“The Unsung Longevity Factor of Social Connection” – webinar notes

I first heard about the negative affects on health of social isolation at an atypical parkinsonism caregiver conference we organized several years ago. People who are socially isolated have mortality rates similar to smokers and twice the mortality rates of obesity. The advice given by the conference speaker was that we should do all that we can to address isolation — whether we be caregivers or those with a neurological disorder. This is especially important because caregivers tend to become isolated and those with atypical parkinsonism disorders tend to become isolated.

Recently, I came across an early 2019 talk on a similar topic — “The Unsung Longevity Factor of Social Connection.” The speaker was Amy Yotopoulos, who was then with the Stanford Center on Longevity. The focus was on the physical and mental health affects of loneliness and social isolation. On the flip side, people who are socially connected are happier, healthier and live longer.

Ms. Yotopoulos addresses how we can make more health-enhancing social connections. Here’s an excerpt from her talk about what three “action steps” can create more connection in our lives:

#1 Prioritize social engagements in your own life and make it a healthy daily habit. (As important as physical exercise. Examples – text a friend; take in neighbor’s garbage.)

#2 Be intentional and make it personal for you. Don’t put it on autopilot or wait for it to happen “naturally.”

#3 EASE back in to these 4 steps to end loneliness: (from “Loneliness” book by John Cacioppo and William Patrick)

— Extend yourself: do it safely, a little at a time

— Action plan: recognize that this is hard; ask people about themselves; get others talking about their interests. You don’t need to hit it off with everyone.
Commit to having 6-8 conversations with someone. See past your differences. Don’t worry about rejection.

— Seek (or select) collectives: find groups with similar interests, activities, and values. That makes it easier to connect.

— Expect the best: having a positive outlook about the outcome will make it easier to act.

Granted these suggestions were pre-covid but I think nearly all of the suggestions are applicable to our lives during the pandemic. So much can be accomplished over the web, over the phone, or in a physically-distanced setting.

The recording of the talk is available here.

My notes from the talk follow.

Be sure to check out the questions and answers at the bottom. The speaker answered this question — “How to help older, retired men who have few friends, not interested in volunteering, and not interested in making new friends?”

Best,
Robin
————————————–

“The Unsung Longevity Factor of Social Connection”
Webinar sponsored by Stanford Health Improvement Program
Speaker: Amy Yotopoulos, Stanford Center on Longevity
January(?) 2019

Notes by Robin Riddle, Brain Support Network

We can keep people happier, emotionally-engaged, and mentally sharp through purposeful activities and meaningful interactions with others.

We are inherently social beings. We need each other to survive. We all want to be connected and to feel connected.

This talk will address:
* Risks of social isolation
* Benefits of social connection
* How to improve your relationships with social connection

Social isolation is deadly. Feeling socially isolated is associated with:
* 29% increased risk of coronary artery disease
* 32% increased risk of stroke
* 64% increased risk of developing dementia
* 26% increased risk of death
* and increased risk for high blood pressure and addiction

Terms:
* Social isolation – objective
* Loneliness – subjective; self-reported; can be around others and still feel lonely

People who are isolated or disconnected have a mortality rate that is three times as high as those with more and deeper social ties. Twice the mortality rate as those who are obese. Mortality rate is the same as those who are smokers (smoking 15 cigarettes or more a day).

Look at all the things our society (public health work) has done for smokers and the obese but how little we’ve done for those who are isolated.

Like obesity, this is stigmatized. People feel ashamed to admit feeling lonely or being isolated.

This is an issue for all ages, not just older adults. The prevalence of loneliness is highest among adult freshmen.

“During my years caring for patients, the most common pathology I saw was not heart disease or diabetes; it was loneliness.” — Dr. Vivek Murthy (surgeon general, 2014-2017)

In the UK, there is a minister of loneliness. They recognize long-term health effects.

Why are we becoming more disconnected? Decrease in meaningful relationships and purposeful activities.

Research showing we are more alone in middle age. More of us are living alone, especially at younger ages.

50% of US adults are single. Marriage rates (and divorce rates) are declining.

Up to 40% of Americans feel lonely, feel isolated from others, lack companionship, and feel their relationships aren’t meaningful. In this group, 54% feels that no one knows them well.

“Sightlines Project:” Only half of Americans are doing all they can to stay socially engaged.

Baby boomers are least socially-engaged of all the adults in the US.

Social networks are getting smaller. When asked how many confidantes they have, “zero” is the most common answer. This is one in four Americans.

Story of Lyft driver who is a caregiver to his father. The driver has no one to care for him. The driver has diabetes.

One consequence of our increased longevity and decrease in social connection is that an estimated 22% of hospitalized older adults are “unbefriended.” aka, kinless older adults or elder orphans. No family or friends to help with medical decisions or visit them.

8 million people in the US age 50+ have no close kin. Women are more likely to be kin-less than men.

Americans increasingly need to rely on friends. We need to cultivate these relationships. Even if we are married or have children, they may not be able to assist us later on. Friends are important.

We are finally becoming aware of the problem. Naming the problem is a first step. Stigma (of admitting loneliness) plays a big role in not getting help.

Stanford-Harvard-AARP study: the lack of social connection among older adults is costing Medicare $6.7 billion/year.

