practice. Please remind your doctors that many of their older patients

are not computer savvy and have no one at home to teach them. This could become a problem.

Thank you for all you do.

• Husband had scheduled follow up visit, it went well. Lahey Burlington, Burlington, MA, all rules

followed.

• Husband reluctant to go.

• I am not the MS patient. It is my son who lives separately with his wife.

• I am receiving concerned phone calls from those who work with our neurologist at UCSF. As a

caretaker I continue to have access to a support group through ZOOM.

• I call if I need anything.

• I cannot confirm why my neurologist is leaving the hospital she is associated with, but she has left

the practice, so I will need to find a new neurologist, in the middle of the COVID-19 pandemic.

• I couldn't get the FaceTime to work and had to talk about personal stuff over the phone and that

can't help me on the phone and they charge me for that.

• I did have one video appointment with my neurologist, which was fine.

• I do not go because he now is requiring you to pay for visits for a year.

• I had a health issue but because of the pandemic I was unable to get in to see the doctor.

• I had only seen my neurologist one time in person before COVID-19. I really liked her and looked

forward to working with her in the future. (I still do). I felt that it was difficult to continue developing a

new relationship without it being face-to-face.

• I have a doctor visit once a year and don't know yet how/if will be affected as it should be in the

Fall.

• I have avoided making a new appointment.

• I have not been in contact to make an appointment with my neurology provider since the pandemic

started. I would have seen him as a follow up visit. I have had no new problems.

• I have taken the pandemic as a challenge, to watch for the good things to come from it in the

future.🌲

• I haven’t been to follow up appointments.




• I just have checkup visits and restrictions had eased by the time of my regular appointment so it

was not affected. Same good relationship.

• I postponed follow-up visits because the risk of exposure due to out of state travel to my provider.

No telemedicine visits were available because the requirements imposed by my state on

telemedicine across state lines, although my out of state provider used telemedicine within his

home state.

• I see a neurologist in a neighboring city. I will see him in December, hopefully.

• I stopped going to my doctor’s.

• I usually see nurse practitioner and haven't seen her in almost 6 months. I only talked to her once.

• I value the ease of using teleheath for my appointments with one of my MS doctors following up is

supported and keeps care checking in on schedule.

• I was aware of other specialist not seeing patients in the office but only received notice when mine

was again seeing patients, however they are not allowing family members to enter the building

much less go back with the patient. I have MS and my husband essential tremors and normally

accompany the other to appointments to help remember Dr's instructions since it is not put in

writing.

• I was tested before seeing my Dr. and was negative and kept my appointment.

• I was unable to get a refill on badly needed medication when I was feeling sick. Now I need to find

a new provider.

• I was unable to see my neurologist back in May my symptoms worsened since then.

• I would prefer to find a closer medical Doctor one with more Multiple Sclerosis familiarity.

• If we would have emergency situation (thank GOD we didn’t) I think it would have been very

difficult situation- going to emergency and etc.

• In clinic visits tend to be more focused, productive and time allotment is longer due to not having

connecting issues or waiting to start online session. Online sessions seem more forced. But its

great not having to wear a mask.

• Instead of an appointment at the neurologist office, the visit was through teleconference via Zoom.

• Instead of office visit, had virtual visit.

• It has not impacted my relationship at all as I have had no need for an appointment other than my

regularly scheduled 6-month appointment, which I gave up. I have an appointment in 2 months.

• It was a great way to have an appointment with my provider. We have a long-standing

relationship, my migraines are well controlled, and he is very tech savvy to do visits like this!

• Lack of communication and assistance.

• Lost my husband May 16th recently lost my brother in law.....daughter having radiation

treatments....miss my family.

• Minimal contact before, none since.

• My appointment isn’t until the end of August so at this point the relationship has not been affected.

• My care partner died before the pandemic began.

• My daughter has MS & does not live with me. Therefore, there are questions I cannot answer.

• My established neurologist retired and I needed to find a new one.

• My husband died prior to COVID-19 but I continue to support others.

• My husband needs to see a neurologist but we are delayed by COVID-19. We are working on

getting him an appt.

• My life partner passed away from Parkinson's disease. I no longer have contact with his

physicians. But my interest in the field of neurology continues.




• My mother was just beginning her relationship with her neuropsychologist when COVID-19 closed

down everything.

• My movement disorder specialist, (I have Parkinson’s), has his office on the campus of Sinai

Hospital in Baltimore, MD. The place was like a ghost town when I had my appointment in May.

He had one “virtual appointment” prior to my appointment, and I’m assuming none after mine. He

spent 1.5 hours with me! It was incredible!

• My nephew was diagnosed 6 years ago with ALS at age 24. He has an ongoing relationship with

several providers and this has remained unchanged during the pandemic.

• My neurologist announced in July she will be departing the practice as of August 31, 2020. I can

only guess that the pandemic contributed to her decision.

• My neurologist stopped all visits by phone, email and in person for 3 months.

• My neurologist, was let go my Mercy Hospital during COVID-19. I will be seeing her for the first

time, on 8/19/20.

• My only complaints is my husband can't go with me to the visit and I don't recall everything that is

discussed at my visit because of short-term memory issues. Only the patient is allowed to go into

the office and my husband has to wait in the car. I have a great neurologist and our plan is usually

short and brief, but I wish I could have my support with me.

• My sister is no longer living......so this will not apply to me. Thank you though.

• My spouse stopped Parkinson med before Pandemic and visit was cancelled during and spouse

probably not going back to Neurologist.

• My wife had Parkinson’s but she died January 31, 2020 before the COVID-19 crisis.

• My wife was patient and she is deceased.

• N/A.

• No change, my health hasn’t deteriorated. My health remains about the same.

• No change.

• No change. We have not needed to be seen.

• No changes.

• No comment.

• No contact. Husband who had neurology provider died.

• No office visits.

• Not sure. Scamdemic has made me suspicious of all medical providers and I realize medical

personnel are not able to disagree with the prevailing politically correct take on the virus. (lest they

be mocked and ridiculed). Not sure how my medical provider really feels about the scamdemic. I

do know the numbers and risk are inflated for political reasons and I am dismayed that the medical

community is not speaking out about it.

• One of the follow up sessions was by telephone.

• Our health is compromised with Rheumatoid arthritis and emphysema.

• Our provider postponed the appointment because of the pandemic.

• Reduction in the amount of stress.

• Relationship was already very good. Increased empathy for my MD and her family going through

Pandemic.

• Same high-quality care.

• Spouse had neurology appt. 2nd week of March, took precautions but kept appt.

• Support groups facilitated by neurologists practice have gone online. Although it provides a

connection to the office, it is not a satisfactory substitute.




• The Governor mandated that routine tests (like MRIs, in my daughter's case) were halted in

March. We needed that MRI to see if she had any brain issues. We had to wait until JUNE to get

the test (and we got June 3 only because I insisted and happened to get a scheduler on the phone

who listened to my concerns and was able to track down the doctor who then coded my daughter

as an urgent case- so we could get the test earlier than what the Governor mandated as routine

tests- which would not start scheduling until July). We had the MRI done on June 3 and it was

found that she had a brain tumor which required immediate surgery!

• The neurology doctor was not helpful prior to COVID-19 and still is not because the progress with

memory issues has not improved. There are no effective treatments or meds.

• The only difference is the mask protocol and questionnaire if I have fever; been around anyone

who has tested positive for COVID-19 and if I have traveled out of state.

• The only real change is my provider gave me samples to last longer to keep me from having to

return to the office environment due to my immunity issue. My lack of affordability of Emgality

leaves me using samples for now so he gave me enough between appts to protect me from

coming back into a people-oriented environment until our next appointment.

• The telephone doctor appointments I did not like. Would rather have done an in-person visit.

• They canceled an in-person appointment in April. Couldn’t get another one until January. Been

going every 6 months. Not happy that they didn’t take care of cancellation better.

• This year the appointment was by teleconference.

• Travel not possible now.

• Use common sense.

• Very much like telehealth, would like to continue unless we experience health complications.

• We chose not to seek additional treatment until after the executive order to stay home and to

protect our mother who is the patient receiving the treatment.

• We have a medically complex child and being able to see his provider via telehealth has been very

helpful for us. It protects him from exposure to the virus at the practitioner's office.

• We haven't seen a neurologist during the COVID-19 time period (nor a need to).

• We will not do an in-person apt. Our whole family has underlying medical and my parents are over

65.

• When you don’t see them face to face, you feel they don’t see full picture.

• While short staffed & over-worked, my epileptologist went above and beyond to coordinate surgery

& provide continuous care, during this time of insurmountable stress on our healthcare system.

• Will not go to any doctor at all, nor any buildings with doctor's offices.

10. How has the COVD-19 pandemic affected you, personally? Other (please specify):

• N/A. (2)

• A family member has died from COVID-19.

• ADC support closed.

• Additional requirements for basic life, lack of access to goods.

• Afraid to return to gym. Not going out as much therefore sitting around more.

• All travel put on hold, how much longer will we have to travel?

• Am a widow, and have been isolated since March 7.

• Anger with government and complete illogic of shutdown and restrictions.

