“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.

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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.

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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

CalHOPE offers a mental health call-line for Californians struggling with COVID-19

California HOPE (CalHOPE), a program run by the California Department of Health Care Services, delivers crisis support for communities impacted by a national disaster, such as the COVID-19 pandemic.  CalHOPE builds community resiliency and helps people recover from disasters through free outreach, crisis counseling, and support services.  For California residents, CalHOPE offers a call-line —  (833) 317-HOPE (4673) — to talk about your struggles and get emotional support from someone who has persevered through tough situations.

“Protecting Your Mental Health During COVID-19” – Notes from a caregiver chat

In June, the Parkinson’s Foundation (parkinson.org) hosted an event called “Caregiver Coffee Chat: Protecting Your Mental Health During COVID-19.”

This event featured Martha Anne Tudor, MEd, NCC, LAPC, who discusses how to protect your mental health while sheltering in place (or, slowly rejoining society). Her focus is on caregivers; however, the suggestions in this webinar apply to all of us. This chat contains one comment that is specific to Parkinson’s Disease.

Here’s an excerpt from the introductory remarks:

Most of the news right now isn’t good and there is a lot of uncertainty. We know about the human brain that we don’t do well with uncertainty. Our response is anxiety, worry, stress, and alarm. These initial reactions have been protective in history and have helped us survive. But with the current situation, with so much uncertainty, and no clear end in sight, it is easy to get stuck, and that can be damaging to our physical health, emotional health, immune systems and relationships. There are ways we can take control over how we respond to the things that are happening outside of our control. Uncertainty is always with us, and there are things we can do to not only survive but also come out more resilient.

The speaker encourages us to ask six questions of ourselves each day. She suggested that these are “quarantine-time” questions. However, these questions seem appropriate for every day, with or without a pandemic. The questions are: [Editor’s note: question #6 was re-worded.]

1. What am I grateful for today?
2. Who am I checking in on, or who am I connecting with today?
3. What expectations of normal am I letting go of today?
4. How am I getting outside today?
5. How am I moving my body today?
6. How am I cultivating, creating or inviting beauty into my life today?

The archived recording of this webinar can be found on the Parkinson’s Foundation’s YouTube channel here:  https://youtu.be/6TTVenqalqo

Friend of Brain Support Network, Adrian Quintero, took notes during the caregiver chat and has shared them.

Robin

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“Caregiver Coffee Chat: Protecting Your Mental Health During COVID-19″
Hosted by Parkinson’s Foundation
June 4th, 2020
Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach


Martha Anne Tudor, MEd, NCC, LAPC, is a Mental Health Counselor & Outreach Coordinator Movement and Memory Disorders Program, Department of Neurology, Augusta University/Medical College of Georgia.

Most of the news right now isn’t good and there is a lot of uncertainty. We know about the human brain that we don’t do well with uncertainty. Our response is anxiety, worry, stress, and alarm. These initial reactions have been protective in history and have helped us survive. But with the current situation, with so much uncertainty, and no clear end in sight, it is easy to get stuck, and that can be damaging to our physical health, emotional health, immune systems and relationships.

There are ways we can take control over how we respond to the things that are happening outside of our control. Uncertainty is always with us, and there are things we can do to not only survive but also come out more resilient.

Daily Questions

Martha Anne calls them “Quarantine Daily Questions,” although they are good anytime:

1. What am I grateful for today?

(Participants submit answers over chat. Many people said health of family, many others said nice weather)

We remember in times like this that our attitude and gratitude are not challenges, but they are choices we make.

There is research that shows an attitude of gratitude with improved immune systems. It can help to keep a journal and write 3 things at the end of the day that you’re thankful for.  These can be small things (a good movie, birds chirping, good cup of coffee). In a year you have 1,000 things you are thankful for. This can be a good resource when you are going through a challenging time. Many of these will probably still be true.

Some people have a habit of sharing over dinner with loved ones what went right that day. These types of things we really train ourselves, and the more we look for things to be grateful for, the more it becomes a habit to see it. We might have to be particularly proactive with this right now, as we are bombarded with stressful and scary information.

