“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.

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:

www.youtube.com/watch?v=CEL8yEfMUSo

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

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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

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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.

“What a Pain! Understanding and treating pain in Parkinson’s” – Webinar notes

In early May, the American Parkinson Disease Association (APDA) Northwest Chapter offered a webinar on understanding and treating pain in Parkinson’s disease (PD), featuring Dr. Pravin Khemani, a movement disorders specialist. He discussed causes of pain in PD, treating pain by optimizing treatment of PD, and treatment strategies for pain in PD from other causes.

Though the webinar focus was Parkinson’s Disease, all of the atypical parkinsonism disorders can include symptoms of pain as well.  So we are sharing the webinar notes here.

One resource mentioned in the webinar is the PQRST pain assessment scale. You can download a PDF version of the scale here.

The webinar was recorded and can be viewed for free here.

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

 


What a Pain! Understanding and treating pain in PD – Webinar notes
Presented by the American Parkinson’s Disease Association, Northwest Chapter
May 8, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Dr. Pravin Khemani is a movement disorders specialist at Swedish Neuroscience Institute in Washington. His presentation covered causes of pain in PD, treating pain by optimizing treatment of PD, and treatment strategies for pain in PD from other causes.

What is pain?

“An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”

– International Association for the Study of Pain, 1979/2011

The experience of pain is contextual; the context for this presentation is PD, which is common but remains under-treated. Pain in those with PD is typically chronic (long-term), recurrent, and/or intermittent. Dr. Khemani’s presentation did not address acute or sudden pain, such as headache, chest pain, abdominal pain, eye pain, throat pain, etc. as these are not typical of PD and are common in the general population.

Most people are familiar with some of the non-motor symptoms associated with PD: sleep disorders, cognitive changes, mood disorders, and autonomic dysfunction are widely known. Pain should be included as another non-motor symptom of PD.

Why is pain so common in PD?

Chronic, recurrent pain is experienced by 60 to 70 percent of individuals with PD. Studies show that dysfunction in the dopamine circuits and pain pathways in the brain often degenerate in PD, leading to a higher incidence in PD. There is also a higher rate of musculoskeletal issues in PD that can also cause pain, which tend to be under-treated.

Pain seems to be felt differently in PD. There seems to be a lower threshold for feeling pain in those with PD, as well as altered pain sensation.

Dr. Khemani classified pain in PD into two categories, which will be discussed further:

  1. Pain from PD and its treatment
  2. Pain from other causes

There are many different techniques for classifying or attempting to quantify pain, but it is an inherently subjective experience and there is no way to objectively “measure” someone’s pain. The speaker finds it helpful to use the “PQRST” assessment:

  • Precipitating (and relieving) factors:  What makes the pain worse? What makes it better?
  • Quality:  How would you describe the pain? What does it feel like? [Examples: dull, achy, throbbing, sharp, electric shock-like, burning, tingling, icy]
  • Radiation:  Is the pain in one place or does it move around the body?
  • Site & severity:  Where is the pain? On a scale of 0-10, how do you rate the pain?
  • Timing & treatment:  When did the pain start? How often does it occur – constant or intermittent? Any relation to timing of PD medications, such as during “on” or “off” states? Are you getting treated for the pain?

The type of pain can help a healthcare provider help to differentiate possible causes and treatments. For instance, nerve pain often feels like sharp, shooting, or tingly pain, whereas muscle pain tends to be a dull, deep ache. These pain types may require different modes of management.

For those with PD, it is essential to determine if there is any relationship between the timing of the pain and the PD medications.

Pain from PD and its treatment

Pain may be due to under-treatment of PD symptoms, or from motor fluctuations. A low-dopamine state can cause substantial discomfort. Pain can sometimes be the first sign of PD, even before motor symptoms appear, but is often unrecognized because it is so common from other causes as well.

In studies, individuals with PD have described their pain as “electrical discharge,” “throbbing,” “hot and cold,” and “generalized” body pain. The pain is highly variable in perception and location, though it is usually worse on the side of the body that is more affected by motor symptoms.

How to correct pain from under-treatment? Simple: optimize dopamine treatment to improve the motor symptoms! This improves pain in about 48 percent of cases. If pain persists despite an increase in dopamine, then standard pain medications (analgesics) like ibuprofen or Tylenol are effective in 78 percent of cases.