What is social engagement? Quantity – Number of social relationships we have and the frequency of interaction. Quality – Number of people on whom we can depend and can depend on us. Depth of relationships.

Social engagement leads to better health, higher income, employment, and purpose/meaning in life.

10 Domains of Well-being: (Stanford research)
* Social connectedness – most important domain.
* Then, lifestyle behaviors.
* Then, physical health.
* Next is stress and resilience.
* Next is emotional/mental health.
* Others: purpose/meaning, sense of self, finance, spirituality/religiosity, creativity.

Quantity vs. quality of relationships.

Books: “Bowling Alone” and “Alone Together” (affect of technology)

Depth of relationships:
* meaningful conversation
* sense of support
* can you call someone at 4am?
* can you borrow $400?

Socio-emotional selectivity theory (from Laura Carstensen, Stanford): as a person ages, their social goals shift from being knowledge-related to being emotion-related.

Emotional well-being increases with age. We focus more on the positive aspects of our lives, as we age. A large body of research shows that emotional experience improves with age. People are slower to show anger and more prone to see silver linings. They solve emotionally charged conflicts more effectively and are more likely to forgive and forget.

U-shaped curve of happiness. International phenomenon. Also inter-species! We are least happy in mid-life (40s and early 50s).

Book – “The Happiness Curve: why life gets better after 50,” by Jonathan Rauch

“Baby boomers are isolating themselves as they age,” Laura Carstensen, May 12, 2016.

Older adults may downplay the affect of retirement on their social lives and well-being. Retirement can also be a hit to one’s identity.

Boomers might be empty-nesters, they may have millenials living at home, or they may be caring for older parents.

Stanford survey of those who are primary caregivers of elderly relatives —

Percent ages 55-65 who interact with family:
General US population: 64%
Family Caregivers: 82%

Percent ages 55-64 who have family support:
General US population: 69%
Family caregivers: 54%

So family caregivers have more interaction with family but feel less supported by family. Caregivers may have one-directional relationship with the elderly person they are caring for.

Caregivers are more likely to feel lonely and need support from family and friends.

“Dunbar’s Circles”:
3-5 – very close friends and kin; needed for optimal well-being
20 – friends and broader family
50 – acquaintances
150 – familiars (might be neighbors, barista who knows your order, someone you see and chat with at dog park daily)

When inner circle dips below 2 or 3, we feel lonely. This is your body’s way of telling you that you are lacking something. Like hunger or thirst.

You can diversify by:
* type of connection (like the circles)
* age

We miss out by not having friends of all ages (20 years older, 20 years younger).

How do we get inter-generational contact?

Meaningful relationships:
* Friend social support
* Meaningful interactions with spouse/partner
* Family social support
* Frequent friend interactions
* Frequent family interactions

Group involvement:
* Workforce participation
* Participation in community or religious activities
* Volunteer
* Converse with neighbor

Sightlines Project researched these 9 actions (above). Americans are not as socially connected as they were 20 years ago.

We can become more connected by focusing on friendships. This takes time:
* 50 hours before we consider someone a casual friend.
* 90 hours before we consider someone a real friend.
* 200 hours before we consider someone a close friend.

We need to develop supportive friends, which means being willing to be vulnerable as this creates connection and intimacy.

We need to be better at being a good listener, asking good questions, and sharing.

Maybe have a goal of one friend from each decade.

7 in 10 say they can rely on family members when facing a serious problem.

Family more likely to help in time of need, while friends are more likely to help you enjoy life. We need both. “Family” can mean “family we choose.”

7 in 10 married Americans say they share meaningful conversations with their partner at least once per week. Husbands report more meaningful conversations than wives.

There’s an important role for purposeful activities to better health.

Relationships with neighbors are considered an important aspect of social integration. Feeling like you belong. Creates a sense of community.

Only 1 in 3 say they interact with their neighbors on a weekly basis. This has decreased over time.

NextDoor – trying to address this.

Only 1 in 4 Americans volunteers. Similar percentage over the last two decades. This is not a social norm in our culture. Most who don’t volunteer say that no one has asked them to, and they don’t know of opportunities for this.

VolunteerMatch – trying to address this.

Who volunteers?
* Women more than men.
* 40% of college graduates volunteer vs. 9% of those with no high school degree.
* 35-44 year olds – most likely to volunteer, probably at kids’ schools and with kids’ sports. This is a cultural norm for this age group.

Maybe MDs should give a prescription “to volunteer.” Like a flu shot.

Employees think they will miss their paycheck most when they retire. But what do actual retirees miss the most? Their social connections.

Telecommuting and open office plans contribute to feelings of social isolation.

Standing desks (in an open office plan), which allows for more eye contact, reduces feelings of social isolation.

All age groups have declined participating in community and religious activities. Highest drop among those age 55 and older.

Loneliness is contagious and so is kindness (pro-social behavior). One person can infect many others.

“Social fitness training” – doing five acts of social kindness a day. Even smiling at someone. Both givers and receivers were happier. Benefits lasted for months. People began to “pay it forward.”

Meaningful relationships between old and young create a “secret sauce” that can benefit both generations.

Older adults are the only natural resource that is growing.

Our society is age-segregated.

Conflicting research about the effect of social technology on well-being (loneliness, anxiety, depression). Social media and the internet can be both a boon and a problem. Perhaps it’s different for different age groups. Perhaps asking question of “doing what” is more important than “how long.”