We need to remember there is good to help balance out the negativity. Another way we can do that is limit our exposure to the media, so we don’t dwell on what is going wrong. Perhaps checking news only once or twice a day, and filling the day with things like activities you enjoy, healing music, and positive relationships.

2. Who am I checking in on, or who am I connecting with today?

(Many participants said a family member, and others said a fitness buddy)

There are multiple levels of benefit to fitness programs such as boxing, as there is also an emotional/ social component to them as well (many programs are happening virtually right now).

Perhaps there is someone in your life who lives alone, or may be more isolated than others, that you can check in on. Isolation is of course so profound now. There aren’t in person fitness programs, church services, or support groups right now as we had before. Connecting with someone might be a phone call or a note you write. It’s important to remind ourselves we are not alone during this time; we are actually very much in it together.

Feelings of isolation are associated with negative health effects such as increased stress, decreased immune systems, etc.

3. What expectations of normal am I letting go of today?

(Participants said attending community events, sticking with schedules, shopping without anxiety)

There is very little that is normal right now. Getting groceries, exercising, even attending doctor appointments are all different these days. It’s important to remember this is probably not the best time to put a lot of pressure on ourselves to learn a new language, or tackle a big project. We are so bombarded with information that is unsettling and worrisome. There are many questions we don’t have answers to, and our nervous systems can barely keep up with what the latest information is about health, finances, and employment. This is a good time to practice some self-compassion, as it is a very stressful time. It is a lot to just wake up, be, and get through the day right now.

We do tend to do better when we are sticking to a schedule. This might be different right now, but it can help to try to get up at the same time everyday, as well as eat meals, exercise and go to bed around the same time everyday. Having some kind of routine can help reinforce a sense of security and control.

There are more options right now to participate in activities that don’t involve leaving your home.

4. How am I getting outside today?

(Participants said taking walks, taking a drive, doing yard work)

Research shows just getting outside/ being outside is so healthy and restorative. There is new research that shows just being around the color green outside is very soothing, and associated with lowering stress levels and being very comforting. The sounds of nature outside, such as birds, wind, stream, help us focus in the here and now, and step back from worry of tomorrow.

This touches on the mindfulness exercises that we know are so helpful. Parkinson.org hosts a Mindfulness Monday every Monday. These are techniques that you can carry with you anywhere you are.

5. How am I moving my body today?

(Participants said taking walks, walking the dog, virtual exercise, cleaning)

There is no way to count the research that we already have about the health benefits of moving your body. It doesn’t have to be a lot. 30 minutes a day is associated with optimum benefits. This could be chair exercises, a walk around the neighborhood, walking a dog (which can also help the isolation we may feel, as a conversation starter with people outdoors). Moving the body is associated with improved immune system and greater physical and psychological resilience. Really all areas of our health are positively impacted, and it may be one of the most powerful tools we have to take control of our own mental health.

6. How are you cultivating, creating or inviting beauty into your life today?

(Participants said gardening, spending time with a loved one)

You may notice many of these touch upon multiple areas. For example, gardening can be cultivating beauty, getting outside, and moving your body. Getting our hands in the dirt and watching something grow and bloom can be very therapeutic and counteract messages of doom and hopelessness.

Right now there are ways to virtually participate in museum tours, listen to opera or other musical performances, even visit parks and zoos, all through a screen.

Questions from participants

  • My mother lives with me and relies on me solely for entertainment and interaction and won’t do things on her own. I also have two grandchildren I watch almost everyday. How do I juggle my life, especially in these times?

Many caregivers are finding themselves with these questions. Home health has ceased or diminished, we can’t attend support groups or spiritual gatherings or other outlets we used to have. This caregiver probably can’t make her mom chose anything different, but there are things the caregiver can make sure she is filling her own bucket. We cannot give out of an empty bucket. This caregiver should make sure she is getting some breaks, has people she can talk to, has some time she can get away, and that she is getting enough sleep and eating right, thinking of her own gratitude. Maybe there is something the mom and the kids can do together, a joint project like painting or growing plants.

