2021 Brain Support Network Caregiver-only Support Group Meeting Dates

Since 2004 (17 years!), we have convened nine support group meetings each year for caregivers of those with Lewy body dementia (LBD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and atypical parkinsonism.

These are separate — yet simultaneous — meetings for each disorder, though the PSP and CBD groups are usually together. Among all of three simultaneous groups, attendance is 20-30 total.  We welcome family/friend caregivers living in Northern or Central California.  Contact us if you’d like to be added to the meeting reminder email list.

Of course during the COVID-19 pandemic, our groups are meeting virtually.  Most participate with video, but it is perfectly fine to join by phone-only.

The discussion is led by caregivers who have lost their family members to these disorders. In most cases, the family member donated his/her brain and the diagnosis has been confirmed. (Brain Support Network can assist your family in making brain donation arrangements.) Discussion leaders include:

  • LBD: Dianne, Sharon, Alexa, Cristine, and Lynn
  • MSA: Candy, Barbara, Karen, Jan, and Doug
  • PSP: Cristina, JD, and Robin
  • CBD: Dick, Mindy, and Mark

These caregiver-only support group meetings are held on Sundays from 5pm to 7pm. The dates for our 2021 meetings are:

  1. January 24
  2. March 14
  3. April 18
  4. June 6
  5. July 18
  6. August 29
  7. October 3
  8. November 7
  9. December 5

In selecting these dates, we have avoided as many cultural events, sporting events, and holidays as possible.

Please put these caregiver-only support group meeting dates on your 2021 calendars now.  An email requesting RSVPs will be sent out a week or so before each meeting. RSVPs are always due by noon on the Saturday (one day) before each meeting.

All family/friend caregivers are invited:  primary, secondary, those giving hands-on care, and those managing care.  Newcomers, casual visitors, and longtime attendees are all welcome!  Former caregivers–those whose loved ones have already passed away–regularly attend.  Former caregivers have been through it all and are invaluable resources to those learning to cope.  (Our group is NOT intended for professional caregivers.)

If you are an active caregiver with a loved one at home, consider asking for a “respite care grant” from your county’s agency on aging or from your local caregiver resource center (see caregiver.org/californias-caregiver-resource-centers).  Such grants pay for a caregiver to be in your home while you attend support group meetings.  The Alzheimer’s Association (alz.org/norcal) also offers respite grants for those dealing with dementia.

We occasionally have guests.  Guests have included a family consultant from Family Caregiver Alliance, a board member of the Lewy Body Dementia Association, and a board member of CurePSP.

We have over 450 members now, with attendance of 20-30 at caregiver support group meetings (among the three simultaneous group meetings).  Roughly speaking, of the 450 members, 50% have an LBD connection, 30% have a PSP connection, 18% have an MSA connection, and 2% have a CBS/CBD connection or Atypical Parkinsonism connection.  (I believe we have the largest PSP, LBD, and MSA local support groups in the US.) If you have suggestions on how we can get the word out about our group, let me know!

We look forward to seeing you at some meetings in 2021!

By the way, if your family member with a neurological diagnosis of MSA, PSP or CBD would like to meet virtually with others, let us know.  We will try to arrange this.

The MSA Coalition 2nd Patient/Family Conference of 2020 (October 23-24)

The MSA Coalition is holding a second patient/family conference this year on October 23-24, 2020. This second conference is in conjunction with Dr. Thomas Chelimsky and the team at the Medical College of Wisconsin. The conference is free. Robin Riddle with Brain Support Network will be speaking about the value of MSA brain donation. Register for the event here.

“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: 


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.

Urinary dysfunction (urgency, frequency, nocturia) – webinar notes

In early June, the Parkinson and Movement Disorder (PMD) Alliance (pmdalliance.org) offered a webinar on urinary dysfunction in Parkinson’s disease (PD). The speaker was neuro-urologist Jalesh Panicker, MD, who specializes in urinary issues in people with neurologic disorders. While the focus was on urinary problems in PD, since the problems of urgency, frequency, and nighttime urination (nocturia) occur in the atypical parkinsonism disorders, we are posting the notes from the webinar here.