Dystonia is abnormal, sometimes painful, muscular contraction. Those with PD sometimes experience dystonia in the hands or feet, either in the on-state or off-state. Dystonia in the feet can cause the foot to rotate, or the toes may curl; this is often painful and may make it difficult to walk safely. Hand dystonia can cause hands to curl or rotate as well.

Dyskinesias are abnormal movements that tend to be mobile, dynamic, and typically triggered by dopaminergic medication. They are not typically painful and may not even be bothersome, though in cases of severe neck or head dyskinesias, pain may occur. Dyskinesias may happen when medication is kicking in, wearing off, or reaching its peak.

The concept of a therapeutic window refers to the range of medication dosage in which a person with PD gets enough medication to feel “on,” but not so much medication that they are over-medicated and experience dyskinesias or other unpleasant side effects.

As PD progresses, the therapeutic window gets narrower: it is harder to get the balance of medication just right. Medication may wear off earlier, necessitating more frequent dosing, and may take longer to kick in. Dyskinesias may become more common. The period of getting a good “on” state shrinks, and the individual experiences longer “off” times when medication is kicking in. For those who have “off” dystonia, the periods of uncomfortable dystonia lengthen.

Treatment of motor and pain fluctuations

The first step is optimization of PD treatments: the goal is to spend more time in the “on” state without dyskinesias and less time in the “off” state.

  1. Multimedication treatment: Adding other medications rather than solely increasing the dose of levodopa is the most effective approach.
  2. Surgical treatment: Options such as Deep Brain Stimulation (DBS) or a levodopa intestinal pump may work well for some patients to reduce fluctuations.
  3. Customize for each person: Everyone is different; needs and symptoms also change over time as the disease progresses.

One technique for optimizing PD medications is fractionation: taking smaller doses more frequently. However, this significantly increases “pill burden” – the number of pills an individual has to keep track of each day – and the likelihood of mistakes or missed doses.

There are some medications that provide longer “on” time with reduced likelihood of dyskinesias.

Rytary is a newer formulation of carbidopa-levodopa that combines short-acting and long-acting levodopa into one pill. For some patients, it can replace short-acting carbidopa-levodopa (Sinemet) with fewer doses and pills per day.

Another recent option is the Inbrija inhaler, which is a version of levodopa that can be inhaled. It is intended for people with occasional wearing off and usually kicks in within 10 to 30 minutes. One advantage for those with chronic constipation or other gastrointestinal issues is that Inbrija bypasses the gut.

Other medications are frequently used in combination together. By taking smaller doses of each drug, individuals can often avoid the side effects associated with a larger dose of one. Common medication combinations include:

  • Carbidopa-levodopa, such as Sinemet or Rytary
  • Dopamine agonists (in those under the age of 60, due to risk of side effects), such as pramipexole (Mirapex)
  • COMT inhibitors, such as entacapone (Comtan)
  • Monoamine oxidase inhibitors (MAOIs), such as rasagiline (Azilect)
  • Amantadine

Dystonia does not always respond to dopaminergic medications; those with painful muscular contractions may not experience relief even when their PD medications are optimized. In those cases, injected botulinum toxin (Botox) can provide substantial relief by paralyzing or weakening the dystonic muscles with small injections that are repeated every three months.

Alternatively, other oral medications such as clonazepam or trihexyphenidyl may be useful for “refractory” dystonia that does not respond to PD medications; these drugs carry risks of side effects and are not recommended for everybody.

Deep Brain Stimulation (DBS) has been a treatment for the motor symptoms of PD for twenty years, but is increasingly being explored for other diagnoses, including pain and depression. By implanting the stimulators in different areas or “targets” within the brain, the stimulation may provide therapy for these other disorders.

Over time, pain from PD will change and evolve, so DBS would likely have to be used in conjunction with other pain management modalities, not by itself indefinitely. Currently, DBS is not recommended solely for the treatment of pain that is associated with PD.