We believe that social technology can be beneficial when it enables us to connect with loved ones but can be a detriment when it creates more social isolation or derision.

Even one text can create a connection.

Teens say social media helps strength friendships and provide emotional support, but can also lead to drama and feeling pressure to post certain types of content. (Pew Research, 2018) There are trade-offs.

This is a natural human instinct to build social connections.

Action steps to creating more connection in our lives:

#1 Prioritize social engagements in your own life and make it a healthy daily habit. (As important as physical exercise. Examples – text a friend; take in neighbor’s garbage.)

#2 Be intentional and make it personal for you. Don’t put it on autopilot or wait for it to happen “naturally.”

#3 EASE back in to these 4 steps to end loneliness: (from “Loneliness” book by John Cacioppo and William Patrick)

— Extend yourself: do it safely, a little at a time

— Action plan: recognize that this is hard; ask people about themselves; get others talking about their interests. You don’t need to hit it off with everyone.
Commit to having 6-8 conversations with someone. See past your differences. Don’t worry about rejection.

— Seek (or select) collectives: find groups with similar interests, activities, and values. That makes it easier to connect.

— Expect the best: having a positive outlook about the outcome will make it easier to act.

Take-home points:

1- Research shows that staying socially connected is an important way to increase long-term well-being and longevity.

2- Feeling lonely is a normal response to a vital need. It is your body’s way of telling you to connect more with others. Only you know what your personal RDA of connection is!

3- Remember the two main ways people can reduce social isolation and feelings of loneliness — cultivate meaningful relationships and participate in purposeful group activities.

Questions-and-answers:

Q: Does introvert or extrovert make a difference to how much connection is needed?
A: This is very personal. It could be that an introvert prefers meaningful one-on-one relationships over group activities. What brings you a feeling of joy and connection?

Q: How is loneliness contagious?
A: When people are feeling isolated and lonely, they aren’t reaching out to other people. Others avoid people feeling this way (as this is visible). Those others become more self-conscious about their social connections and therefore less likely to engage with others in the presence of those who are feeling isolated. (Based on “subtle” research by Nicholas Cristakis, now at Yale.)

Q: How to help older, retired men who have few friends, not interested in volunteering, and not interested in making new friends?
A: (Common question, especially from women.) Women have historically been the carriers of the social life in a heterosexual marriage. In our culture, men are not as able to be as vulnerable and open. I’m OK calling a friend, asking her to come over and talk if I’ve had a bad day. Whereas my husband would probably want to talk to me. This is why wives who are widows do much better than men who are widowers as they are not able to reach out themselves.

It’s difficult to be the spouse as we aren’t able to change our spouse’s behavior. Encouraging people to come into the house, if the husband is less able to leave the home. Invite people over.

Most people over the age of 70 have hearing loss. Most either don’t know it or do they know it but aren’t wearing their hearing aides. Untreated hearing loss has a substantial relationship with our social connections. On average, people wait 10 years before getting hearing aides. If people wait 10 years before getting hearing aides, they’ve already lost cognitive ability and brain power. Men are more likely to have hearing loss. So she recommends getting hearing checked and wear hearing aides. The aides are so much better.

Q: Is there research on a reduced ability to converse after prolonged social isolation for years and years?
A: Not that I’m aware of.

Our social interactions are learned behavior. If this is a muscle that gets un-used, it can go away. But it can come back. Start small.

Q: Is the Stanford Center on Longevity researching remote work spaces (like those recently opened in SF and SJ)?
A: We should be but I’m not aware that they are.

Q: I just moved and got divorced. How do I make new friends?
A: We assume that our friends are going to stay with us our whole lives (from high school on, or from college on). There are milestones (moving, starting a new job, divorce, widowhood) that happen throughout our lives where we need to be mindful about making new friends. Important to prioritize this. Go back to the EASE acronym. Start small in outer ring. Select one or two people in the middle space who might have potential; put more time into those people.

 

“Caregiver Toolkit in Uncertain Times” (such as covid) – webinar notes

In late June, Presbyterian Senior Services (pssusa.org) in New York City hosted a webinar for caregivers on how to protect yourself and your loved one during this time of covid-19.

Presenters offered guidelines for questions to ask and procedures to follow to prevent transmission of covid-19 to you or your family:

  • if you have or need in-home care
  • live in an assisted living facility or are moving to assisted living
  • for home care services following hospital discharge, and
  • for venturing out as businesses open.

Presenters also provided:

  • Online covid-19 resources
  • A list of equipment needed to collect vital signs for telehealth visits
  • Go-Kit packing list with the basics you will need (and want) if you have to take your loved one to the hospital and they are admitted
  • In-home covid-19 test kit information

This webinar was recorded and can be viewed at:  https://www.youtube.com/watch?v=zcfJ8UaGsZs

Denise Dagan, with Stanford Parkinson’s Community Outreach, listened to the webinar and took notes.  See below.