• Annoyed by over-restrictive measures.




• Anxiety over the condition of this country, financial, social, rights & privileges being stripped away,

potential effects on the upcoming elections & much more.

• As the primary caregiver for both my son and my husband I have more to do as I’ve had to give up

the income caregiver I had 3 mornings a week prior to the pandemic. Both my husband and son

seem to be doing okay but it would be good if we could all get out and see other people.

• At age 83 I had to move out of my home to shelter in place with relatives.

• Canceled family events.

• Canceled planned move.

• Cannot help mother in assisted living.

• Caregiving fatigue.

• Chinese virus does not worry me.

• Cleaner air and more birds are a big plus.

• COVID-19 has basically ruined my life in retirement.

• Cut off from family who are ill.

• Dealing with recent family suicide.

• Eating only at home. No carry-ins.

• Everyone that won't do things because of the virus aggravate me.

• Excessive controls.

• Exercise cancelled, church and bible study cancelled, unable to attend graduation parties, no

eating out, lots of sports cancelled live and on tv, unable to see friends who have many other

contacts, Museums closed, unable to swim in neighbors pool because of all their contacts.

Dementia support group cancelled, can't get shave at barber shop.

• Exhausted from listening to the media every day with contradicting reports.

• Extremely bored.

• FaceTime with Grandson.

• Feeling angry and disgusted with the human species.

• Feeling lonely.

• Feeling overwhelmed by negativity everywhere.

• Feeling somewhat depressed.

• Feeling uncertain about how this may affect me.

• Frustrated that even my closest family members didn't seem to take COVID-19 precautions

seriously with me being on the ocrevus and having an altered immune system because of the

medicine itself. They just don't get it!

• Getting jobs done that were long overdue around the house.

• Hanging in there!

• Has not affected me in any way.

• Hasn’t affected me at all!

• Hate all the fake news.

• Have become the at home teacher.

• Have lost 50% of my income hence my increased financial concerns.

• Have no face to face contact with elderly parents.

• Having to help son with money after job loss in Chicago.

• Husband depression increased due to lack of exercise class.

• I am deaf/blind and in a wheelchair.




• I feel cut off from my doctors, can't go anywhere - stores, pharmacy. p.o. I can't see my family. I

like having my husband home instead of gone to work all the time. I spend a lot of time in our yard

with flowers.

• I have a tentative diagnosis of MCAS, but feel too unsafe here in WA state to get bloodwork or in

person doctors visits.

• I have become the default home healthcare & errands runner for my even more elderly neighbors

whose families now only check on them by phone.

• I have lived my life as always.

• I have lost physical health and stamina.

• I live in a retirement community. I have Parkinson’s and am 90 years old so we have been isolated

more than most.

• I live in an independent living facility and although we went through a lock down, restrictions as

gradually being rolled back. Knowing so many people here it has been relatively easy not to feel

isolated or depressed, but it has happened occasionally.

• I try to await the end of this crisis with optimism and hope.

• Increased anxiety.

• Indolence!

• Just want to stress that the feeling of depression was short lived and the anxiety is low level.

• Less time with family (elderly father/ o.k. in-laws).

• Less time with family.

• Mask causes tics and seizures.

• Mask makes grocery shopping less pleasant.

• Miss exercising in a facility, miss going to the movies.

• Miss hugging the grandkids and getting close to show them how to do things.

• Miss live Amyloid Support Group - Dallas.

• Missed time with grandchildren.

• Missing family! Grieving for husband lost to Lewy body/Parkinson's last year. Thus lonesome.

• My dog and I have long discussions however he is not answering back yet.

• My gym closed for now.

• My husband is in a care home.

• My husband’s dementia seems to be progressing faster with limited contact with friends, activities

outside the home, etc.

• My personal relationships with my spouse & 4 daughters have deepened & become more fulfilling.

On the opposite hand, my personal relationship with my only son who lives 2000 miles away, has

imploded! This has shocked & dismayed me but I continue to pray for his wellbeing & though I am

deeply saddened by his refusal to stay “connected” to our close knit family I accept that he

probably does not have or is working on his coping skills. I do have hope in Gods saving grace.

• My primary doctor quit working.

• No longer feel free.

• No more long commutes for care with telehealth.

• No physical therapy or workout sessions for Parkinson’s has taken a big toll.

• None of the above has affected me I'm a very positive person, wear my Mask when I'm out stay

distance from others.

• Not applicable.

• Nothing good.




• Only a positive economic benefit to friends and family. We are uniquely unaffected.

• Our son with ABI usually resides at LTC facility. We brought him home on March 13 as we always

do for the weekend. He was not able to return due to COVID-19. he is still home and when he

goes back he will be quarantined for 2 weeks. He does not understand and we fear his health will

deteriorate. He does not speak so we don’t know how this is affecting him. I just fear and feel sad

for him that he has to remain in his room when returns. He has not been in public since he has

been at home.

• Our square dance group can no longer meet weekly, which was good physical exercise and

mental challenges.

• Paused Gym workouts.

• Personal trips were cancelled so we saved money.

• Postponed eye and dental appts.

• Really fearful of being exposed to COVID-19.

• Relatives of loved ones have died; political issues are cause for concern.

• Riding a horse 3-4 times/week.

• Son and I have DR we lost our daughter last year to DRPLA.

• Stress that increases ringing in the ears, lack of sleep and general hyper sensitivity.

• Suspended visits to provider in Miami for now.

• The government doesn't think or care about single people who are now isolated especially for us

that do what we're told to do versus the ones you see out here on the street having cookouts not

worrying my ask and I sit at home alone.

• Unable to get care needed as it is not COVID-19 related.

• Unable to visit grandchildren.

• Unable to visit parent in memory care center.

• Unwilling to put mother with dementia into assisted living during COVID-19, so moved out of state

to live with her. No respite available. I desperately need a break.

• Walked outside more, prayed more.

• We remain in our family bubble, with one person who does most of the designated shopping. As a

family we take day trips in the car, but no overnight unless in our RV, then we don't have direct

contact with others.

• Working from home is not easy.

• Worried about my husband who is older and has Diabetes and does NOT take this seriously.

• Worried about my students who live on the edge of poverty.

• Worry/fear: contracting/spreading virus, constantly changing CDC/other experts'

recommendations, being able to get PPE, grocery items, availability of community services in

general, stress of having to always be vigilant when not at home, extra work to clean things, extra

time needing to be taken with errands, appts., chores increased worry about my very elderly

parents.

11. What would you like neurology providers to know about how the COVID-19 pandemic has

affected you or your family?

• No. (9)

• N/A. (8)

• None. (4)




• Nothing. (4)

• Yes. (3)

• Access. (2)

• No comment. (2)

• Sure. (2)

• Access to care needs to be maintained and communicated.

• Accessibility has been extremely hard.

• Added stress.

• Added stress. Increase migraine since COVID-19 pandemic.

• Again a reminder to live life for the moments in life. How fragile life is! Miss hugs! Do get good

hugs from partner though I am lucky for that! Very hard on young people starting their lives and

careers. Realizing a new normal!

• Although none of us can know the future, the increased financial strain and isolation along with the

poor handling of the situation have made the future a bit more bleak.

• Anxieties are more than before.

• Anxious when others don’t follow the rules of wearing masks etc. The man in White House is a

poor leader showing zero zilch nada leadership!

• Appointments are scheduled far out. Concerned if my family needed to be seen for non-routine

care how long it would take.

• As a Parkinson’s patient, my exercise is as important to me as my medication. The governor of the

state of Maryland, by closing gyms for over 3 months denied me my structured exercise (weights,

machines, aerobic exercise) at our regular gym, and I was unable to participate in Rock Steady

Boxing at the Hagerstown, MD YMCA. I exercised on my own, but it was nothing like having

access to trainers. As a result, my Parkinson symptoms began to worsen and I needed 8 weeks of

physical therapy to get back in shape. Fortunately the gyms in Maryland reopened, just as I was

discharged.

• At age 69, feel as if I belong to the "disposable" generation.

• Basically we are sheltering in place. Using curb pick-up where possible and shopping on Amazon.

Not seeing friends, children or grandchildren face-face.

• Because I live alone, the COVID-19, has caused me to feel lonely & depressed.

• Being afraid to socialize because of my high-risk status. Living alone makes things more difficult.

Spending more time at home has increased some symptoms.

• Being all alone and having to depend on online home delivery of groceries and supplies. Hope that

the shoppers/drivers do not have COVID-19.

• Being at home every day has resulted in more stress with working from home and dealing with in

house issues. We have had a couple of blow ups due to various frustrations especially when

dealing with an elderly parent who is very opinionated and wants the world to resolve around her.

She is 82 and l did not want her to be alone during this pandemic but there are days when l wished

l stayed at home in an adjoining state. I love my family but there have been a lot of annoyances

and arguments. Some days l am just trying to survive when all l want is to work in and be at peace.

• Being isolated at home with little outside interaction has added to stress levels of the whole family.

• By remembering the outside world is not the same anymore and social distancing is so important.

• Cannot use vacation home because locals are not careful and do not use masks or spacing from

others.