Other types of pain associated with PD

Central pain:

  • Variable description, often electric, achy, generalized body discomfort
  • Often treated with analgesics like Tylenol, muscle relaxants, gabapentin, tricyclic antidepressants, duloxetine, or pregabalin

Akathisia:

  • A state of inner restlessness that makes it impossible to sit still
  • Treated by optimizing PD medications

Restless leg syndrome (RLS):

  • “Creepy-crawly,” “tingly,” burning, aching, or throbbing in the legs that occurs with rest and is relieved by moving the legs
  • Can cause severe sleep disturbance
  • Treated with pregabalin, gabapentin, pramipexole, rotigotine, ropinirole, opiates, and other medications

Pain and discomfort from other causes

It can be quite challenging to tease apart the true causes of pain, and determine whether they are directly related to PD or due to some other cause. A team approach is often necessary, and may include:

  • General practitioner
  • Rehabilitation specialist
  • Rheumatologist
  • Pain specialist
  • Orthopedist
  • Neurosurgeon

Musculoskeletal(MSK) disorders are very common in PD, often affecting the neck, low back, joints, and limbs. This type of pain is often described as dull, deep ache, sharp pain with movement, cramping, throbbing, or “Charlie horses.” Causes of MSK pain include past injury; wear-and-tear; inflammation of the muscles, ligaments, and connective tissues; and osteoporosis that can lead to fractures. Frozen shoulder, arthritis, scoliosis, joint and spine deformities, stooped neck, and foot problems are all common MSK disorders. Neurologists typically do not treat these kinds of pain, hence the need for a team approach. Imaging with x-rays or MRI may be helpful for diagnosis.

Regular stretching is essential for all individuals, particularly in those with PD. Medications such as analgesics, steroids, and anti-inflammatories may be used; in some cases, surgery may be necessary. Rehabilitation in the form of physical or occupational therapy can be highly beneficial.

Neuropathic pain is caused by damage to the nerves, and is usually described differently than MSK pain: tingling, numbness, burning, “pins and needles,” and “shock-like” are all common descriptors for neuropathic pain.

When nerve pain occurs in the hands and feet, typical causes are neuropathy, diabetes, or deficiencies of vitamin B-12 or folate. Radiating, often asymmetric pain may occur in the shoulder, arm, back, or legs. Nerve pain may be due to radiculopathy (“pinched nerves” at the root of the nerve) or neuropathy (damage to the nerve in the periphery, far from the root).

A neurologist or a general practitioner can treat neuropathic pain. Depending on the location of the pain, an MRI of the back or neck may rule out other potential issues. Blood tests will determine if any vitamin deficiency is present; blood sugar control is also important, if diabetes is present. Rehabilitation therapy such as physical therapy is often recommended. Oral or topical medications are often helpful, and surgery may be necessary in some cases, depending on the cause of the neuropathic pain.

Some conditions can actually accentuate pain if they are present at the same time, so it is important to recognize and try to address these conditions if they exist. Depression, stress, and anxiety go hand in hand with pain, so it is essential to ask about mood when evaluating pain. Treating the pain without treating the concurrent mood disorder will not be effective. Lack of exercise and stretching is another major contributor to pain that can be addressed. Poor quality sleep, constipation, and low blood pressure (BP) are all issues that worsen the experience of pain significantly as well. Low BP results in decreased blood perfusion to muscles and nerves, which can worsen pain.

Marijuana for pain in PD?

We do not know the effects of the chemical components of marijuana – THC and CBD – in the brains of those with PD. Because of the lack of research in this area, Dr. Khemani does not prescribe marijuana to his patients, even though it is legal in the state where he practices.

If someone has severe pain from another cause, such as cancer, then a referral to a pain physician is appropriate and may sometimes result in recommendation for a trial of marijuana.

Main takeaways:

  • There are myriad causes of pain in PD.
  • The pain evaluation questions “PQRST” can help to identify the cause of the pain.
  • Optimization of PD treatment for both motor and non-motor symptoms is essential.
  • Multidisciplinary treatment for non-PD causes of pain is necessary too.

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

Question & Answer Session

Q: Regarding DBS, is there an upper age limit?

A: No, there isn’t; what matters is your “physiological” age rather than chronological age: how healthy you are in general.

Q: Regarding Pisa syndrome and “Charlie Chaplin” gait – why does PD cause these?