================================================

Caregiver Toolkit in Uncertain Times
Webinar hosted by Presbyterian Senior Services
June 25, 2020

Notes by Denise Dagan, Stanford Parkinson’s Community Outreach

Presenters: Melissa Sheehan and Laura Radensky, LCSW


Mind Set Preparation – Keeping Calm

Keep a mindset of being open to not knowing what is next

Accept continuing risks and take reasonable precautions

– Wearing masks
– Hand washing
– Limiting people coming into our home or ensuring those who come into the home have proper protective equipment.
– Limiting exposure
– Practicing self care (eating well and attending to health issues)
– Err on the side of caution as businesses reopen
– Realize information about covid-19 is an evolving body of knowledge
– Look at good data:  Center for Disease Control (cdc.gov), NY State Novel Coronavrius (coronavirus.health.ny.gov), and Johns Hopkins (coronavirus.jhu.edu), Institute for Health Metrics and Evaluation (healthdata.org)



Equipment Preparation at Home

* Ordering personal protective equipment including masks, gloves, hand sanitizer, thermometers.  Keep in mind soap and water are recommended over hand sanitizer.

* Higher level of equipment including face shields, gowns, scrubs, N95 and KN95 masks. This equipment should be used by hired care givers working in your home. Expect that N95 masks be reused due to shortages of equipment.

* Equipment to collect vital signs prior to telehealth visits, including:

– blood pressure cuff

– pulse oximeters.  Normal blood oxygenation is at least 95%.  In many cases, upon arrival at emergency rooms, covid patients’ blood oxygenation levels were in the 70s, 60s, even 50s. Doctors tell patients to visit the hospital if blood oxygenation drops to 93%, or below.

– scales

– thermometer. All staff working in your home taking temperature twice daily.  Everyone entering the home should have their temperature taken before entering.



Testing Options

Greater availability of testing options

Possibility now to request COVID-19 tests and antibody testing

Being able to have testing in your home and sent to lab
* LabCorp – Pixel at-home kit
* House calls:  doctor visits at home may do covid-19 testing

Accuracy issues and possibility to still be contagious:
* In light of this if you have been exposed or have symptoms, self isolate
* Be extra vigilant about wearing masks hand washing to protect yourself and others



Planning Ahead

Home care, assisted living are still options, but:

* Assisted living has limited visitation, social interaction, entertainment, etc.

* In addition, assisted living facilities are doing twice daily temperature checks, etc.

* There are far fewer covid-19 cases in assisted living facilities.  Most senior residential care facility covid cases have been in skilled nursing/nursing homes.

Live-in service and fewer caregivers with home care:

* Just like clients discontinued in-home care due to concerns of catching covid, on-home care workers stopped working as in-home care givers due to:

  • self isolating due to personal exposure
  • child care while schools are closed
  • personal concern over becoming infected or infecting others

* As businesses reopen more caregivers should become available.  Some services have changed policies to limit exposure to patients.

Advance Directives, especially the choice of a healthcare proxy since covid-19 is a fast moving disease process. Make sure your advance directive information is available so carers don’t have to go looking for it.

Online cultural options:  musueums, opera, music, concerts



The “New Normal”

Ensuring restaurants and other public spaces are accessible and safe

Having 60% (or higher) alcohol wipes available and proper spacing of tables

Preparing ahead to ensure safety



Providing Care to Those Who are Ill

Most home care agencies have N95 and KN95 masks that filter 94% of small particles to provide safe services to clients

Face shields, gowns, and other equipment also provided by agencies

Arranging for workers to stay home if have had contact of are symptomatic at least 14 days and then having testing.  Newest guideline requires two negative COVID tests at least 24 hours apart before returning to work

Some agencies particularly with LPN staff will provide care to active COVID clients

Sometimes, aide services were on hold for active COVID clients but skilled services are still provided (nursing, physical, occupational and speech therapies)



Provider Questions

How are staff being tested and monitored for cases?

– And are there any cases among residents and staff?

– Testing of staff and residents should happen weekly.

How is information on any cases being communicated to care partners?

– Testing results should be available to anyone who asks.

– Notification of all involved parties should be communicated (text, email) immediately.

What are the steps being taken to clean and sanitize?

– Should be a robust procedure for cleaning the facility.

– Should be regularly cleaning high touch areas.

– What are they cleaning with?

– Are there check lists for which areas and how often cleaning is done?

– Who’s doing the cleaning?

– How are staff being trained on procedures?  Recommend ongoing training on hand washing, sanitizing and procedures for social distancing.  Recommend three times weekly in service training on procedures for hand washing, using hand sanitizer, taking temperature at building entry, check list of all personnel entering the building to clear those without fever, exposure or symptoms.



Creating a Go-Kit with what you need in an emergency

  • Cell phone
  • Charger
  • Glasses / hearing aids
  • List of phone numbers
  • Copy of advance directives
  • List of medications (with dosages and times)
  • Copy of insurance ID cards
  • Small amount of cash or prepaid debit card
  • Book
  • Pajamas / underwear
  • Hairbrush
  • Toothbrush / toothpaste



Transitions to Home from Hospital – Resources to Manage

Medicare home care and changes in protocols for care under COVID-19

  • Skilled nursing care
  • Home care services
  • 30 days, but can be extended if need can be shown

What to expect when arranging for private home care

  • Some limitations in staff with multiple language skills
  • Maintaining a safe environment at home when visitors come in



Know before you go – the New Normal

Call ahead or look at the website of your destination.  Does the business have a policy posted online for keeping staff and patrons safe?