There was also a question-and-answer session following the webinar. Here’s an interesting question and answer:

Q: Is it better to train your bladder to hold a lot of urine, or to go to the bathroom more frequently as needed?

A: For someone with an overactive bladder (OAB), the bladder is often contracting, making you feel that you need to pee. In the early stages, you may have a bit of an urge, but there may also start to be a psychological element. Perhaps you were out at a social gathering and started to feel some urinary urgency, or you were out at dinner and had your first episode of incontinence. This can trigger you to become anxious and start proactively going to the bathroom more often than really necessary, to try to prevent feeling those urges. In relatively mild OAB, it is “mind over bladder,” so that you have more control.

This needs to be done gradually and gently, however; don’t try to hold your bladder for really long periods such as 4 or 5 hours. Instead, try to hold it just a bit longer than you feel like, gradually increasing to a point that seems more reasonable, such as voiding every couple hours.

Dr. Panicker mentioned three non-pharmacological treatments for overactive bladder. Here’s a list of those treatments and some sources for information about them:

This webinar was recorded and can be viewed on PMD Alliance’s YouTube page:


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

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

Urinary dysfunction in Parkinson’s disease – Webinar notes
Presented by PMD Alliance
June 1, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The webinar speaker, Dr. Jalesh Panicker, is a uro-neurology specialist with the National Hospital for Neurology in London. These are notes from his talk.

There are two sets of symptoms people can experience from the bladder:

  1. Storage symptoms: urgency, frequency, nocturia, and incontinence
  2. Voiding symptoms: hesitancy, straining, interrupted stream, and double voiding

Of these two, storage symptoms are easiest to recognize. Voiding symptoms are not that straightforward and often come on quite gradually over time. An individual might not even realize they are having a problem with voiding and failing to completely empty their bladder.

An important assessment is to undergo a routine, non-invasive bladder scan, using a handheld scanner that a nurse can use to check if there is still urine left in the bladder after the person has voided (this is called post-void residual). Like stagnant water that can attract insects, stagnant urine in your bladder can provide a breeding ground for bacteria, predisposing you to urinary tract infections. Additionally, if your bladder is already holding a significant amount of urine that is just sitting there, there isn’t much volume left to hold new urine you are making. This can contribute to urinary frequency as well.

Why do people with Parkinson’s Disease experience urinary problems?

In the past 15-20 years, urinary issues are increasingly recognized as being one of the most bothersome and common non-motor symptoms of Parkinson’s Disease (PD). In particular, nocturia (having to urinate several times during the night) and urinary urgency are most troubling. These symptoms tend to increase as PD progresses.

There are different causes of bladder problems, but there is a particular link between dopamine levels and bladder control. Dopamine in the frontal lobe seems to inhibit and suppress the bladder to keep it in check. When there is dopamine deficiency, this inhibition of the bladder is lifted, and one has to go to the bathroom more often. This is called overactive bladder (OAB). 

Those with PD may have other medical conditions as well that contribute to bladder problems:

  • Enlarged prostate, in men
  • Pedal edema (ankle swelling)
  • Diabetes mellitus
  • Congestive heart failure
  • Medications, such as diuretics (water tablets)
  • Sleep disturbances, such as sleep apnea
  • Cervical spondylosis and myelopathy

Getting up to pee during the night is not inherently a problem; most adults over a certain age will need to get up once a night. But in PD, sometimes an individual might have to get up more than 3 or 4 times in a night, severely disrupting their sleep. Additionally, sometimes a person might wake up for other reasons – such as their levodopa wearing off and causing discomfort – then decide to use the bathroom since they’re awake anyway. This is called a convenience void. Determining what is truly triggering the person to wake up at night is an important piece of the puzzle.