A: There are two main postural changes that can occur in PD:

  1. Mechanical bend in the spine, similar to scoliosis; this is not only specific to PD and cannot be fixed, except with surgery
  2. Camptocormia, also called Pisa syndrome, in which there is a significant forward or sideward bend in the spine due to contractions of muscles

Camptocormia falls under the category of dystonia. It can occur gradually over time and can be quite problematic for some people. Sometimes it can improve with sufficient PD treatment. Other times, it can present as a dyskinetic dystonia due to over-treatment with dopamine. One way to differentiate camptocormia from scoliosis is the ability to lay flat on the bed, which isn’t possible in mechanical issues like scoliosis but is usually possible with camptocormia

Botox isn’t very effective but is sometimes used; the muscles are too deep to be very accurate with the injections. DBS may be helpful in some cases.

Q: Regarding non-traditional, non-pharmacological approaches to pain, do you think these are helpful? (i.e. acupuncture or yoga)

A: It entirely depends on the patient; everyone is wired differently. He recommends seeing a physical or occupational therapist to evaluate the patient to figure out where the deformity or issue is coming from. Once you have done this, and are cleared, then you could consider exercises such as yoga. It is ideally best to work with someone who knows that you have PD and has some understanding of the disease. Acupuncture suggests some benefit for those with PD, though very small sample sizes in these studies. The placebo effect is very real so it can be hard to draw any clear conclusions from many of the studies looking at integrative or complementary medicine.

As long as there is no interaction with the existing PD meds or exacerbation of the existing problem, Dr. Khemani is all for trying complementary medical approaches.

Q: Are there any vitamins or nutritional supplements that can be helpful for pain?

A: Great question! We talked about osteoporosis, which is serious bone loss that can lead to fractures; osteopenia is lower bone density that can eventually become osteoporosis. People with PD are at higher risk of developing both, and are often deficient in vitamin D and calcium, important elements in bone health. Falling and stumbling – experienced by many with PD – can lead to broken bones in someone with osteopenia or osteoporosis, rather than just a minor bruise.

However, be cautious not to take excessive amounts of vitamin D, as it is fat-soluble and can build up to unhealthy levels in the body if taken in excess. Calcium can cause constipation if over-dosed as well. So, if you supplement either calcium or vitamin D, make sure you don’t exceed the recommended daily dose on the bottle.

Vitamin B-12 and folate, as mentioned before, are important for treating neuropathic pain that is related to vitamin B-12 deficiency.

People sometimes use magnesium supplements to mitigate pain. It is also used to alleviate constipation, which is one of the most-neglected health issues in those with PD: going several days without a bowel movement. For someone with back pain, constipation can significantly exacerbate the pain, partly due to internal pressure, and partly from straining to have a bowel movement. Straining can even cause a slipped disc. Everyone should be taking measures to encourage a daily bowel movement; talk to your primary care doctor if you aren’t sure where to start.

Q: Are people with PD more prone to back pain than the general populace?

A: A variety of things can cause back pain. The most common cause in the general population is simply aging and degeneration. In PD, back pain is especially concerning because staying active and moving around is so important in this disease. We don’t want Dr. Khemani often refers his patients to the Spine Clinic at his medical center to see if rehab or other therapies may be useful, or in some cases, if surgery is warranted.

Q: Are people with PD more prone to headaches? Is it related to PD?

A: People in general are prone to headaches; we don’t have any reason currently to think they are more common in PD. The treatment would depend on what kind of headaches you are having. Fellowships to become a headache specialist are usually two years long, so there is a lot to learn about the management of headaches and it is a complex field.

There is no such thing as a PD headache, per se; if you are bothered by headaches, start with your primary care doctor. For those who experience more serious headaches such as migraines or cluster headaches, then seeing a headache specialist is likely in order.

Q: What is the best way for me, as a patient, to track my pain symptoms and provide useful information to my movement disorders specialist?

A: The “PQRST” mentioned above is absolutely key: this is what providers want to know about your pain. This tool will help you to express what you are experiencing to your provider. There are also pain tracker apps available.

A downloadable PDF mentioned at the beginning of this summary is also available here.