Are they conducting daily health checks of their employees?

Are high touch and public areas being regularly sanitized and cleaned?

Is social distancing being observed when possible?

If patrons are waiting, are guidelines marked for social distancing?

Are employees wearing face coverings when appropriate?

Is hand sanitizer readily available?

Are signs displayed about hand hygiene and stopping the virus?

Are employees enforcing masks, social distancing, and stopping unhygienic behaviors?

If everything looks like it did 6 months ago, ask questions!

“Strategies for managing feelings of loss and grief” (Elaine Book, MSW)

This wonderful list of strategies was compiled by Elaine Book, social worker with the Pacific Parkinson’s Research Centre in Vancouver, BC, Canada, in July 2020. This list was shared at a recent WellMed Charitable Foundation teleconference that featured Ms. Book, in conversation with Parkinson’s caregivers. (There is little about this list that is Parkinson’s-specific. Nor is it specific to caregiving.)

Ms. Book’s list includes this quotation:

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” (Vicki Harrison)

There are many good ideas here. The last one resonated with me:

Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

Happy reading,
Robin


Strategies for managing feelings of loss and grief
by Elaine Book, MSW, RSW
Pacific Parkinson’s Research Centre, Vancouver, BC, Canada
July 2020


Keep a journal

  • Writing out thoughts and feelings is an effective way to look at what is happening. Writing about your insights and reflecting on them can be empowering, can help you to find fresh opportunities and move in a new direction.  Sometimes writing about your losses can help you gain some emotional distance, make it more manageable and less frightening. Feeling the pain is healthier in the long run than denying the fears, anger, sadness, loneliness or resentment.
  • If you are new to journaling, start with writing down a daily highlight or gratitude. Or use prompts like “What makes me angry or sad or scared” or “What have I learned about myself” or “I found it funny and endearing when the PWP …” or “The unexpected gift I received”. [PWP = person with Parkinson’s]

Establish goals for yourself

  • Facing losses can leave you feeling out of control…try to counteract that feeling by setting goals for yourself like learning a new skill or taking a course or volunteering. Set up a plan that can work, one that is reasonable and rewarding.

Take action to stay healthy

  • Eat well, exercise, laugh every day, take breaks, sleep, maintain spiritual connections, remain intellectually stimulated, socially connected, use stress management and relaxation techniques like breathing.

Mindfulness

  • Grounding practices like yoga, meditation or even walks in nature help to pace yourself.
  • Apps for mindfulness practice – www.headspace.com, 10%happier, Breathe

Surround yourself with those who feed you

  • Be with people whose presence energize you and stay away from those who drain you.  Create a “psychological family “…. the people you turn to in times of crisis and celebration. This circle of support can go beyond family.  The people who are there for you in good times and bad are the ones who will be able to understand the losses of the caregiving experience. They can provide a healing hug. Also recognize the formal resources and support systems that are available to help you if your psychological family needs expanding.

Work together

With your loved one, address and come to terms with the losses and changes in function. A condition can bring you closer for having a shared experience.

Create something new

  • New plans, new connections based on how your life is now. Look for ways to connect with the PWP as he/she is today. Seek out joy in your relationship with the PWP.  [PWP = person with Parkinson’s]

Reflection

  • Think about past challenges in your life and how you navigated through them. Then use those experiences to remind yourself of your courage and strength and possibly use some of the same strategies again. What was helpful and what was not. Trust in yourself that you have the ability to meet the present challenge.

Reframe

  • Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

“Managing Blood Pressure in Parkinson’s” – Webinar notes

In early June, the Parkinson’s Foundation (parkinson.org) offered a webinar on managing blood pressure in Parkinson’s disease (PD), featuring neurologist Albert Hung. He discussed how PD impacts blood pressure (BP) regulation, how to diagnose BP issues, and approaches to treating BP in those with PD. Many in the atypical parkinsonism community — especially those with multiple system atrophy (MSA) and Lewy body dementia (LBD) — experience these BP regulation issues, so we are sharing information about the webinar here.

In particular, one issue in PD, MSA, and LBD is orthostatic hypotension (OH), which is a drop in blood pressure when someone stands upright. To be defined as OH, the drop in BP associated with standing must be:

  • Systolic BP drops at least 20 mmHg or more
  • Diastolic BP drops at least 10 mmHg or more

Systolic is the upper number, and diastolic is the lower number. So a person whose BP is generally 130/70 would be experiencing OH if the person has a drop in BP to 110/60 with standing.

As the speaker says:

OH is largely a consequence of gravity: when you are upright, your blood tends to go to your legs, and your circulatory system has to work harder to keep it moving against gravity. This is why some people who work on their feet all day may have swelling in their feet or ankles by the end of the day.

Some people experience symptoms (are symptomatic) when their BP drops, while others are asymptomatic and can’t even tell. Common symptoms of OH include lightheadedness or dizziness; weakness; fainting; difficulty thinking (especially in older individuals). When OH causes symptoms, it is especially worrisome.