  • In terms of staying safe during these times, what kind of questions should someone be asking of a person to come into the home for caregiving support?

First off, it’s important to get the okay from your health care provider. No two people are exactly the same, and your provider will know more your particular risk level category. Next, find out from the organization/ agency what they are doing to take precautions. You can share this with your doctor to make sure this sounds reasonable. Also important is your own comfort level. Some people are more comfortable with no one coming in right now, while others might be more comfortable with what they were doing prior to the pandemic. The CDC guidelines are important to adhere to. We all have to take the guidelines, adhere to them, look at the risks, and find a way to live our lives, and decide with our loved ones how we are going to do that. When we feel like we have no choice, that can be profoundly depressing. Even in a circumstance like this, we all have choices.

  • When you’re with someone all the time now, when you had breaks before, how do you manage the frustration that can come up?

This question doesn’t just apply to caregivers and those receiving care! There are parents homeschooling and couples together who are also asking this question. Being able to recognize and acknowledge the feelings we are having (anger, frustration, impatience) is a step in the right direction.

How can I handle these feelings? Taking a moment to step back, step away, practice deep breathing, going outside, all the self-regulation behaviors can really help here. There is the 4-7-8 breath which is breathe in for a count of 4, hold for a count of 7, and breathe out for a count of 8 (exhaling longer than inhaling). These can be ways to give our emotional brain a moment, which can help us respond instead of react.

When it comes to caregivers, they can often forget that they have needs that deserve care and attention too. Caregiver strain is real and can be devastating. For having conversations with people we are caring for, Martha Anne recommends coming from a place of respect, honor, love, and kindness. She says to hold the point of view of being on a team and a journey together, with both people needing to be able to go the distance. Often times the person being cared for feels guilt as well, and concern for how the caregiver is doing.

  • What are some things a care partner needs to look out for in regards to their own mental health?

There is an excellent care partner summit that Parkinson’s Foundation hosted in May that is now available to view online and is a great resource (https://www.parkinson.org/Summit).

Ideally, as part of the plan from the beginning, care partners would add in their own support being part of the picture. A lot of times care partners think they can manage on their own, without having to ask for help. Asking for help is a wise decision.  

As for what to look out for, feelings of guilt, feeling ashamed, feeling guilty for feeling guilty, being short and irritated with the person receiving care, and examining self-talk. With Parkinson’s Disease, there can be symptoms that are extremely hard to deal with such as hallucinations, or the person becoming belligerent. The more you can get support and keep yourself healthy and strong, the more you can see what is the disorder/ pain and what is your loved one. We all need someone to talk to. This doesn’t have to be counseling, it can be good relationships, a neighbor, or spiritual mentor. Counseling is a good idea when you find yourself repeating behaviors you don’t really understand and that are causing more problems than they are helping.

“How to Build Resilience While Living with Parkinson’s” or other disorders – webinar notes

With the pandemic, I’ve been reviewing materials received in the past on the topic of resilience. This blog post is about a webinar in January 2019 on building resilience while living with Parkinson’s Disease (PD). The webinar featured the wonderful palliative care chaplain at UCSF, Judy Long. Though the webinar’s title includes “Parkinson’s,” there is nothing in Ms. Long’s presentation that is specific to PD. Several of the questions are about coping with PD but these questions (and their answers) relate to coping with any neurological condition.

In this webinar, Ms. Long notes that it is only when we notice feeling upset or threatened that we can make a choice about how to respond.  If we don’t notice how we feel we have little hope of making a choice of how to respond and will only react instinctively.  

Through a series of explanations and exercises, Ms. Long presents four obstacles to resilience and tools to overcome each of them through intention and practice.

Obstacles to resilience, or what gets in our way of bouncing back the way we want to:

  1. Not noticing how we feel.
  2. Believing the current circumstances don’t make sense, shouldn’t be happening or are meaningless
  3. Believing I’m all alone and nobody else understands, or feeling isolated
  4. Believing you are helpless and there is no skillful action you can take to change the situation

What can we do to counter these obstacles? There is an opposite to each of these obstacles.