• Caused much anxiety and stress, because worried would not be able to get needed prescription or

get medical services.

• Changed the activities we did.

• Close and continuous proximity without respite for caregiving exacerbated stress and depression

for the caregivers in our household. Thanks.

• Communicate with patients prearrival if handicapped patients won’t be allowed caregivers to

attend the visit that they will provide written info from the provider and physical assistance

navigating! Audit your facility properly supports patients when procedures have changed cause of

the virus. Please!!

• Concern that not everyone is taking the precautions necessary. We are extra careful, but do not

go out unnecessarily. So far we are both as healthy as before!!

• Concerned about less socialization of mom with Alzheimer’s and dad as caregiver.

• Concerned about medical care being there if needed.

• Concerned that separation and lack of touch will somewhat change our human interaction.

• COVID-19 adds to the isolation & limits supports for caregiver & person with Alzheimer’s. On the

other hand, coping safely with COVID-19 led to both watching our church services & to ordering

groceries online which has made those events easier.

• COVID-19 itself has had virtually NO impact on me personally (or my immediate family), we have

remained healthy, although cautious and following advisories for personal protection and hygiene.

• COVID-19 pandemic brought us fear of going out, not visiting our loved ones, feeling very nervous

while shopping.

• Daughter had to do on-line school which was a huge thing for her. Didn't like it. Husband worked

from home which was difficult. I worked more hours. The media made things much harder to deal

with.

• Decreased clinical staffing increased problems with contacting office for appointments.

• Definite decline in cognitive function.

• Delay in making the virus public exposed us to our sick son from January to early March. We

tested positive for antibodies but did not get sick.

• Depression and anxiety like never before - not being able to fly to see son and his kids.

• Difficulty with closure when death/ER hospitalization of family member/close friend.

• Do not feel like doing anything.

• Don’t get to spend personal time with my grandchildren. Miss getting and giving hugs.

• Don't get to personally hug my family without a mask.

• Dr Rosenberg was available by appointment at his office.

• Economic shutdown was a mistake in many ways and resulted in harmful personal situations

much worse than a risk of getting COVID-19 was.

• Extremely difficult to get Immediate Care with specialist other than just going to the emergency

room.

• Family dynamics have changes considerably. Before the pandemic, I felt like the relationship with

my spouse was 50/50 split with household chores, childcare, etc. Now, that's not the case, despite

the fact that he was furloughed and I continued/continue to work. Very frustrating and a major

source of anxiety, stress, etc...all triggers.

• Far less opportunity to pursue activities.

• Fearful of getting COVID-19. Too much isolation causing depression.

• Feel more isolated.




• Feeling anxious regarding entire family’s health. Isolation is difficult but feel it is necessary. Careful

keeping self and house clean.

• Feeling at a loss.

• Feeling fortunate to staying safe and healthy with a loving family nearby!

• Feeling isolated and missing friends and family.

• Feeling more anxious and fearful of being around others who may expose me to COVID-19.

• Feeling of desperation and ability to aggressive new treatments.

• Feelings of isolation have affected my overall well-being.

• Financially.

• Fine.

• For the patient and the caregiver, there is an added layer of stress.

• From inability to sleep I developed delirium. From medications to help with sleep, depression and

anxiety my walking is more unstable, I am sleeping 13 - 14 hours a day. My anxiety, depression

and intrusive thoughts of death have cleared up. We are a 4-generation household living on two

floors. I am not comfortable that family members are always remembering to wear a mask, wash

their masks or stay 6 feet distance from others. The three older adults have high risk health

problems.

• Frustration associated with trying to stay safe as a patient who is taking ocrevus. If I just would

have had my secondary Progressive MS diagnosis oh, I wouldn't even be as high risk necessarily

as diabetics. The feeling anxious also stems from living with a daughter who is a nurse and had

taken care of positive COVID-19 patients. Understanding that it is a novel virus and we were

learning as we went along and are still learning, I understood at the time but that doesn't change

how helpless you feel at times. I had seen my provider before the pandemic and during the

pandemic because I go every 6 months, and I must say that I thought my neurologists office during

the pandemic did an excellent job not only ensuring my safety but my husband's as well and ask

all the appropriate questions, did temperature checks, maintained 6 feet distance, had a plexiglass

or glass barrier between us, took us directly back to the room that we weren't sitting in the waiting

room, and used appropriate PPE and hand washing. As a former registered nurse, I was

impressed! And it made the office visit for me and my husband less anxious. My doctor did offer

me Telehealth when my next 6 months appointment is due and if we're still in this pandemic.

• General information is appreciated.

• Glad I was an only child and don't mind being alone.

• Got the closets cleaned & organized - after that we were ready to go out to eat!

• Harder to find access to modalities such as modified yoga.

• Has made normal activities difficult but doable.

• Has not affected me or my family.

• Hasn’t affected us health wise, except made it very difficult to get medical treatment for our special

needs grandson.

• Hasn't affected our family that much. We take the necessary precautions but continue to socialize

with each other. It has just brought confusion as to the changes made (masks not

necessary/masks are a must; children don't contract the disease/children now contracting disease;

isolation from others is best if you are older and have conditions that make you susceptible to

contacting disease). I could see where certain personalities could become very depressed and

frightened. I believe because I have not allowed all that is reported on the media affect me I am

able to get through this without it affecting the way I live.




• Have found that while home on our small farm, life is pretty much the same. But, the day of after

returning home or day after a trip into the community, I feel momentarily teary a time or two, less

motivated and what we call 'discombobulated'.

• Have had difficulty scheduling appointments/receiving care.

• Having family member from 1 to 92 has made getting pertinent information difficult. Lack of

daycare and school, no assisted living visits, and having the illness provided challenges for family

members. Dealing with the death of 10 people we know has also been difficult.

• He does not receive therapies. He is encouraged to do functional activities as therapies. He needs

to walk to prevent him being in a w/c. Staying in his room makes me fear he will lose that ability.

• Headaches have increased.

• Higher level of depression and anxiety on my part because my husband doesn’t have good

judgment in his actions.

• Holiday meals did not happen. Birthday parties did not happen. I am afraid my grandchildren will

get an inferior education.

• How important it is to be safe enough to meet in person.

• How it has limited daily life and do many things husband can do no longer available.

• Husband has MCI & it is difficult to keep him socialized, but doing our best. He is still physically

very active. Wish we could attend church more to see our "church family".

• Husband has Parkinson’s and is concerned about becoming ill.

• Husband's Alzheimer's symptoms such as memory loss, anxiety, depression have worsened.

• I am 81 & this has been a depressive time for me. The more I am alone the harder it is for me to

want to be with people again. I no longer want to do anything in my apt. I can't die because it

would kill my brother. He has MS & resulting very poor health. But I am not sure living in

quarantine for many months is really living. I am safe in quarantine & my retirement community but

is it really worth it? They have offered us safe activities but I am just not interested. I am alone. I do

now have professional help for my depression.

• I am 83 and in a retirement community. Have missed seeing family and any social life. Not the

lifestyle I want for later years and have seen deteriorating health in several close friends. It is a

depressing lifestyle!

• I am a former medic, that retired years ago. However, I know this pandemic is real, however, I also

know this pandemic is not as serious as it is being played out to be, and is more politically

motivated than medically necessary. That angers me from a medical point of view, and the general

American public cannot, or does not see that. Or maybe they don't want to believe it.

• I am fortunate to live alone in a retirement community. We are able to socialize outdoors which has

made all the difference to me. I can control my exposure very well unlike some of my friends who

live with family, care for grandchildren or are employed. I also am not affected financially. I enjoy

being home and do not miss many of my previous social activities. I am one of the lucky ones.

• I am in health care and never stopped working. Actually got used to no one on the road and the

decrease of noise from machinery, cleaner air wish it could stay that way without people being ill.

• I am more negatively affected by the civil unrest and violence than my fear of the virus. I can

protect myself from infection in many ways, I cannot protect myself from madness.

• I am NOT concerned. I KNOW WHAT TO DO...AND DO IT. I believe we ARE each responsible

for ourselves. I ACCEPT ONLY MEDical views from a FEW sources. NO ONE REALLY knows

what is going to happen.




• I am probably quite rare--I have felt almost no effect from the Pandemic. Oh yes, for several

months I did my daily walk in a local outlet mall because the state parks were closed. And of

course I also miss going to restaurants.

• I am sad that I can no longer attend religious services nor can I attend exercise classes which I

used to attend 3 times a week and I feel they contributed to my fitness.

• I am seeing elderly couples and family members being isolated from each other as a partner or

family member must be in an Alf for care.

• I am so grateful for technology so I could connect with people & church. Have had to cancel a

vacation to see family 2 times, due to health & airlines. Food prices are up which is hard.

• I am very concerned about contracting virus. All in all I am well and I connect with others by phone

and Zoom. God Bless!

• I avoid going out unless absolutely necessary. When I do go out to the grocery store, bank, etc. I

make sure I am masked and have hand sanitizer in my car to use.

• I avoided making an appointment for a follow up visit to discuss my Parkinsonism.

• I believe I am enjoying staying home too much. I am not physically active. I know how to exercise,

but am motivated by my group.