This webinar was recorded and can be viewed here: 

www.youtube.com/watch?v=O73BA5tc7ek&feature=emb_logo

Lauren Stroshane with Stanford Parkinson’s Community Outreach viewed the webinar and shared her notes.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Managing blood pressure – Webinar notes
Presented by the Parkinson’s Foundation, Northeast Chapter
June 4, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

When it comes to managing Parkinson’s disease (PD), there are a lot of symptoms a movement disorders specialist typically asks about: tremor, walking, balance, and other aspects of physical functioning. One thing that sometimes falls through the cracks is blood pressure (BP), but this can have a significant impact on one’s quality of life and overall health. Compounding the challenge, once someone with PD starts to experience drops or fluctuations in BP, it’s not always clear who should address these issues: the neurologist, the primary care doctor, or the cardiologist?

The speaker, Dr. Albert Hung, is a neurologist at Harvard. He pointed out that it is often when going about one’s day-to-day activities that BP problems are most noticeable, not necessarily when one goes into the clinic for an appointment. Thus, it is a topic that is particularly relevant today when many are sheltering at home due to the Covid-19 pandemic.

He started with a discussion of the factors that regulate BP:

  1. Heart: Cardiac output, the ability of your heart to pump blood throughout your body.
  2. Blood vessels: Our blood vessels are not just pipes; they also contain muscle tissue and nerves (baroreflexes) that allow them to participate in BP regulation by dilating or contracting in response to communication from the brain.
  3. Blood volume: The amount of fluid we have circulating in our body is critical to maintaining BP. If you don’t have enough blood, such as from blood loss or dehydration, no matter how strong your heart is or how much your blood vessels contract to try to compensate, your BP will eventually drop.

When your BP is checked, whether at home or at the doctor’s office, all these factors work together to determine whether the BP reading is a little high, normal, or a little low.

The Autonomic Nervous System

Sometimes called the “involuntary” nervous system, this is the part of the nervous system that manages certain bodily functions automatically, without your being aware. There are 2 main “flavors” of the autonomic nervous system:

  1. The sympathetic nervous system – Involved in the “fight or flight” response
    1. Increases heart rate and strength of heart contractions
    2. Widens airways
    3. Induces sweating
    4. Causes your pupils to dilate
  2. The parasympathetic nervous system – the “rest and digest” functions
    1. Controls bowels and bladder
    2. Slows heart rate and lowers BP
    3. Regulates erectile function

Orthostatic hypotension

Ordinarily, our body responds to whatever we are doing – running, walking, lying down, or sitting – and is able to maintain a nice, steady blood pressure within a normal range. If your BP starts to creep up and is high most of the time, then your doctor might diagnose you with hypertension – high BP – and possibly put you on medication to lower it.

However, in Parkinson’s disease, the most common BP issue is actually low BP, or hypotension. This particularly occurs when the individual is standing upright, which is called orthostatic hypotension. Orthostatic hypotension (OH) is defined as a fall in BP associated with standing:

  • Systolic BP drops at least 20 mmHg or more
  • Diastolic BP drops at least 10 mmHg or more

So a person whose BP is generally 130/70 might experience a drop when they stand up down to 110/60, or even lower. (130 is the systolic BP and 70 is the diastolic BP.)

OH is largely a consequence of gravity: when you are upright, your blood tends to go to your legs, and your circulatory system has to work harder to keep it moving against gravity. This is why some people who work on their feet all day may have swelling in their feet or ankles by the end of the day.

Some people experience symptoms (are symptomatic) when their BP drops, while others are asymptomatic and can’t even tell. Common symptoms of OH include:

  • Lightheadedness or dizziness
  • Weakness
  • Fainting
  • Difficulty thinking (especially in older individuals)

When OH causes symptoms, it is especially worrisome.

OH can be neurogenic – caused by changes in the brain, such as in PD – or non-neurogenic, caused by other issues. Causes of each include:

  • Neurogenic OH:
    • Parkinson’s disease
    • Other parkinsonism, such as multiple system atrophy, dementia with Lewy bodies, or pure autonomic failure
    • Small fiber/autonomic neuropathies
  • Non-neurogenic OH:
    • Medications
    • Dehydration
    • Fever
    • Cardiac disease
    • Chronic illness with deconditioning

OH is quite common in PD, possibly affecting up to 30% of individuals with PD in some studies. OH becomes more likely as the disease advances, but in some people, it can occur early on as well. PD often causes OH, however, the dopaminergic medications used to treat PD can also lower BP, contributing to or triggering episodes of OH. This can lead to challenging dilemmas in treatment decisions.

In many ways, the motor symptoms that allow for diagnosis of PD are just the tip of the iceberg; the changes in the brain have already spread to many areas that impact other aspects beyond motor function, such as autonomic function, which may not be as apparent or visible. Additionally, many of the symptoms down below the “tip” of the iceberg – such as autonomic dysfunction, mood changes, or sleep problems – may not respond to medication as readily as motor symptoms like tremor or walking.

Am I having neurogenic OH?

Below are some screening questions you can ask yourself or your loved one while at home, to determine whether you may be having neurogenic OH.

  1. Have you fainted/blacked out recently?
  2. Do you feel dizzy or lightheaded upon standing?
  3. Do you have vision disturbances when standing?
  4. Do you have difficulty breathing while standing?
  5. Do you have leg buckling or leg weakness when standing?
  6. Do you ever experience neck pain or aching (“coat hanger pain”) when standing?
  7. Do the above symptoms improve or disappear when you sit or lay down?
  8. Are the above symptoms worse in the morning or after meals?
  9. Have you experienced a fall recently?
  10. Are there any other symptoms you commonly experience when you stand up or within 3-5 minutes of standing, and that get better when you sit or lay down?