Patients who record the number of times they void during the day and night, as well as the volume of urine produced, show that not only is urinary frequency occurring – they are feeling that they need to void quite often – but also that the volume of urine (called urine output) they are voiding overnight is much higher than during the day. This is called nocturnal polyuria, or producing excessive amounts of urine during the night. Ordinarily, one should produce only a third of the total urine for the day at nighttime.

If a person with PD is complaining that they have to get up to urinate several times during the night, it can be important to determine whether they are having simple urinary frequency, or whether they are experiencing nocturnal polyuria and their body is producing more urine at night, driving the repeated cycles of waking to use the bathroom.

It is important to recognize if nocturnal polyuria is present, as there can be multiple different causes: blood pressure instability during the day, which is common in PD; sleep apnea; medications such as a diuretic; cardiac issues; excessive hydration during the day; and ankle swelling.

New onset incontinence

Urinary incontinence is the loss of bladder control, ranging from leakage when you cough or sneeze to failing to get to the toilet in time and having a significant accident. If someone starts experiencing incontinence abruptly, without prior urinary issues, the speaker starts to consider other possible causes besides their PD, which usually progresses slowly and gradually.

Other causes of new incontinence are often reversible:

  • Urinary tract infection (UTI): This may show distinct symptoms such as burning during urination, altered urine smell, or fever. However, in PD the individual often doesn’t notice a change despite a UTI being present.
  • Change in medications: For instance, adding an opioid medication for pain relief or a cholinesterase inhibitor used to treat cognitive changes.
  • Recent change in mobility: A fall or hip surgery could represent an alteration of normal mobility.
  • Constipation/stool impaction: This can put mechanical pressure on the urinary tract.

Assessing your bladder function

Your doctor has a number of different options for assessing your bladder. They may use a combination of the following:

  • Ask a few questions
  • Test your urine to see if an infection is present
  • Non-invasive bladder scan to see if your bladder is emptying completely when you void
  • Ask you to keep a diary at home to record:
    • When you pass urine and what volume (this can be measured with a “hat” that sits inside the toilet)
    • When you drink fluids and what volumes
  • Urodynamic tests that actually measure the urine stream in the clinic setting

General measures: Fluid intake

  • Keep a bladder diary
  • Generally recommend drinking 1.5 to 2 liters of water a day (6-8 glasses)
  • Reduce caffeine to less than 100 mg per day
  • Avoid substances that can irritate the bladder, like alcohol, citrus fruits, juices, and soda  

Bladder retraining and scheduling with timed voids can be helpful as well. Measures that improve toilet accessibility can also reduce the number of incidences of incontinence, such as installing a raised seat, grab bars, and pants that are easier to undo. A portable commode can be useful if there are mobility issues.

Pharmacologic treatment

The antimuscarinic drug family is available to help with bladder symptoms, and there is some evidence to demonstrate their safety and efficacy in those with PD. That said, they are not for everyone, and can cause side effects; it is important to have a thorough discussion with a provider who is familiar with PD in deciding which drug to try.

  • Trospium
  • Oxybutinin
  • Tolterodine
  • And others!

Another drug, Mirabegron (Myrbetriq), is a beta-3 receptor agonist and operates differently than the antimuscarinics to increase storage capacity and decrease the frequency of voiding.

Other treatment options

A relatively new but very safe and well-validated treatment for bladder dysfunction is Tibial Nerve Stimulation (TNS), in which tiny needles provide gentle electrical stimulation to a nerve that helps decrease urinary urgency, frequency, and incontinence via repeated sessions in the clinic.

Another option is clean intermittent self-catheterization, which can be a good option for some. Self-catheterization is preferable to maintain the person’s independence.

For others who are unable to perform intermittent catheterization, an indwelling catheter is needed, meaning it is surgically implanted. For those with neurologic disease who are increasingly disabled and experiencing cognitive impairment, a suprapubic catheter is typically the best option. This involves surgery to implant a permanent tube in the bladder out through the low belly.