• I developed a breast infection and I could not get any medical attention. It was very stressful and

shameful on medical provider!

• I didn’t have confidence in my referral to a neuro-otologist handled this way. The evaluation was

done via telehealth.

• I don't have a family, so N/A.

• I don't let it stop me from trying to do what I wish to do. Others and their fears stop me.

• I feel anxious because my dad has cancer and he's anxious about getting COVID-19. I feel

isolated. Thank you.

• I feel scared all the time.

• I felt much more isolated. Could have benefited from more check-ins.

• I had a MS flare when the temperature went above 85* but didn't contact my neurologist as I didn't

want to have to go to hospital for 3 days of IV steroids.

• I had an attack of vertigo during which time I couldn’t stand and became delirious. No diagnosis

except possible dehydration.

• I had been delaying companion care but the 24x7 caregiver responsibilities forced my hand. I now

have help 3 days per week and my life stress and patience with my husband has improved.

• I had to wait to have surgery.

• I have already discussed my problems with my provider and he gave me very helpful choices for

the future in this pandemic.

• I have been in isolation since 3/7/2020 living away from family.

• I have been isolated, but it has not bothered me a great deal. Being 92-years-old means that my

activities are limited, so with extensive reading I have not fared badly, I have cancelled several

medical appointments, but they were routine ones and not essential.

• I have been quarantined since mid-March. I live Ina Senior Independent Living. I am 81-years-old.

We are not allowed to mingle with other residents and all activities have been stopped. Our meals

are served in our apts. We are required to wear masks anytime we are out of our apts. No visitors

are allowed. For six months most people living here have seen no family. The dining room, library,

tv rooms are closed. 79 people live here and it is like living alone. We are not transported by our

bus to shop or attend intertwine. Our bible studies are stopped. This is a big building and I can




walk the entire hallway and be alone. No one here is sick and we have no positive COVID-19

tests. Our van does transport people to Doctor appointments on Mon and Tue. We have residents

here with dementia and they are not doing well.

• I have had more migraines!!

• I have had time to see that my mother’s dementia has gotten worse by the way she depends on

me. Also that I seem to have more times when I can't think of the correct word for something.

• I have MG among other AI issues. The COVID-19 Chinese virus initially exacerbated the MG

symptoms but it has subsided with monitoring what I watch & listen to.

• I have Parkinson's; as a Parkinson's patient I derive a great deal of comfort from my neurologist.

Not being able to see him in the office, enjoy the warmth of his friendship and the comfort of his

care, I feel the loss.

• I have two daughters that are essential workers on the front line (Occupational Therapists) dealing

with COVID-19 patient recovery. They have to be extremely cautious when they come home, so

as not to take a chance of exposing me. (i.e.: changing clothes in the garage, washing their

clothes immediately, showering, etc.) before they even talk to me. As I am one of the most

vulnerable "targets" of the virus, (at 83 with underlying issues) there is a lot of stress and anxiety

involved.

• I have watched more television and more news than pre-COVID-19. I used to go to a lot of dance

and exercise classes pre-COVID-19 and instead simplified: go on mostly 30 min walks around the

neighborhood and do a TV show called Classical Stretch Essentrics DVRed from PBS most days.

I think Classical Stretch by Essentrics is a great exercise show & could be good for people with

various neurological problems looking for exercise. The title does not explain what the show is. For

those with speech and swallowing issues, I took a class last Fall re: playing a musical instrument

called Didgeridoo which was in neurological literature I read long ago. It can be played a few

minutes a day and help with speech and swallowing for neuro issues and apparently sleep apnea I

was told in the class. Thanks for your magazine and work!

• I have weathered the COVID-19 because I know that there is a greater power that is in control.

That being our awesome God and therefore I do not worry.

• I live alone and have not really had any personal hands on contact since March. My family live in

town, but we feel we cannot hug. I miss that so much.

• I miss my exercise class. I attended three days a week and the class is for 50-year-olds and up.

The class helps me with my balance issues that were affected due to brain surgery.

• I miss regular contact with family and friends. My mother is 95; in an assisted living facility that has

been on lock down. She has dementia which has gotten worse with lack of visits and activities.

There is so much differing information, it’s hard to know what guidelines to follow.

• I prefer that any discussion regarding my son not be publicly discussed.

• I recognize the need for isolation, however it has caused me to become much more anxious!

• I think it as an additional level to the issues already at hand. I was asked at my last appointment

how I was doing with COVID-19 and the changes it was bringing. I think it needs to be

acknowledged and understood that it can add to anxiety and depression as well as isolation.

• I think it has made depression and other mental illnesses worse in people already suffering from

these conditions. It has also made it scary to go back to ordinary medical checkups and care.

• I think it important to have variety to one’s schedule. The monotony of the same routine after 3-4

months has started to wear on me. It’s tiresome and somewhat boring that each and every day is

the same.




• I think regular exercise, yoga, and a sense of purpose (and humor!) have kept my family and me

moving forward.

• I think televisits should continue even if COVID-19 does not. It's a way better experience.

• I think the new media has blown this pandemic out of control. I am watching so little news at this

time. I think more time should be spent on the number of people that have recovered instead of

the number of deaths.

• I was concerned that if my son had seizures and was injured due to seizure-induced fall, I would

not be able to be with him in the hospital.

• I worry about getting COVID-19.

• I would like for you to know that the pandemic has afforded us a marvelous insight into God’s

intentions for mankind at this moment in time ~ it is His way of disciplining us, His children by

saying, “You go to your room & stay there till I say you can come out!!! While you sit there alone, I

want you to think about how you have been behaving lately ~ have you done what I wanted you to

do? Do you ever TRY to do what you know you should do? How have you taken care of your

spouse, your children, your parents, your family, your community." It’s God’s way of giving humans

a chance to “think about” what you are doing with the precious time I have blessed you with &

resolve to do better. It’s about time man had clearer vision & what better year than 2020?!

• I would like them to know that family and friends have been more important than ever. That the

fear of contracting the virus is the hardest. I wish our government had one protocol for all of us to

follow.

• I’m a caregiver to my husband who is in a hospital bed in our living room. He is 85. I am 74. Our

ages make us more susceptible to the virus. Our son does all the grocery shopping for us because

he doesn’t want me in contact with others. Even my friends. I haven’t been to the grocery store in

months. I have to rely on someone else. Usually our son. I don’t have friends come to visit

because they may have been exposed to someone with the virus. My friends and I are crafters.

We used to get together twice a month to craft. It was my two times a month to feel normal and to

get together with women who had my same interests. And it gave me a few hours to be with

people and not have to worry about my husband and caregiving. I used to go shopping at craft

stores. I used to take craft classes. I used to meet friends for lunch to celebrate their birthdays. I

don’t do any of these things anymore. Too many chances of bringing home the virus to my

husband.

• I’m dealing with my problem my own way.

• I’m having migraines since the pandemic and I believe they are stress related because have been

migraine free prior to COVID-19.

• I’ve been to the hospital twice during pandemic and I came home worried about did I get exposed

to COVID-19. I did not but the anxiety about getting sick is definitely real!

• I'm still here and I'm still alive. I wear a mask and stay away from people. My girlfriend and my

service dog are my constant companions.

• I'm upset that people are so fearful and panicky and standoffish over this whole thing.

• I'm very concerned about the safety of the plasma supply, since I depend on ivig. I wonder if my

doctor will recommend me for a vaccine if one becomes available. I worry a lot if I have to go into a

doctor's office. I wish I liked televisits, since they're convenient, but it just isn't the same. I'm tired of

staying home, but scared to go out. I'm becoming somewhat reclusive, although I'm glad I can

connect with our family and with friends by phone.

• Important to continue to stay in touch with providers.

• Increased anxiety for me and my teenagers.




• Increased anxiety.

• Increased awareness of maintaining exercise to support neurological health.

• Increased isolation and COVID-19 has also increased migraines from anxieties.

• Increased stress, social isolation, limited access to medical care. All of these and more have

combined to make this a more difficult season living with my condition.

• Increased telehealth visits, email questions to physicians, etc. Some visits can work well in this

format.

• Insurance coverage an issue ongoing for family member.

• Isolated, miss family especially grandchildren!

• Isolation and lack of safe space to exercise has been difficult.

• Isolation is the worst and panic attack when going to the grocery store.

• Isolation, access to professional medical services.

• It has affected me by having to wear face masks.

• It has been fine for me.

• It has caused a great deal of anxiety among many friends.

• It has certainly increased anxiety, although I have learned how to control it pretty well.

• It has definitely affected the Parkinson patient by not socializing and exercising as much.

• It has made it harder for me to seek care for my condition because of the restrictions that have

been put in place regarding visitors or caregivers coming with me for appointments. It has made

me anxious over the possibility of having to go to the ER for the same reason. I cannot drive due to

my condition, so I can't come alone & I have PTSD with an extreme case of social anxiety which

makes it impossible for me to come alone even if I could.

• It has made me realize how fragile we are as a society and realize how people can deny reality

around them. Too many people are not following simple procedures. Very disappointed, almost

but not quite depressing.