What can aggravate neurogenic OH?

  • Alcohol
  • Heat exposure, whether due to weather or a hot tub / hot shower
  • Carbohydrate-heavy meals
  • Prolonged sitting or lying down
  • Dehydration
  • Physical exertion
  • Straining (during urination or bowel movement)


How is neurogenic OH diagnosed?

You may have a suspicion that you are experiencing nOH at home, but your doctor will still need to follow the diagnostic process to determine if that is actually what is happening to you. I In most clinics, your BP and heart rate (HR) vital signs will be checked at the beginning of the appointment. However, most clinics will only check them once, while you are sitting down. Someone who has OH may have normal vital signs when seated.

If you suspect that you may be experiencing OH, you may need to ask the medical assistant or the doctor to check what is called orthostatic vitals – to check your BP again after you have been standing for a few minutes and see if it drops significantly from the first measurement when you were seated.

You can also check these measurements on your own, at home, which can be even more informative. BP fluctuates under normal circumstances throughout the day. Electronic BP cuffs can be purchased from most drugs stores or ordered from the manufacturer, though they are not cheap, and often cost at least $50.

What your doctor is looking for is a drop in the BP when you have been standing for a few minutes. Usually, the heart rate remains the same. If the heart rate goes up as the heart tries to compensate for the drop in BP, this suggests that you may be dehydrated – you should try to drink more fluids!

Once it is clear that OH is present, you may need to reduce or stop medications that cause OH, if appropriate. Many people are on anti-hypertensive medications to lower the BP if they have had issues with high BP in the past; this medication may need to be lowered or stopped if you are experiencing OH now.

Your doctor may also decide to have you undergo further testing, such as an echocardiogram, an electrocardiogram (EKG), and blood tests, to make sure your heart is functioning normally. If all of that testing doesn’t show a clear cause of your OH, your doctor may also consider specialty testing, such as autonomic function testing that uses a tilt table to assess your BP stability, or 24-hour BP monitoring.

How to manage neurogenic OH?

  1. Modify or remove medications that can cause neurogenic OH
  2. Non-pharmacologic measures
  3. Pharmacologic measures
  4. Combination pharmacologic measures

Modify or remove medications that cause OH: 

  • Anti-hypertensive agents like beta blockers, ACE inhibitors, calcium channel blockers, etc.
  • Diuretics to get rid of extra fluid, such as Lasix.
  • Dopaminergic agents, such as levodopa or dopamine agonists (Mirapex, Neupro, or Requip).
  • Alpha-1 adrenergic blockers, used to treat benign prostatic hyperplasia.
  • Medications for erectile dysfunction, such as Viagra.
  • Antidepressants, such as amitriptyline, nortriptyline, and imipramine.

You may have noticed (C), dopaminergic agents! Frustratingly, some of the medications used to treat Parkinson’s disease (PD) can also contribute to drops in BP. Often, it is necessary to reduce how much of these medications you are taking, if you are experiencing symptoms of neurogenic OH. Sometimes, it can be a balancing act.

There are some measures to combat neurogenic OH that do not involve medication changes. These are sometimes called “conservative measures” or non-pharmacologic measures.

  • Hydration, hydration, hydration!
    • Drink a minimum of 64 oz (2 liters) of water daily.  
    • If you are having an OH episode, drink 2 cups of water within 5 minutes as this may help to boost your BP for an hour or two.
  • Increase salt intake! Many people avoid salt as they get older, but your body actually needs salt to hold onto enough water to maintain a healthy BP.
    • Add 1-2 teaspoons of salt to your diet per day.
    • Or take salt tablets (0.5 to 1 gram NaCl) with meals.
    • Be careful if you are at risk for fluid retention or heart failure! In that case, check with your cardiologist first.
  • Physical maneuvers to counter OH, particularly if you are in a situation, such as waiting in line at the grocery store, where you can’t sit down right away. Sitting down immediately is the best option!
    • Stand up on your toes or cross your legs while standing; this helps the blood flow return from your legs to the rest of your body. 
    • Lean forward and rest your hands on your knees.
    • Put one leg up, such as on a chair.
    • Squat on both legs.
  • Compression garments: the idea is to help squeeze the blood to return to your heart, so it does not pool in your legs. These garments can be challenging to get on and may be uncomfortable, but some find them to be helpful in avoiding more medication.
    • Compression stockings – waist-high are most effective, followed by thigh-high. Knee-high are generally not effective.
    • Abdominal binder – similar to a girdle.

Pharmacologic (drug) measures

  1. Fludrocortisone (Florinef)
    1. Works on your kidneys to promote salt and water retention.
    2. Side effects: supine hypertension (spikes in BP when laying down), low potassium, and swelling.
  2. Midodrine
    1. Causes blood vessel constriction. Can sometimes be dosed in conjunction with levodopa to mitigate drops in BP.
    2. Typically 1-3 doses a day. Kicks in after about 30-60 minutes and lasts 2-4 hours.
    3. Avoid taking too close to bedtime or before laying down.
  3. Pyridostigmine (Mestinon)
    1. Enhances neurotransmission at pressure-sensing synapses
    2. May be best for less severe OH and is less likely to cause supine hypertension (spikes in BP when you lay down)
    3. Side effects: abdominal cramps, diarrhea, drooling, excessive sweating
  4. Droxidopa (Northera)
    1. Causes blood vessels to constrict
    2. Avoid taking too close to bedtime or before lying down

Combination pharmacologic measures

Each of the drugs listed above works in a different manner. Sometimes your doctor may have you take more than one of them, which may address the problem from different angles, yielding better results for some people.