Pelvic floor exercises done under the guidance of a specialized physical therapist and practiced on your own can help to strengthen and retrain the muscles associated with urination and defecation.

Others prefer to simply contain the urine, whether through absorbent briefs or pads. There are many products on the market.   

Main takeaways:

  • Urinary problems are common in PD
  • It can be very useful to check if the bladder is emptying completely or not
  • Treatments:
    • Check fluid intake and timing
    • Pelvic floor exercises
    • Medications: antimuscarinics, mirabegron
    • Electrical stimulation of nerves (TNS)
  • In some individuals, an indwelling catheter is helpful

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

Question & Answer Session

Q: Is it better to train your bladder to hold a lot of urine, or to go to the bathroom more frequently as needed?

A: For someone with an overactive bladder (OAB), the bladder is often contracting, making you feel that you need to pee. In the early stages, you may have a bit of an urge, but there may also start to be a psychological element. Perhaps you were out at a social gathering and started to feel some urinary urgency, or you were out at dinner and had your first episode of incontinence. This can trigger you to become anxious and start proactively going to the bathroom more often than really necessary, to try to prevent feeling those urges. In relatively mild OAB, it is “mind over bladder,” so that you have more control.

This needs to be done gradually and gently, however; don’t try to hold your bladder for really long periods such as 4 or 5 hours. Instead, try to hold it just a bit longer than you feel like, gradually increasing to a point that seems more reasonable, such as voiding every couple hours.

Q: Who is the best type of provider to manage these issues in someone with PD – a neurologist, or a urologist?

A: Unfortunately, not that many people straddle these two specialists like the speaker does. Some people see both types of specialists; you can encourage them to communicate with each other and collaborate about your care.

Q: How can I tell if constipation is contributing to my urinary issues?

A: The patient’s history of how many bowel movements they report having in a given day or week is usually the best indicator. But the bladder scan also represents a good opportunity to assess if constipation may be a contributing factor. When we scan the bladder, sometimes we see a shadow over the bladder that represents a loop of full bowel. When examining the belly, we can often feel if there is a lot of stool sitting there in the intestines.

Q: The penis has become quite small and difficult to hold onto, making it challenging to aim while peeing. Do you have any insight as to why this happens and what can be done?

A: This is a retraction of the penis that can happen. Over time, if we use the penis less and the tissue does not become erect, the tissue can shrink and become sort of buried in the scrotum. For individuals have a prominent foreskin, the penis can be difficult to locate inside the foreskin as well. Not much can be done in these situations, although if someone is not circumcised, it can be an option to undergo a circumcision, which will make the head of the penis more accessible.

His colleagues in France recommend taking a Viagra a day to maintain the tissue’s ability to become erect but there isn’t clear evidence for that, and it is not something he advises specifically for that purpose. Many with PD take medication to assist with erectile dysfunction, but it is not clear whether these would help for penile retraction as well. 

If there are reasons why circumcision is not the way forward, then one could also consider an indwelling suprapubic catheter to aid with voiding.

Q: We hear a lot about men’s urinary problems but not enough about women. Can uterine prolapse cause urinary problems in women?

A: Uterine prolapse is quite common, especially in older women. It is usually quite treatable, either with a pessary (a device that is inserted into the vagina to help maintain the uterus in place so that it doesn’t fall down) or with surgery. Most women who have a prolapsed uterus are aware of heaviness or discomfort in the area. Typically, if the prolapse is addressed, any associated urinary issues should resolve as well.

What can be tricky is if someone with PD sees a urologist for these issues and maybe they have a bit of an enlarged prostate or a bit of a prolapse, the urology team may assume the patient’s symptoms are solely due to this. In reality, their PD may be contributing, and the problem may be multifactorial.

Urodynamic testing can be very useful to tease out the actual problem. This test shows us the pressures and flow of the urine throughout the urinary system, and can indicate where the specific issues are.