Being an advocate for your loved one with LBD and other disorders – UCSF webinar

Editor’s Note: Although the focus of this webinar was advocacy for those with Lewy body dementia, this webinar applies to those who have loved ones with any neurological disorder (not just LBD and not just dementias). This is one of the most comprehensive webinars I’ve ever heard. This should be required reading for every caregiver!

In April 2020, the UCSF Memory and Aging Center (MAC) hosted a webinar on advocacy in healthcare and community settings — the fourth in its ongoing series on Lewy body dementia (LBD).  The two wonderful speakers were Sarah Dulaney, RN, clinical nurse specialist with UCSF, and Helen Medsger, long-time Brain Support Network LBD support group member.  Helen cared for her sister with LBD.  They discussed the importance of establishing a daily routine and preventing falls, plus provided activity suggestions and tips for communication.

Thanks to Helen Medsger for alerting us to the MAC’s LBD webinar series.  You can find the list of the full series here:

UCSF Lewy Body Dementia Caregiver Webinar Series

The April 28th webinar featuring Sarah Dulaney and Helen Medsger was recorded and is available on YouTube:

www.youtube.com/watch?v=BsKMUCcfehk

The MAC is asking that everyone who views the recorded webinar provide feedback through a brief survey here:

https://ucsf.co1.qualtrics.com/jfe/form/SV_3gCsLd4Ed4CRaOF

This webinar is worth listening to and/or reading the notes (see below)!

If you missed the first three webinars in this series, check out some notes here:

What is Lewy body dementia?
www.brainsupportnetwork.org/what-is-lewy-body-dementia-and-how-is-it-treated-ucsf-webinar-notes/

Behavior and mood symptoms in Lewy body dementia
www.brainsupportnetwork.org/behavior-and-mood-symptoms-in-lewy-body-dementia-ucsf-webinar-notes/

Managing daily activities and fall prevention
www.brainsupportnetwork.org/managing-daily-activities-and-fall-prevention-in-lewy-body-dementia-ucsf-webinar-notes/

For further information on Lewy body dementia, look through Brain Support Network’s list of resources:

Brain Support Network’s Top Resources on LBD

Lauren Stroshane, with Stanford Parkinson’s Community Outreach, listened to the webinar and shared her notes.  See below.

Robin

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Advocacy in healthcare and community settings – Webinar notes
Presented by the UCSF Memory and Aging Center
April 28, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

“As family caregivers, we often play many roles, including scheduler, financial manager, housecleaner, encourager, nurse, navigator, nurturer, and more. Perhaps the most important role, though, is advocate, as we ensure the best life possible for our family and friends when they are vulnerable.”

– Amy Goyer, AARP’s Family and Caregiving Expert, 2016

Whether you know it or not, you are already a healthcare advocate in many ways. Lewy body dementia (LBD) is a progressive neuro-degenerative illness that will require a high level of care over time.

A sample dementia caregiving trajectory, from the National Academy of Sciences (2016):

  1. Awareness – Checking in and monitoring. Light errands. Communication with medical providers. Advance care planning (medical & legal).
  2. Unfolding responsibility – Monitoring symptoms and medications. Managing finances and household tasks. Hiring, training, and managing caregivers. Coordinating medical care. Providing emotional support.
  3. Increasing care demands – Monitoring safety risks and behavior. Symptom monitoring and management. Personal care. Acute care transitions. Insurance and public benefits.
  4. End of life care – Communication of the person’s values and preferences. Advocacy and surrogate decision making. Comfort and sensory stimulation. Personal care.

What are some tasks/responsibilities of LBD caregivers?

  •     Medications, appointments, diet, and lifestyle
  •     Monitoring, responding, and alerting
  •     Learning & sharing information
  •     Communication & documentation
  •     Record keeping, insurance, finances, & public benefits
  •     Negotiation, advocacy, & surrogate decision-making

The volume of responsibilities can be overwhelming, but you don’t have to go it alone. Sit down and talk with loved ones to see what responsibilities can be shared or delegated.

Carrying the burden of caregiving alone can be dangerous for your health, with up to a 63% higher mortality rate.  Respite care, such as home care, a day program, housekeeping, or meal delivery can be very beneficial, both for you and for the person with LBD.