• It has made me think differently about the USA and the government I thought we had. I feel let

down, left out, and anxious daily.

• It has not really affected us.

• It hasn’t.

• It hasn't affected my family or myself. I don't know of even one person who has tested positive let

alone have symptoms.

• It is an isolating event. No visits with family.

• It is frustrating ☹️ having to be cooped up in the apartment and people are not wearing their mask

and you can't even get to a doctor's office but anyway it is frustrating ☹️.

• It often feels like a cloud hanging over me, trying to make wise choices to keep others safe;

sometimes anxious about the tug between enjoyment and safety.

• It really hasn’t affected my health in any way.

• It would be helpful to know some activities that would be brain stimulating beyond reading. I'm

sitting too much. Reading 5 to 6 hours a day.

• It’s been important to follow online exercise (e.g. boxing) opportunities. With pool closed for so

long, boxing helped keep my strength and balance stable.

• It’s been such an inconvenience and I miss interacting with extended family and friends.

• It’s definitely affected our mental health. My 6-year-old is too scared to go anywhere.

• It’s isolating and the isolation has made a scary new diagnosis even more scary.

• It’s made me so scared to go for my in hospital for my plasma exchange.




• It’s possible to be just fine!

• It’s very hard on my family because of limited social contact plus can’t go outside.

• It's a struggle keeping spirits up! I fear for those isolated in care centers.

• It's only me and I have enjoyed the time to focus on my hobbies, weaving, needlepoint, painting

and making jewelry and reading.

• It's very difficult to be physically isolated from your family.

• I've been disabled with fibromyalgia and chronic fatigue syndrome since 1997. I lost my career,

finances, friends many years ago. I've shared a home with a dear friend many years now, and

several cats. I've lived a quiet, semi-secluded life for a very long time. My children live in other

states. Life for me hasn't changed very much. I'm limited in shopping and recreational places. I

spend most of my time at home, and now I just spend a little more time.

• I've enjoyed staying at home and doing things I'd been putting off. Many projects off my 'list' of

things to do.

• I've had friends to die from this disease & am sorry for their family’s loss. Also, one I really miss

because we were in contact fairly often. One friend moved away because she lived with the

deceased.

• Just having this many special needs kiddos at-home has given us the opportunity to pour into

them more. But it has also been super difficult because we don't get breaks....

• Just making us more aware of how people do not get all the facts straight before they panic and

stop using good sense.

• Just more isolation and hard to deal with all the changes.

• Just that our general stress levels are up and to be alert for worsening symptoms from this. They

know this already!

• Just that we are cautious.

• Keep up the good work!

• Keep up the good work. I was skeptical about telemedicine but now I’m a believer. Don’t abandon

all personal visits if possible.

• Knowing I have Lupus I am aware if I contact COVID-19 I will never see my family.

• Lack of social interactions and not as much exercise-no gym.

• Lack of socializing and concern about the virus and exposure.

• Less options.

• Lessened care over all specialties led to my overall health decreasing.

• Like nearly everyone I know, we tried to make the best of the situation and follow the isolation

rules. We did not eat out or go out without mask, gloves.

• Limitation of utilizing community resources for care of my husband and myself, because of

concern for exposure to virus. For example; canceling in home care giver for respite, not using

regular exercise at YMCA, limitation of getting my husband out for outings, library closed...

• Limited contact with others. Not able to go out do activities.

• Limited family contact and family gatherings.

• Limited family get togethers.

• Limited my opportunities to interact with associates and family.

• Limited travel. Actually beneficial. Less stress. Improvement in range of motion.

• Live online by Zoom, access to exercise and support groups are easily available :).

• Loneliness has been the main problem I have experienced.




• Look at the patient's experience through the eyes of the patient rather than the treating clinician.

Maybe show more empathy.

• Losing some ground physically & coordination-wise due to being unable until recently to keep up

with therapy & exercise routines due to p.t & gym closures. Tried to substitute some similar things

from YouTube but suffered some ortho injuries as a result. Lack of social interaction of course

results in less positive mood.

• Made family members needlessly worried.

• Made us more aware and cautious along with routine practicing of techniques to reduce risk of

acquiring COVID-19.

• Main goal is to avoid contracting the COVID-19.

• Makes us feel more isolated.

• Mental health care is extremely important.

• Mentally it has made me more aware of issues and realize they will probably not get any better. I

am more worried about debilitating problems possibly sooner than later.

• Miss spending close-up time with family. Miss the gym. Miss going out. The more I sit around the

less energy I have.

• Missing being with friends and family. Missing social gatherings.

• Missing being with them for birthday and anniversary celebrations. We will not be having

Thanksgiving or Christmas with them.

• Mom isolated from family while hospitalized in specialty hospital.

• More difficulty planning interactions with family and friends like visits or online chatting. Miss

meeting family for social occasions like birthdays, dinners and chatting.

• More isolated and less social interaction including with some family members. Since we're trying to

stay in our own little groups to avoid the spread of COVID-19.

• More pressure to keep those I care for safe. Caretaker for 96-year-old mother.

• More virus will mutate and will continue for about 2 years or more.

• Mother in memory care assisted living and we were not able to visit her.

• Much less contact.

• My daughter is a social person and is very bored staying at home. Has moods and screams at

night.

• My daughter is high-risk, so we have been very careful about staying isolated and safe. But the

longer the pandemic goes on, the more difficult it is socially and it is difficult dealing with future

plans that are pushed back, because therapies are less available, etc.

• My daughter who has dysautonomia, contracted COVID-19 and her symptoms mirrored her

disease symptoms. The symptoms increased and flared with the COVID-19.

• My depression has increased quite a bit. I am sad and cry over anything. Miss seeing my son. And

so afraid of others getting sick.

• My family is spread across the country. I can’t see them. When? I’m eighty years old.

• My husband has Alzheimer’s and when his day care center closed he so very rapidly declined I

could no longer care for him. Thankfully I had been doing research and visiting facilities for the last

two years knowing that eventually this day was coming. My preferred facility called to say they had

availability and I was able to place him there right before the shutdown. It is a small (18-resident)

private pay home and he has adjusted quite well and seems to enjoy his new home and friends.

Thank God.




• My husband has been working long hours and I am currently off from working in the school

system. The upcoming school year is somewhat stressful due to the unknowns of how schools will

operate. We are close to retirement and hope that it will not delay our plans.

• My husband has late stage Parkinson’s and is in a health care facility. Until recently I was in able

to visit him. I can now have 30-minute outside visits. This has been difficult for both of us as I had

been visiting him daily.

• My husband sits in front of the TV all the time because he can't get out to see friends. That is not

good for his early dementia. He needs more social interaction. I'm trying to get him more

interaction with family but they are all working.

• My husband with Parkinson's became weaker because he sat home more watching TV and

became more confused.

• My husband’s condition (Lewy Body Disease) has worsened - which might be part of the disease

pattern - but which I also attribute to lack of outside stimulus (voice and occupational therapy,

personal trainer, social interaction with friends and family).

• My nearly 98-year-old mother (who had been playing Bridge 4 times per week prior to COVID-19

restrictions) has been declining both mentally and physically over the past few months. Because

she lives in a independent living senior community (where all meals are now delivered to

apartments and there is no social contact with residents and visitors are not allowed inside the

building) I worry about her decline. There is no stimulation other than TV and the caregiver I have

hired to check on her 1-2 hours each day. I also worry about other seniors who are unable to have

family visit them. It is not a healthy situation. My mother would rather take her chances with

COVID-19 than to live like this, but it is not permitted.

• My spouse is in a care facility. I cannot advocate effectively for his care because I can’t always see

him. If he is sleeping when I arrive or if it is raining or other inclement weather, he can’t come out to

the patio to visit. He has lost most of his language, so he is not able to advocate for himself except

in outbursts of negative behavior- grabbing others food because he is hungry. However, one other

result is to give him more medication which makes him very tired. It is a vicious cycle. My mother

moved in with me in October. All avenues for socialization have stopped for her to meet others-

even church. This leads to depression and anxiety for all of us.

• My test was positive. I had no symptoms. Bummer. Still no symptoms a month later 😤.

• My wife had major surgery and we've had to restrict access to our house so she doesn't contact

COVID-19 plus my issues avf can't afford to catch it.

• My wife is dealing with MS, she is more social, and has missed her exercise classes at the YMCA.

She also has been denied being involved in her passion as a watercolorist.

• Need more understanding.

• No change for my husband.

• No changes so far.

• No difference, just more homebound, like most people. I have ET, it has not worsened or caused

me more concern.

• No effect so far.

• No longer attend support group with other caregivers. My loved one no longer attends his adult

day program resulting in almost no respite for me.

• No news is good news.

• No problems at all. Too much fear being spread causing other people to lose their jobs and

causing depression.

• No problems.




• No....Because it has not affected me or my family; thanks to the good LORD!

• Not anxious to see other family members at this time.

• Not applicable.

• Not being able to go out and see friends or have them come over. Not being able to do therapy.

• Not being able to visit with my family is very hard.

• Not knowing the future.

• Not medical, but we bought and then sold--sight unseen--a planned-for retirement home.

Eventually will have to find another property--perhaps years away, given COVID-19.