Q: What are your thoughts on the drug Myrbetriq (mirabegron)?

A: Myrbetriq is an exciting newer drug for urinary urgency and frequency that works differently than the antimuscarinics mentioned previously, which can cause a lot of side effects such as constipation or dry mouth. Myrbetriq is usually better tolerated by those with neurologic disorders or cognitive impairment, though it is not officially approved specifically for these groups.

It can still cause side effects, however, such as heart palpitations or increased blood pressure. If your neurologist or urologist starts you on Myrbetriq, they should tell you to monitor your blood pressure periodically for this reason.

Q: I saw that “fizzy drinks” should be avoided for someone with urinary issues. What is it about fizzy drinks that causes problems? Is it the carbonation or the caffeine?

A: We don’t know for sure. The speaker suspects it may be the caffeine or aspartame that is often added, but even individuals who just have fizzy water on its own have observed that their OAB is worse. We know that caffeine acts as a diuretic, encouraging our body to produce more urine. Cutting it out may not cure your overactive bladder, but it may significantly help.

Q: What do you think about desmopressin nasal spray?

A: Desmopressin is actually a hormone that is produced by the body that promotes reabsorption of fluid from the kidneys. When your brain secretes desmopressin, your urine production decreases. It is also available in a synthetic version via a nasal spray or a pill absorbed under the tongue.

It is mainly useful for short-term bladder control over 4-6 hours, such as overnight to avoid nocturia. During that period of time, you produce less urine and the bladder doesn’t fill as much. But the fluid has to go somewhere, and so it reenters your circulatory system. For someone who already experiences swollen ankles, has kidney disease, or has any kind of congestive cardiac disease, this can be dangerous. So it’s important if you try this medication to have a conversation about the risks with the prescribing doctor and get your sodium levels checked.

Q: Why does the urge to void increase so quickly? As soon as I think of peeing, I have to go right away! Would biofeedback help?

A: As you go about your day, you are periodically receiving messages from your bladder. Normally we detect the sensations letting us know things are filling up, and head to the bathroom. What happens in PD is that there is an overactive bladder, but also, our perception of sensations in PD is often different. Our response to those sensations may be altered too.

Practicing mindfulness and biofeedback can go a long way to relaxing the bladder and helping you be more attuned to the body’s signals and learn to control your response to the sensations. Timed voiding – such as deciding to go every 2 hours and going to the bathroom at that time whether you feel the need – can also be helpful.

Q: Are there any supplements, such as Beta-Prostate, that you recommend for bladder issues or prevention of urinary tract infections?

A: Unfortunately, there are no supplements that have been shown to help bladder issues. For UTIs, cranberry tablets and D-Mannose may be mildly helpful for preventing the development of UTIs caused by E.coli, but they cannot treat an infection once it is present. Antibiotics would be necessary. Good hydration is important as well, to help flush out the system.

Q: Regarding percutaneous tibial nerve stimulation (PTNS), is that an option for someone with Deep Brain Stimulation (DBS) implanted?

A: As far as he knows, the main DBS manufacturers have all said that this is not a contraindication to undergoing PTNS. If you are concerned, it is best to double-check with the manufacturer of your DBS system, but the speaker believes they are all compatible.

Sleep and Parkinson’s – Webinar notes

In mid-May, the Davis Phinney Foundation (davisphinneyfoundation.org) offered a webinar on sleep and Parkinson’s disease (PD), featuring Dr. Ronald Postuma, a movement disorders specialist in Canada. He discussed the types of sleep issues commonly seen in PD and measures that can help to mitigate them.  These issues include insomnia (difficulty falling asleep or difficulty getting back to sleep), excessive daytime sleepiness, REM sleep behavior disorder (RBD), and restless leg syndrome.

Though the webinar focus was Parkinson’s Disease, all of the atypical parkinsonism disorders can include sleep issues as well.  And RBD is very common in Lewy body dementia and multiple system atrophy.  So we are sharing the webinar notes here.