Post-prandial hypotension

An important concept to be aware of is post-prandial hypotension – a drop in BP after eating a large meal. When you eat a lot at once, your body responds by diverting blood from the rest of your body to your digestive tract, to help process the food. But this can decrease BP to the rest of your body during that time, causing your overall BP to drop. This can occur particularly with alcohol or with meals rich in carbohydrates. Some people may feel faint or weak even just sitting at the dinner table. For an individual who is also prone to orthostatic hypotension, this can lead to very dangerous drops in BP when getting up from the table after a large meal, potentially triggering fainting and falls.

To manage this problem, try the following:

  • Eat smaller, more frequent meals rather than one large meal.
  • Avoid alcohol with meals.
  • Drink several cups of water quickly, either before or during the meal.
  • Avoid taking your PD medications too close to meals, as this can contribute to low BP.

Supine hypertension

The speaker talked mostly about the dangers of low BP in those with PD, but he also wanted to address supine hypertension – a significant rise in BP that can occur when laying down. The same dysfunction in the autonomic system that can cause neurogenic OH can also cause supine hypertension. Complicating matters, the medications used to treat neurogenic OH can worsen supine hypertension. Symptoms include headache and flushing.

Strategies to manage supine hypertension include:

  • After taking medication for your OH, avoid lying down for at least 3-4 hours.
  • Sleep with the head of the bed elevated. This also reduces nighttime urination.  
  • A short-acting anti-hypertensive medication may be necessary during the day or overnight to lower the BP and prevent hypertension while lying down.

Main takeaways:

  1. Fluctuations in BP are common in Parkinson’s disease.
  2. These are due to the underling disease but can also be exacerbated by PD medications.
  3. It is important to recognize symptoms associated with orthostatic hypotension.
  4. A combination of pharmacologic and non-pharmacologic strategies may be helpful.
  5. Supine hypertension can also occur in PD, affecting lifestyle and complicating management.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Question & Answer Session

Q: For someone who has been experiencing PD-related OH and supine hypertension for years, are they at higher risk for stroke or heart attack?

A: When we think about BP issues in someone with PD, it’s important to think about them not just in the context of their neurologic disease. If they have a history of cardiac disease, that’s important to take into account when evaluating their risks from OH and supine hypertension.  It may affect how your doctor tries to manage their BP issues. It is important to focus on the symptoms that are most bothersome and present the largest impact to quality of life.

Q: My husband has PD and struggles with low BP in the mornings, often fainting. What should we do?

A: Have you tried the conservative measures mentioned above? If you have, and he is still fainting regularly, then it’s time to speak with his doctor and be more aggressive in treating this, likely by adding some medication.

Q: If Sinemet (levodopa) seems to be causing low BP, what else can be done?

A: We all love Sinemet in the right context for its ability to improve motor function in PD! But sometimes it’s a balancing act. The first thing he would do is see if the Sinemet can be reduced without substantially impacting your ability to move. However, for those who are working with a movement disorders specialist, there is probably a reason that you ended up at your current level of Sinemet: the lower doses likely weren’t controlling your motor symptoms adequately.

If that’s the case, then using the other strategies – conservative measures and maybe adding a medication or two to support BP – is likely the best approach.

Q: My diastolic BP (the bottom number) tends to be low, around 60, whether I am standing or sitting. How do I manage this?

A: Everybody’s diastolic BP is different; this may be quite normal for you. When we are trying to treat the symptoms of neurogenic OH, we focus on treating the symptoms – how you feel – not the BP numbers. Not everyone experiences symptoms even if their BP numbers fluctuate; for those who are asymptomatic, we don’t need to treat it.

His advice to patients is, if you’re having these symptoms, have a BP cuff at home to check occasionally when you are feeling off. But don’t be overly compulsive about checking your BP over and over again throughout the day; this will only lead to anxiety, which can make your BP higher! Follow whatever guidelines your doctor has given you for when to measure your BP, and otherwise, focus on going about your day.

Caring.com’s List of the 8 Best Medical Alert Systems

Caring.com occasionally evaluates the best medical alert systems.  This summer, they took a look at eight systems and said that they were the “best.”  Here’s an excerpt from their blog post:

At a Glance: The 8 Best Medical Alert Systems

Bay Alarm Medical – Best for Customer Service
MobileHelp – Best for Those Without a Landline
Medical Guardian – Best for Premium Features
LifeFone – Best Standalone Mobile App
Life Alert – Best for Industry Experience
Medical Care Alert – Best for EMT/EMD Certified Monitoring
QMedic – Best for Two-Way Communication
RescueTouch – Best for Two-Way Communication

Our family used the Philips Lifeline, which has fallen off the Caring.com list the last couple of years.

You can see the full blog post here:

www.caring.com/best-medical-alert-systems/

Robin