• Not much adapt and survive.

• Not much affect.

• Not much change, due to Parkinson’s, social structure changed anyway. I miss having our grown

family over for dinner.

• Not much changes.

• Not seeing outside light has worsened my sleep patterns. Often sleep days, up nights.

• Not sure what impact my concerns about the future are having on me. Sometimes it takes months

or years later for hidden challenges to surface.

• Not sure.

• Nothing at this time. Our family has been fortunate.

• Nothing in particular. Being retired, the only thing it really effects is doing things outside the house

that we would normally do. We have not attended church services since mid-March and have

stayed out of the public in general. It has stopped our travel and face-to-face contact with friends

and relatives.

• Nothing more.

• Nothing really.

• Nothing really. I just hope they will be able to see me when I need them to see me.

• Nothing really. Just self-isolating.

• Nothing specific other than my 18-year-old grandson contracted COVID-19 and we haven’t seen

or meet with whole my daughter's family for 32 days.

• Nothing that has not already been addressed in this survey.

• Nothing that is different from anyone else.

• Nothing. I have not let it affect me.

• Ok.

• Only one family member was affected. Her case was light and so far no others have been

affected.

• Other effects or cause on neurology conditions.

• Other than wearing masks, hasn’t.

• Our country has over-reacted with shut downs, now how do we get out of this?

• Our doctor seems concerned and willing to do webinars to keep us informed and aware of the

many issues of Parkinson.

• Our family has been affected in minor ways compared with those individuals who have actually

had COVID-19. Personally, I canceled medical procedure because I did not feel comfortable going

to the hospital as concerned might be more likely to be exposed.

• Overall it is much more difficult to get an appointment with primary care.

• Places we used to frequent without limitations now require masks and reservations. Some people

have difficulty with wearing masks, such as my husband who has asthma and congestive heart




failure. Also, my son who has Autism cannot endure wearing something on his face or head due to

sensory issues.

• Please offer telehealth visits to new patients as well. With inflammatory conditions as well as over

active immune response, new patients need appointments as well, and telehealth allows both the

patient and those we live with to stay safe and have much needed care for existing or new

conditions. Making progress toward understanding one's condition and identifying potential paths

to recovery are vital! Thank you for listening and CARING!♡

• Please see my previous comments regarding access to testing as per my state governor's

mandate on freezing routine testing.

• Poor or no family social interaction.

• Probably the extra stress has worsened some symptoms.

• Prohibition of visit to parent in a memory care center is the biggest problem I have. We have

begun using the internet for more purchases. Mainly the loss of socialization giving the feeling of

isolation. It has allowed us to see the number of people that are uncaring or concerned about the

welfare of others through refusal to use masks and social distancing.

• Realize that quality of life improves substantially when there is flexibility to do more things

remotely.

• Relationship with providers has not changed. The changes have been primarily personal, with less

family contact, isolation, and concern that politics, not science, is controlling our response as a

nation. I will be okay, but I worry that providers will have to deal with more mental health issues as

time progresses.

• Remember some people don’t even have a computer.

• Restrictions at Senior living facility where I reside are so constraining that I am not allowed to

exercise as I should and would like to do, even though my exposure to others would be

exceedingly limited. Agree with Caregivers for Compromise about need to discuss options for a

less restrictive program as it would appear that COVID-19 will be with us for a LONG!! time and we

need to figure out safe ways of doing activities with very limited exposure.

• Rules, rules and more rules.

• Show some compassion with those with diseases.

• Since my husband has been in Hospice since Dec. 2019, we have not been leaving the house

anyway. So, COVID-19 has had no effect on us.

• Since unable to visit in person and frequently loved ones in nursing facilities, have decided to keep

loved one with Alzheimer’s in her own home. To do so requires me to relocate out of state. Trying

to keep her socially distant, I have not had helpers in her home and I have no respite. Have

begged my brother to come relieve me for a week, but he lives 16 hours away and is afraid of

COVID-19 exposure on a plane. In addition, he has not been socially isolating as much as we

have, and I fear he may bring COVID-19 to us. Also, would like my mother to have stimulation

from her friends, but the heat has prohibited us from visiting outside, so I’m considering inviting her

friends over for a visit in person in her home. When taking my mother to doctor appointments or

passing neighbors, must clue her constantly as to social distancing and use of mask. It’s like

watching a toddler constantly. Initial appointment with neurologist was TeleMed, with six-month

follow-up to be done in person.

• Social distancing and isolating at home with limited social interaction and no public outings have

been very difficult for a 19-year-old with severe nonverbal autism.

• Some family members are very stressed and anxious. Others family members not on the same

page which causes frustration. The misinformation and changes in information have made it extra




hard to know exactly what to do. Some take it to the extreme. Others act like COVID-19 is not

even a concern.

• Spouse and I both have our moments of anxiety over finances, work, seeing too much of each

other.

• State medical boards should be more flexible about telemedicine across state lines. If a doctor is

licensed in one state and in good standing, he or she should be allowed to practice medicine by

telemedicine across state lines for the duration of this crisis. This is especially true of board-

certified specialists. I was forced to change providers due to limitations on the practice of medicine

across state lines. It came down to a choice between unacceptable travel with both its exposure

risks and its impractical 14-day quarantine requirements on the one hand and changing providers

on the other. I live in a small rural town remote from neurological providers with a subspecialty in

Parkinson's and when Parkinson's was originally suspected, I opted for treatment in an urban

center in a bordering state because of an unacceptably long waiting period to see a subspecialist

in an urban center in my own state. The 5 1/2 hour trip each way for appointments was

burdensome, but acceptable pre-COVID-19. It became unacceptable post-COVID-19, but

telemedicine across state lines would have allowed me to keep a provider with whom I was

satisfied.

• Still caring on and being very careful with mask, washing hands and germs.

• Still need to check up on the patients.

• Stress, isolation, lack of physical contact, lack of social interaction, etc. is causing emotional

upsets, confusion, weight gain, mental decline, depression.

• Telemedicine is not always the answer. Some are not tech savvy, like myself, and find it very

frustrating to communicate this way. I find myself becoming very anxious when I know staff is

trying to get me to use tele-methods, and I know I’m limited to my phone, which I struggle with. I

can only depend on my children’s help so much before they become frustrated with me —

technology is so second natured to them! Thank God.

• Telemedicine is very difficult for the elderly, and doesn’t really seem real to them. My mother

seemed more interested in being able to recognize a painting hanging in her doctor’s office than in

the therapies being discussed. Later she mentioned she wasn’t sure that the encounter counted...

• Telemedicine seems to be a win-win. It’s great for me.

• Tell them I fully believe our government and our media is too much hype. Media and

pharmaceutical have put too much hype into it and they're just making money off of it and I believe

it is being news to divide our country our people... And they are also manipulating us.

• Thanks for all the fine services the neurology providers have rendered to patients.

• That anxiety can show up as physical symptoms. Sometimes (during this COVID-19 period) I've

not been aware consciously of feeling anxious at all, but I notice shortness of breath, a fast pulse,

or a clench in my stomach. I've realized that in my case these are likely physical symptoms related

to anxiety. The reduction of time for physical activities (due to gym closure) has been a challenge

as in order to get cardio exercise, I need to get out in the world and walk around with a mask,

which poses challenges - some stress, and breathing fully with a mask on. All said, both I and my

family have been incredibly fortunate.

• That depression can be a serious matter in times like this.

• That some people don't take the pandemic seriously and are doing things that put themselves and

others at risk.

• That the isolation and inactivity of quarantine, while helpful for staying alive, is deleterious for living;

words are more difficult to articulate, peripheral neuropathy increased, and an overall retracted




nervous system engagement with the wider world. Fear for my husband's safety while at work,

extreme relief when he returns home, increased worry and stress all around are creating tension

and short fuses with regards to interactions with others, everyone feels it, we're all of us affected.

Be well and stay safe.

• That we are scared to venture into public; therefore we begrudgingly accept telehealth visits. We

have also been unable to work with our state-run disability employment services due to

shutdowns.

• That we need flexibility and understanding for things such as requiring visits for refills, etc. many of

us are patients and caregivers as well, adding to pressures and stress.

• The anxiety and isolation are serious factors.

• The anxiety levels of everybody have sky rocketed. They are compounded by people who don't

believe COVID-19 is real or a big deal.

• The biggest stress is the dissension amongst everyone, and the unrest. I haven’t seen a

neurologist for my Dystonia in about 2 years because Botox didn’t work and I’m seeking alternative

therapies. Even though I’m retired, I am not socially interacting with many people, and that

stresses me, and I have more time to think about how my symptoms are not improving.

• The effect on patients has worsened symptoms of dementia due to isolation. This, then means,

more stress on caregivers, which makes the caregivers’ tasks of caring for the patient, while

maintaining their own mental health, even harder; there is little distraction while you watch your

loved one slip away from you.

• The hardest part has been separation from my son (my only family), who lives in Maui and had to

cancel his trip here this summer.

• The impact on the aged who rely on personal visits for their mental health are most impacted,

mom's 90 birthday party was a challenge & ended up being a success due to our persistence.