The concept of “sleep hygiene” is mentioned in the presentation. The American Association for Healthy Sleep provides handy tips detailing healthy sleep habits.

This webinar was recorded and can be viewed here.

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


Sleep and Parkinson’s – Webinar notes
Presented by the Davis Phinney Foundation
May 13, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Dr. Ronald Postuma, described sleep as a crucial part of living with PD. It is a daily routine that helps our bodies rest and heal, and is essential for the healthy function of our brains. Yet sleep disorders are very common in PD. Almost 90% of those with PD will eventually develop sleep issues of some kind during the course of their illness. Dr. Postuma discussed the reasons for these issues,

Why is sleep so disrupted in PD?

There is a lot of overlap between the areas of the brain that are impacted by PD, and the areas that control sleep. Most – though not necessarily all – of the sleep problems experienced by someone with PD are probably directly related to PD. A general rule of thumb: did the sleep issues predate the PD diagnosis by many years? If so, they might be separate from the disease. For someone who already had diagnosed sleep apnea, or who had struggled with insomnia their whole adult life, these sleep difficulties may be exacerbated by PD, but are not necessarily caused by it. Either way, the important thing is to try to tease out what specific issues are impacting one’s sleep, and then decide how to intervene to try to address them.

From a motor standpoint, while sleeping, you basically don’t have PD.  Tremor stops, and rigidity melts away. The motor center in our brain unconsciously tells our body to move when we’re awake, but when we’re asleep, that center of the brain is inactive as well. The difficulty is that most of us wake up multiple times during the night. Even if you just woke up a little bit and would normally drift right back to sleep, once the tremor starts going, it can be challenging to get back to sleep. PD can cause increased urinary frequency, which may contribute to the need to get up during the night.

Dopaminergic medication such as levodopa (Sinemet) can cause sleeplessness, acting almost like a stimulant for some individuals if taken right before bedtime. For others, being “off” medication overnight can lead to discomfort, pain, and difficulty repositioning in bed.

What sleep disorders do we see in PD?

  1. Insomnia (difficulty falling asleep or difficulty getting back to sleep)
  2. Excessive daytime sleepiness
  3. REM sleep behavior disorder (RBD)
  4. Restless leg syndrome (RLS)

These sleep issues are discussed in more detail later in the summary.

A common pattern as people get age: falling asleep by 9 or 10pm, sleeping well for a few hours, then waking up in the early morning around 2-4am, unable to sleep again for an hour or two. Practicing good sleep hygiene will help to regulate the sleep-wake cycle; for instance, if you can’t sleep within a half hour or so, get up – don’t stay in bed! By lying in bed for hours, sleepless and frustrated, your brain will start to associate the bed with negative emotions, which can reinforce sleep problems. If it is safe given your mobility, get up and read a book or watch TV (but try to keep the screen dim, if possible) for an hour or two, then go back to sleep.

This pattern is not inherently harmful and can be fine for some people. In the morning, if you feel sufficiently rested even though you were up for an hour or two in the early morning, then that’s great. There is no need to add a prescription medication for sleep if this is your situation.

Other sleep hygiene tips:

  • Exercise (earlier in the day, not late in the evening or afternoon)
  • Light exposure during the day, especially if you have daytime sleepiness
  • Manage other comfort issues, such as temperature or noise

Question and Answer Session

Q: Is there something my neurologist can do to help, if sleep hygiene is being followed and sleep issues persist?

A: Check your dopamine therapy; they may need to add some close to bedtime if you are feeling under-medicated towards bedtime. Lots of the prescription sleep aids are designed to make you fall asleep at the beginning of the night, not to help you stay asleep throughout the night. Those that do cause you to sleep through the night typically make you sedated the next morning as well.

The speaker often uses doxepin and trazodone, older antidepressants that make people sleepy. They are not treating depression in his PD patients at all, but low doses of these medications are great for “sleep maintenance.” He uses benzodiazepines like clonazepam with caution due to the potential for dependence and sedation, though they can be useful for some patients.