  1. The opposite of meaninglessness is what matters to you most or purposeful positive intentions.
  2. The opposite of isolation is authentic connection with others.
  3. The opposite of helplessness is realizing the choices you have.

Ms. Long offers exercises to overcome these obstacles.

The speaker makes some observations about caregivers:

Even though your inclination may be to handle difficult situations alone, if you do that all the time it is stressful both emotionally and physically and, therefore, unhealthy.  Caregivers tend to fall into this category.

Even when [the caregiving] is difficult and we feel exhausted, it makes a difference to our energy level to remember why we are caring and that it is based on love.  Burnout includes meaninglessness, isolation and helplessness…

Brain Support Network volunteer Denise Dagan listened to the webinar back in January 2019, and shared her notes. (Unfortunately the webinar recording is no longer available online.)

Robin

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How to Build Resilience While Living with Parkinson’s
Davis Phinney Foundation
January 15, 2019
Notes by Denise Dagan
Speaker: Judy Long, outpatient palliative care chaplain at UCSF


We all have resilience but we can always strengthen our resilience so we can sustain demands of caregiving or other stresses.

When we feel something is difficult there can be a sense that something is threatening us, like pain, exhaustion or other discomfort.  We may feel as though we need to fight the threat.  This is due to the fight or flight response, which is instinctive. The alternative is to freeze and not do anything.  There may be better responses that will help us bounce back to a more normal state, as opposed to feeling threatened.

A prime skill that will precede everything else, if you can notice that you feel threatened or upset, that noticing is the most important thing you can do because it allows you to make a choice about how to respond.  If you don’t notice how you feel you have little hope of making a choice of how to respond and will only react instinctively.

Obstacles to resilience, or what gets in our way of bouncing back the way we want to:
1. Not noticing how we feel.
2. Believing the current circumstances don’t make sense, shouldn’t be happening or are meaningless
3. Believing I’m all alone and nobody else understands, or feeling isolated
4. Believing you are helpless and there is no skillful action you can take to change the situation

What can we do to counter these obstacles? There is an opposite to each of these obstacles.
1. The opposite of meaninglessness is what matters to you most or purposeful positive intentions.
2. The opposite of isolation is authentic connection with others.
3. The opposite of helplessness is realizing the choices you have.  

Overcoming meaninglessness is positive intention — positive intentions for the good of others can be values you hold dear, like kindness, patience or love (giving and receiving). The most important thing to you may be your family or courage. There are many options, but it should make you feel positive and that you care about the wellbeing of others.

Exercise: Choose an intention each day.  Try this exercise more than one day to see how it works for you. In the morning, before you rise from bed, choose an intention and try to remember that intention throughout the day.  When you’re speaking with someone and begin to feel stressed (annoyed, etc.) use that as a cue that employ your intention.  See if that intention changes the way you respond to that person and in other situations throughout the day. At bedtime review if/when you remembered your intention throughout the day and how it improved the way your interacted with others.  Decide if you will keep with the same intention the next day or try another (kindness, patience, courage, etc.)

Exercise: Think of an interaction that will happen in the next day that will be challenging and pick a specific intention for that interaction that is positive.  If you hope not to get angry or annoyed, turn it around and intend for the other person to feel loved or that you are being patient, etc.

Overcoming isolation is authentic connection with others — connection is protection. This is true from the time of cavemen.  If we hadn’t connected as early humans, we wouldn’t have survived to modern times.

Many of us want to be alone when we are upset.  Sometimes, we need some alone time to process what is going on, how we feel about it and how to respond.
Even though your inclination may be to handle difficult situations alone, if you do that all the time it is stressful both emotionally and physically and, therefore, unhealthy.  Caregivers tend to fall into this category.

Exercise: Notice if you are going it alone too much of the time and make the choice to connect with someone else. Think about who you can bear talk to even though you are upset and make the effort to reach out to them for input and support.

Overcoming helplessness is to make a skillful choice
. Ms. Long tells the story of a concentration camp survivor who emerged whole and developed a psychological theory of meaning.  Everything can be taken from a person excepting the freedom to choose one’s own attitude in any given set if circumstances and the capacity to act even.