• The increased attention to the virus increases concern about the problem. The situation is

disturbing. One feels concerned, and helpless. Little helpful information.

• The lack of personal contact and fear, real or otherwise, caused by an infection not unlike the

millions that humans have seen throughout the ages is destroying our social networks. Are we

regressing to becoming mere organisms now rather than human beings with intellect and close,

bodily interactions among one another? If we constantly sterilize and refrain from shaking hands

and hugging we will lose our humanity. Our immune systems, particularly for our youths, are also

being compromised from over-protectiveness; "use it or lose it!".

• The lockdown and masking are much worse than the virus. Quality of life has been destroyed.

• The pandemic and resulting quarantine gave me time - time to reflect on my good fortune. I am

managing my Parkinson's Disease and that as a senior citizen my interests are many, finances are

stable, my spouse is a total joy, and my family and friends are currently okay.

• The pandemic has made me afraid to make appointments for x-rays (possible fractured rib from

coughing), mammograms, other annual check-ups and dentist appointments. It has kept me away

from most of my family, including grandchildren.

• The pandemic response seems to have deepened the political divide and left citizens fighting each

other leaving the virus to spread unimpeded. The whole situation is very disheartening.

• The situation can really make the existing issues much worse.

• The social isolation created by the COVID-19 stay at home order/social distancing were far worse

for our healthy being than what COVID-19 flu was after all got it anyway. Wasn't real bad. Treat it

like a flu. Under 50 and healthy get to work. Others stay home or be careful.

• The uncertainty has amplified our financial and health concerns.




• There are other issues that may affect your health- such as decreased exercise and lack of access

to places where you would normally interact with humans.

• There has been stress from not knowing all the available information for this virus as it changes

rapidly. Also frustrated with the lack of a detailed plan by the Federal Government due to their lack

of concern or deliberate ignoring of the pandemic.

• These are difficult times that we all need to continue to take her medication have an understanding

and get through this together and be safe.

• This new normal is too depressing. We need social interactions with family and friends.

• This pandemic has been very stressful and financially draining on me and my family. I have had

issues with sleeping and concentrating.

• This pandemic is hurting not just us but world-wide. News is negative. We need positive, news.

• This virus affects everyone differently. Stop saying you will get over this if you just move on.

• Those that often feel isolated are feeling more isolated. My nephew is on a respirator so is always

cautious about exposure, but needs to be even more cautious during the pandemic. This means

more time with fewer people visiting which was an important part of his life and overall mental

health. Isolation is not a plus in this case.

• Tired of being at home.

• To check in with the patient and follow up.

• To understand the COVID-19 virus causes damage to every organ of the body including the brain.

• Try to STOP the fear in most people, who are running around scared!!! Stress the problem areas

to be addressed---deaths in nursing homes (at least 70% in Ohio), NY State area--over 1/2 deaths

in the USA etc. Be truthful!!!

• Twelve-step meetings no longer meet in person and all such support is only available on Zoom

meetings. Which are frankly annoying, not helpful.

• Unless I see the provider I don’t feel the telehealth is sufficient. Thanks.

• Very frustrating at times but learning patience.

• Very limited social interactions other than family. Fortunately I have a large family.

• Very stressful worrying about if my son has issues with his VP shunt, will he be safe going to

hospital.

• Was unable to see family members that were in a different state. Was doing well on a

maintenance program and the treatments I was getting shut down so was in a lot of pain and am

trying to start over! I pray people will start taking this seriously.

• We appreciate all of the health care professionals and workers who are carrying us forward

through these tumultuous times. Thank you so much for your dedication and the inspiration and

knowledge you share with us.

• We are all concerned about any of us contracting the virus as we all have some underlying

conditions. As caregiver for my son and husband who are both more compromised than I am, I

worry about who would care for them if I got the virus as we have no family to help. I also worry

that I will get it and give it to them as I am the only one who goes out and really only to grocery

shop. We are very careful and strictly follow all safety protocols but so many people aren’t. We are

all getting tired of being cooped up and only seeing each other. And, I am exhausted from doing all

the work.

• We are coping.

• We are forced to stay home so much more and that is causing extra problematic issues within the

family. Sometimes being together all the time is just too much!!!!!




• We are fortunate because my husband is in a very small "board and care" home which

understands the need for my visits. They also know our home is literally isolated. I have very little

physical contact with others and miss my husband and vice-versa…

• We are fortunate. My wife and I are retired....no young children to educate or entertain....we can

make occasional trips to grocery and post office.....we can walk around our small village (wearing

masks).....and we have friends to call if we need help!

• We are isolated within the family pretty much. Outside contact is on Zoom. Children are home

schooled, which they were anyway, except one who attends Perkins School for the blind. He will

not be attending in person and will go back to home school, with consultation.

• We are just fine.

• We are losing personal contacts.

• We are not able just to go to parks, zoos, etc to have a relaxed atmosphere. A person coughs or

sneezes and others around stare. Makes a person feel isolated and sad.

• We are overwhelmed with balancing the new telework environment, distance learning, lack of

social interaction and lack of social support, etc. There is too much to track, too much new ways of

doing and thinking of things....brains are on overload.

• We are staying at home, are very careful when we do go out. Wear masks. Just waiting for this to

be over. I have read about the COVID-19 & DO NOT WANT to get it, so we are all very careful.

• We can't go visit the Alzheimer's person in her home. We pay caregivers to go, hoping the

company they work for is following CDC guidelines. So far so good, and she understands why

we're not there.

• We feel encapsulated, and not as motivated to keep up regular routines (exercise, meals,

activities) which are a must for an 82-year-old with Parkinson disease. The little joys are gone. No

meals with friends or family. No social outlets outside of home. One can only walk the old dog so

much during the day. Aggressive attitudes and new "safe" routines are intimidating even at the

grocery, pharmacy or local park or neighborhood.

• We feel it is a man-made virus for political purposes and am not going to be a sheep and

controlled by fear tactics.

• We feel that we are living in a bubble. We go to grocery store, pharmacy, bank, and for a ride once

a week. No visitors. No getting together with friends or family. Less active and my walking has

gone from good to poor. I am working on brain activity more doing Sudoku, word search and

sometimes other games. Watching too much TV.

• We had no significant respiratory symptoms, and none of us were hospitalized. For our son with

autism (who is the person that sees neurology), it has been difficult for him not to go to day Hab,

and keeping him as involved as possible in community with safety measures has been a

challenge. We had had his yearly visit with Neurology (for seizure disorder) just prior to COVID-19

becoming an issue. Although he was not tested, I do believe my 24-year-old son with autism had

COVID-19 (based on his symptoms and his older brother who lives in our home was quite ill as

well. We all wear masks at our respective jobs, sanitize, wash hands, social distance, etc. I

recently purchased face shields to have available for family as well.

• We have accepted it a current part of our lives.🌲

• We have had to practice all the recommended safety procedures, but have not been able to visit

with friends or family. Outings are limited to doctor visits or shopping for groceries. Fortunately I

have several projects that keep me busy in my home, so I don't feel isolated. I keep in touch with

my family with emails and phone conversations.

• We miss being close. Large family, four generations.




• We miss contact with grandkids!

• We need to know if this is all a bunch of bunk and if we are losing our livelihoods because of

politics!

• We, me in particular, have been staying away from where many people congregate. This has

impacted our grocery shopping. We live in a small town with many young people that believe it is

okay not to wear a mask. We mask up, everywhere.

• We're worried, frightened and looking for guidance in a "new normal" where no one really knows

what is the right thing to do. I'm not speaking of masks, testings and social distancing. We know

those are the proper things to do (even though there are some who claim otherwise). Rather, we

need calm leaders willing to step forward in our medical communities and set standards for the

care of those with chronic health concerns. At times, it feels like we have been forgotten and

pushed aside in the chaos of the plague that has descended upon us. We need doctors, nurse

practitioners, nurses and aides that still comfort, guide and encourage us to exercise, eat right,

take our medicines properly and to remind us to contact our providers when we have questions or

concerns. We need to know that we are not forgotten.

• While I am concerned about others, it has not really affected me.

• Will wait a little longer.

• With acquired peripheral neuropathy via scoliosis & failed back surgeries, & through inherited

Charcot-Marie-Tooth disease, one’s limited mobility & not being able to accomplish daily errands &

traveling during COVID-19 has increased & exacerbated neuropathic pain, neuropathy symptoms,

leg weakness & emotional distress along w/the added physical stress. COVID-19 has made the

mental prison that neuropathy presents to the patient even more constricting, confining & painful to

bear.

• With my underlying Parkinson's Disease and now I have dysphalgia I am afraid of aspiration

pneumonia. I also have chronic asthma so with all of this I am afraid if I do catch COVID-19 it will

be the end of me. I only go out to doctor's appointments. My wife does all the shopping and meal

preparation. I worry that she might catch COVID-19 and unintentionally pass it to me. I try not to

watch too much news on TV because it is scary.

• Worry, concerned about contacting COVID-19.

12. How would you describe yourself? Other (please describe):

• 50-year antibiotic background.

• 77-years-old that is afraid of this virus.

• A private person.