Melatonin is available over-the-counter and is generally very benign. One would typically start with 3 mg or 5 mg; don’t go past 10 mg. Some people only need 0.5 mg or so, it is highly variable. The jury is out on whether it helps those with PD in general, but it can definitely help with REM behavior disorder (RBD), discussed more below.  For some individuals, melatonin works well; others need too high of a dose in order to be useful. The only real risk is that it might make you sleepy the next day if you use too much.

Q: How much sleep do I really need? What if I get less sleep than 8 hours on a regular basis, but I feel rested?

A: Go by how you feel, rather than by the total number of hours.  Anything more than 5 hours, if you feel good, don’t worry about it. Most people sleep less as they get older. Focus more on the quality of the sleep you are getting and how you feel in the morning – do you feel rested or tired? Naps can be helpful too, for those who regularly sleep less than 8 hours a night.

Q: What are “sleep attacks” and how common are they?

A: Sleep attacks are when someone falls asleep suddenly, almost immediately. This can happen when someone starts taking a sleep aid and their body isn’t used to it. It is also a known side effect of the dopamine agonist drug family, which includes some PD medications like pramipexole (Mirapex) and ropinirole (Requip). Most people do have some onset of sleepiness before they actually fall asleep; truly sudden “sleep attacks” are rare. But most people try to power through when they are feeling drowsy, and this can be quite dangerous.

If you are sleepy, you are driving, and you have PD, you have to stop immediately. Even pulling over on the side of the freeway, which is quite risky, is a safer option than trying to keep yourself awake if you are moving and can feel sleepiness coming on. Pull over, take a “cat nap” for a few minutes, or get out and move around, if it is safe to do so.

Q: How can I tell the difference between excessive daytime sleepiness and the regular fatigue that one gets with PD?

A: They can be mixed up with each other, and one can have both, but they really aren’t the same thing. An easy way to tell is: if you sit still in a chair, not doing anything, and you fall asleep right away, then you have somnolence or excessive sleepiness. If you sit in the chair and you feel mentally or physically fatigued, but you aren’t falling asleep, that’s likely PD-related fatigue.

Get outside into some sunshine, if you are able, as this should trigger your brain to wake up. If you don’t have ready access to the outdoors, or you live somewhere with gloomy weather, a lightbox lamp that simulates natural light can be helpful. Vigorous exercise improves the quality of one’s sleep and can actually give you more energy. The timing of your exercise matters, though. If you have trouble falling asleep in general, don’t exercise in the evening, as this can worsen your insomnia. Morning or daytime is better, in that case.

Q: How does caffeine play into all this?

A: Coffee (or other forms of caffeine can certainly help give you a boost if you are feeling tired during the day. But be aware that your body really gets habituated to caffeine levels pretty quickly. If you’re having a midday cup of coffee every day, it will start to lose effect. It’s better to use it just as needed, on occasion, so that your body will be more responsive to the caffeine.

Q: And what about your doctor – can she prescribe anything to help with daytime sleepiness?

A: There are a few medications, some of which are coming into clinical trials and are not available yet. Ritalin (methylphenidate) is a medication used for attention-deficit disorder in kids, and can sometimes be helpful for adults with daytime fatigue. Modafinil (Provigil) is a stimulant medication that is also helpful for some, though it can be very expensive and is not always covered by insurance.

There are some medications prescribed to really drive people to sleep deeply, with the aim of feeling more alert the next day. One of these is Xyrem (sodium oxybate), which is extremely expensive and difficult to use, in part due to its reputation as a “date rape” drug and is highly controlled for this reason. He has only prescribed this once in his career and doesn’t find it a good option for most.

In his experience, most effective is to schedule a nap or two throughout the day, as long as you are not having any trouble falling asleep at night. Short naps can be very beneficial.

Q: What is REM sleep behavior disorder (RBD)?