Skillful choices you can make are positive intentions, connecting with others or this grounding exercise.

The psychology of positive thoughts is that even when we have a positive series of negative thoughts, we can overcome them with a series of positive thoughts. The benefits of positive thoughts is both emotional and physical.

Exercise: Toward the end of your day think back over the things you were grateful for.  Try to come up with three things.  Name it and say in your mind specifically what you are grateful for.  Jot down on a piece of paper each thing you are grateful for and why.  Go to sleep.  Repeat this exercise for at least two weeks.  At the end of that time reflect back and see if you notice positive things throughout your day, not just at night.  Where we place our intention is what we notice and how we act.

Example: I am thankful for my hot shower this morning.  I am grateful for the massaging way the water hits my back.

Example: I like my hot oatmeal this morning.  It was tan, lumpy, hot, sweet and lumpy.

Example: I am grateful for my husband/child.  Be specific:  My daughter gave me a big hug when I was feeling sad. I was grateful my husband brought the trash can behind the house.

Grounding Exercise: If you know thinking about your breath makes you nervous, you may want to skip this exercise. Extensively studies and found to bring humans into a calmer state of mind when our nervous system is stressed.
Direct your imagination to your heart area.  Place your hand over your heart to enhance the experience. On the in breath, notice that your chest expands.  On the out breath, notice that your chest deflates.   Pretend you can breathe in directly into your heart, as opposed to your lungs.
If your mind wanders, just notice that has happened and bring focus back to your heart and resume breathing into and out of your heart.

Questions-and-Answers

Q. I have early PD and my husband/care partner has early Alzheimers.  We don’t have close family and I have always cared for him.  We are in our mid-70s.  I am so tired.

A. People in early stages of memory loss can remain in the stage of mild cognitive impairment for quite some time.  The best way to encourage that is to have him continue to do as much for himself as possible, keep socially engaged, maintain your physical closeness and foster an intent of patience and care for each other.  When you do something that is beneficial for someone you care about you benefit, yourself, emotionally.  Part of the caregiving instinct comes from evolution of tribal and parental caregiving.  Even when it is difficult and we feel exhausted, it makes a difference to our energy level to remember why we are caring and that it is based on love.  Burnout includes meaninglessness, isolation and helplessness so these exercises counter burnout.

Q. How do you deal with the reality that PD is your future and will only get harder?

A. I am, by nature, someone who likes to look issues directly in its face.  A little information gathering helps me prepare and realize how it will get worse so you can prepare and plan ahead.  That may include some home remodel or relocation, for example.  Taking action to put steps in place can reduce stress. Alternatively, using the tips from this webinar will help you get through each day and life’s others heartbreaks that have nothing to do with PD.

Q. What about the role of a PD care partner who is more concerned with the illness than the person with PD?

A. My inclination is to meet with one, the other, or both partners one-on-one.  Not being in the room with these people to have a conversation about it, I will share how emotions work.  We need to understand how to meet difficult emotions.  It is hard to be around someone who is experiencing difficult emotions.  Try transparency: at a time when you don’t feel upset about this situation, try telling your partner that you would like to share with them at some point how you feel about having PD and have a conversation about it.

Some people find gathering information is useful.  What you do with that information can be practical and helpful and make them feel in control.  It can also be a way to avoid dealing with the emotions the other person is dealing with.

Q. As a care partner to my friend, I notice he/she (has had PD for 11 years) becomes childlike and needy when I’m around, but not so much when his aides are with him and I am not.  This co-dependence is exhausting.  How do I help him learn to be self sufficient?

A. Think about how you can tell the truth in a way that is kind.  You might say to your friend that you’d like to see if he/she might be able to do ___ on his/her own.

Q. What if the person with PD wants to talk about PD all the time and the care partner does not?

A. Try to redirect toward areas of resilience the person with PD can build for themselves.  Suggest some of the exercises in this webinar.  Do them together. Empathize with their feelings underlying their desire to talk about PD, but redirect to resilient skills or social activities to help them feel more emotionally strong and more healthy.  The gratitude practice can be the most beneficial for everyone, including those with PD.