• Am 84-years-old with health problems that have affected my brain. Not serious yet. But no reason

for my symptoms. Gave up driving at age 80 turning head too fast looking over shoulder then

turning forward caused a second or two in my judgement at the wheel. Sudden movement I’d need

to stop and then continue.

• At risk, age 78 and 80.

• Aunt of an ALS patient.

• Brother had surgery for an oligodendroglioma gluons.

• Brother of an Army veteran who has Parkinson's disease.

• Brother with Parkinson's died from COVID-19.

• Caregiver for an elderly mother.




• Caregiver to Parkinson's patient now deceased.

• Certified brain injury specialist.

• Child with neurologic condition.

• Currently retired. Worked with children with disabilities.

• Daughter has MS.

• Daughter with MS.

• Depressed knowing the future.

• Ehlers Danlos with comorbidities.

• Epilepsy—partial seizures with no loss of consciousness.

• Essential tremors & migraines.

• Extended family members-stroke, etc.

• Family member has out of control migraines.

• Family member with ALS, dementia.

• Former caregiver to my dad with Parkinson's. Deceased 2016.

• Former caregiver.

• Former caretaker.

• From a CADASIL family.

• Granddaughter has Fragile X. My son has MD.

• Grandma to child with Sturgeon Weber Syndrome.

• Had a 58-year-old daughter who died of Alzheimer’s!

• Had a sister who passed away at age 60 with dementia.

• Had stroke.

• Help senior vets with navigating VA benefits.

• Husband died of PD before pandemic.

• Husband had Parkinson’s which caused my heightened interest in neurological issues and

treatments.

• Husband has Alzheimer's.

• Hydrocephalus.

• I am 72 years old.

• I am a registered nurse who is a mom to a 24-year-old son with autism, with my son having a

seizure disorder since age 2014.

• I am caregiver to 2 individuals with neurological conditions and up until last summer I also had my

mother living with us. She passed away from advanced Alzheimer’s a year ago.

• I am intelligent, still curious, happy in my marriage, proud of my son, and welcomed in my

community.

• I have Parkinson's D.

• I was a caregiver to my husband who had dementia then passed away in 2012.

• I was a caregiver to my husband who passed away in 2019. I am glad that he did not have to

endure this Pandemic. I remain concerned for my health and the health of family and friend. It is

hard to stay up. But family and friends and my Dog boost my spirits. I think I am not alone in

feeling anxious and depressed. But lately I feel better. Thank you.

• Interested in Alzheimer's prevention due to sibling death.

• Interested in research.

• LBD.

• Living in senior facility with my husband who has ALZ.




• Me & husband both need neurologist appts.

• Migraines under control.

• Mom has Alzheimer’s.

• Mom who doesn’t live with us.

• Mother of son with neuro disorder.

• My dad (who is now deceased) was a stroke patient. I have peripheral neuropathy in my feet.

• My daughters and I have EDS with accompanying neurologic symptoms.

• My father has Parkinson's and LBD.

• My husband may have Parkinson's disease and my Father got a neurological condition in his late

40's.

• My mother has MS and her sister had it.

• Neuropathy.

• No diagnosis has been reached for my muscular malfunctions.

• Not interested.

• Optimistic female 😊.

• Parent living in another state.

• Parent of an adult with neurologic condition.

• Parent/distant caregiver.

• Parkinson victim.

• Parkinson’s.

• Peripheral neuropathy.

• Pre-Doc Clinical psych.

• Previous caregiver to someone who is now deceased.

• Previous caregiver.

• Prior caregiver (person deceased).

• Relative of person with neurological condition.

• Relative with neurological condition.

• Retired nurse.

• Retired R.N.

• Scoliosis.

• Senior with adult child who requires support.

• Sometimes help with a person with neurologic condition.

• Spouse of someone with epilepsy.

• Still seeking help to stop the pain from Thalimic syndrome.

• Support group facilitator.

• Support to folks with issues.

• Suspected neurologic problems in family.

• Therapist.

• Told I may have had a stroke 3 years ago. Taking care of my HBP and general health.

• Used to be a caregiver to a friend.

• Was caregiver for mother with Alzheimer’s 24/7.

16. What is your race/ethnicity? Other (please specify):




• American German.

• Anglo.

• Armenian.

• Asian and white.

• Eurasian.

• Franco American.

• German/Polish.

• Human.

• Latin and white.

• Mutt.

• No one.

• Norwegian.




QUESTION GUIDE 1) Have you ever attended a neurology telehealth visit? Mark all that apply. This survey defines a telehealth visit as two-way, real-time interactive electronic communication between a patient/caregiver and a health care provider using audio or visual equipment.

Yes, before the COVID-19 pandemic

Yes, during the COVID-19 pandemic

No [exclusive response]

NEUROLOGY TELEHEALTH VISIT QUESTIONS [Display Q2-5 only to those who select ‘Yes’ in Q1.]

2) What type(s) of neurology telehealth visit(s) have you attended? Mark all that apply.

Consultation/new health concern

Ongoing/follow-up care

Emergency department care

Care while hospitalized

3) How would you rate your overall satisfaction/dissatisfaction with the following neurology telehealth visit(s)? [Display question and appropriate response options based on selection(s) in Q2.]

Very satisfied Satisfied Dissatisfied Very dissatisfied

Consultation/new health concern

Ongoing/follow-up care

Emergency department care

Care while hospitalized

4) Thinking about your most recent neurology telehealth visit, please select up to 3 aspects that you liked most about the experience: [Randomize response options.]

Easy to schedule appointment

Appointment times fit more into my schedule

No need to travel

At the time of the visit, reduced/no wait to meet with provider

Improved communication with provider

Increased quality of care

More time for questions

Use of telehealth technology

Decreased risk of exposure to COVID-19

Other (please specify):___

5) Thinking about your most recent neurology telehealth visit, please select up to 3 aspects that you liked least about the experience: [Randomize response options.]

Difficult to schedule appointment

Appointment times did not fit into my schedule

Longer wait time to meet my provider

Difficult to communicate with provider

Provider found it difficult to communicate with me/us

Technology issues disrupted appointment

Unable to find privacy for the appointment

Concerns about confidentiality

Decreased quality of care

Less time for questions





ACCESS TO NEUROLOGY CARE QUESTIONS

6) Has the COVID-19 pandemic affected whether you or your family seek access to neurology care? Mark all that apply.

Yes, I postponed seeing a new provider

Yes, I postponed follow-up visits

Yes, I lost health insurance coverage

Yes, I did not seek care in an Emergency department

Yes, I chose not to be hospitalized when a healthcare provider advised for admission

Yes, a new provider postponed initial visit

Yes, an established provider postponed follow-up visits

Yes, other (please describe): ___

No changes [exclusive]

Not applicable [exclusive]

7) Did you or a family member have an established neurology provider prior to the COVID-19 pandemic?

Yes

No

8) How has the COVID-19 pandemic affected your relationship with your established neurology provider? [Display only to those who said ‘Yes’ in Q7.]

Improved

Stayed the same

Worsened

9) If you would like to comment on how the pandemic has affected your relationship with your established neurology provider, please share here: [Display only to those who said ‘Yes’ in Q7.] _______________________

QUESTIONS FOR ALL

10) How has the COVD-19 pandemic affected you, personally? Mark all that apply. [Randomize response options.]

Contracted COVID-19

Family member, friend, or loved one contracted COVID-19

Lost work

Increased work

Increased financial concerns

Limited social interactions

Connecting more via technology

Feeling isolated

Feeling depressed

Feeling anxious

Existing symptoms have worsened

Have more time with immediate family

Increased time to engage in personal interests

Limited or no access to therapies I was previously receiving

Increased access to new therapies


11) What would you like neurology providers to know about how the COVID-19 pandemic has affected you or your family? _____________________




DEMOGRAPHIC QUESTIONS

12) How would you describe yourself? Mark all that apply.

Person with a neurologic condition

Caregiver to an individual with a neurologic condition

Interested in neurology

Other (please describe):___

13) Where do you currently live?

US Northeast (CT, MA, ME, NH, NJ, NY, PA, RI, VT)

US Midwest (IA, IL, IN, KS, MI, MN, MO, ND, NE, OH, SD, WI)

US South (AL, AR, DC, DE, FL, GA, KY, LA, MD, MS, NC, OK, SC, TN, TX, VA, WV)

US West (AK, AZ, CA, CO, HI, ID, MT, NM, NV, OR, UT, WA, WY)

14) What is your age range?

Under 18

18-20

21-30

31-40

41-50

51-60

61-70

Over 70 years

15) What is your gender?

Man

Woman

Transgender

A gender not listed here

Prefer not to answer

16) What is your race/ethnicity? Mark all that apply.

Hispanic or Latino

White

Asian

Black or African American

American Indian or Alaskan Native

Native Hawaiian or Other Pacific Islander

Other (please specify): ____

Prefer not to answer [exclusive]

17) Just prior to the COVID-19 pandemic, what was your annual income?

Less than $15k

$15-$50k

$51-$100k

More than $100k

Unemployed

Prefer not to answer

Documents

2020 COVID-19 Patient & Caregiver Survey Report