A: Rapid eye movement (REM) sleep is the part of our sleep cycle when our sleep is deepest, and our body is normally paralyzed. When we are dreaming in REM, it is almost like we are awake – our brain is having vivid, active dreams – but our body is kept paralyzed so we don’t move around and potentially injure ourselves buy acting out these dreams.

In those with PD and some other neurodegenerative disorders, the part of the brain that controls REM sleep is affected, and the body isn’t always paralyzed during REM. An individual doesn’t get up and walk, but often it might manifest as thrashing around, talking, singing a song, or smoking a cigarette. They are unaware this is happening, but a partner sharing the bed would definitely be disturbed by these movements and behaviors. In fact, sometimes movements such as thrashing or punching can strike the partner, leading to injuries. Safety, for the individual and their partner, is the only concern with REM behavior disorder (RBD).

Many people sleep apart. Keeping sharp objects or furniture away from the bed is a good idea. Having a mattress that is low to the floor is a good idea as well.

There are medications that can help. Melatonin can be tried over-the-counter and is helpful for many. Clonazepam can be very effective but has a high risk of sleepiness during the day; it can also increase the risk of falls due to grogginess. Antidepressant medications can actually be very helpful as well.

Q: Is it true that RBD can be a prodromal symptom of PD?  

A: Yes. We are learning that for many who develop PD, the nonmotor symptoms – sleep disturbances, mood changes, etc. – often predate the classic motor symptoms such as tremor.

Unfortunately, most people who experience RBD will go on to develop a neurodegenerative brain disorder, most often PD or a related disease called Lewy body dementia.

Q: What is restless legs syndrome (RLS)?

A: Restless legs syndrome (RLS) can occur in anyone, not just those with PD, but is also more common in those with later-stage PD and in people of European descent. It is usually described as a sense of pain or discomfort that is relieved when you move your legs. Once you lay still and try to fall asleep, the discomfort returns until you move your legs again. This can be quite bothersome and can lead to lack of sleep.

The medications used to treat RLS happen to be the same ones we use to treat PD. This can complicate matters, since we don’t want to make substantial changes to your PD therapy – which may already be optimized – to try to address the RLS. Additionally, RLS has the potential to paradoxically “augment” or worsen over time, the more dopaminergic medication is used to treat it. Unfortunately, it can be difficult to treat RLS; gabapentin is one option, but can cause sleepiness during the day. Sometimes physical measures such as going for a walk, massage, soaking the legs, or keeping the legs cool can be helpful.

Q: Are sleep studies useful?

A: If it isn’t clear what is going on with your sleep, a neurologist may order an overnight sleep study to further evaluate. Most of the time, a sleep study isn’t necessary to diagnose issues like RBD or RLS. If sleep apnea is suspected, the sleep study may be able to capture this issue so it can be treated.

Q: Do you recommend THC or CBD marijuana products to help with sleep issues?

A: THC can cause hallucinations and is generally not recommended for those with PD, but CBD seems to be helpful for some to reduce anxiety and improve sleep. We don’t really know yet because these substances haven’t been formally studied for use in those with PD.

Q: Do those with Duopa, the intestinal gel levodopa pump, tend to have sleep issues too?

A: The advantage of Duopa is a stable, consistent dosage of levodopa throughout the day. Most people turn off the pump overnight, but the complete lack of dopamine overnight can actually worsen sleep. So, for those patients, adding a little bit of oral Sinemet can be helpful.

Q: Does deep brain stimulation (DBS) affect sleep in those with PD?

A: For many, DBS does help sleep. It provides steady, ongoing therapy that isn’t subject to the wearing off or kicking in of oral medications – someone with DBS may still take levodopa orally as well, but overnight they will always have their DBS therapy ongoing even when the medications have worn off.

Q: If I only do one thing to help improve my sleep, what should it be?

A: Exercise! Wear yourself out, be active during the daytime. You should be tired from exercise, sweaty, out of breath at least once a day.