Other sources of help might be family, friends, or a neighbor; a private care manager or fiduciary; a publicly appointed conservator or guardian; or a county case manager if the individual is low-income. When looking to hire a professional, seek recommendations from a trusted source, such as the local chapter of an advocacy group such as the Alzheimer’s Association, members of a support group, a senior program, or your attorney.

When is a publicly-appointed conservator required? When the individual can no longer take care of themselves and does not have a family member or close friend to act on their behalf.

Tips & strategies for healthcare advocacy

Each of these are explored in depth throughout the rest of the summary:

  1. Compile & organize critical documents and information. 
  2. Educate yourself about LBD.
  3. Understand the person’s needs, preferences, goals, and values to understand what is important to them.
  4. Build a “village of care” team.

Compile & organize critical documents and information

A three-ring binder can be portable and easy to update, or virtual options as preferred. Provide copies for others who serve a primary caregiver role for the individual.

  • Medical information for the patient
    • Medical history, current diagnoses
    • Current list of medications (name, reason, dose, route, schedule)
    • List of allergies or contraindicated medications
  • Emergency contacts (name, email, phone #)
  • Patient’s ID, insurance card, and medical record #
  • Names and contact information for the patient’s medical providers
  • Legal documents
  • HIPAA Release of Information form (one for each health setting)
    • Every health delivery system will have their own form and requires it to be signed by the individual, if they are able, before they will release health information to you.
  • Advance Healthcare Directive or Durable Power of Attorney for Healthcare: a legal document that allows an individual to spell out their preferences for life-saving medical interventions and end of life care, ahead of time, and designates an individual who is empowered to make healthcare decisions on their behalf, if necessary.
    • Prepare for Your Care
    • This requires that you speak with the loved one about their wishes while they are still able to consider such decisions.
  • POLST (Physician’s Order for Life Sustaining Treatment) tells emergency professionals what to do in a crisis when the patient cannot speak for themselves.
  • Durable Power of Attorney for Finances: a legal document that establishes who is permitted to make financial decisions on behalf of the individual.
    • It is important to consult with an attorney while the individual still has mental capacity, to ensure this is set up correctly and that there is no concern about fraud or financial abuse.
    • The Consumer Financial Protection Bureau offers a helpful guide on managing someone else’s money.
  • Representative Payee (Social Security): if your loved one is eligible for Social Security, visit the Social Security Administration website to learn about how you can manage these benefits on behalf of your loved one.
  • VA Fiduciary (Veteran’s benefits): if your loved one is eligible for Veteran’s benefits, read this handout from the Veterans Affairs website to learn about how you can manage these benefits on behalf of your loved one.

Educate yourself about Lewy body dementia

It’s important to understand the common symptoms and risks associated with LBD, to prepare yourself to be an effective and empathetic caregiver.

Those with LBD commonly experience:

  • Cognitive and functional decline
  • Lack of safety awareness
  • Mobility problems and fall risks
  • Swallowing problems and weight loss
  • Mood and behavioral symptoms
  • Sleep disruption
  • Dysfunction of the autonomic systems in the body, affecting urination, digestion, and blood pressure regulation.

How to accomplish all of this?

Amassing all of this documentation and knowledge can feel like an insurmountable task at first! Prioritize needs and goals to help yourself determine what to tackle first:

  • Physical/medical
  • Emotional/psychological
  • Social/familial
  • Legal/financial

Most importantly, learn to ask for (and accept) help from others! Whether family, friends, or professionals, reach out to others and try to build a “village of care” team to help support you and your loved one.

Members of a village of care team may include:

  •     Primary care provider
  •     Specialist provider, such as a movement disorders specialist
  •     Friends, family, neighbors
  •     Therapist, support group
  •     Respite care providers
  •     Elder law attorney, financial planner, or case manager

What to expect in different medical settings?

Let’s say you have all your documents organized and your “village of care” team in place. Next it’s helpful to know what to expect at different levels of medical care for your loved one. The second half of the webinar focused on common care settings and what to expect at each one, in terms of the team you will be communicating with, the types of help available, and the best ways to advocate for your loved one.

Care in ambulatory clinics

Ambulatory clinics include doctors’ offices, urgent care clinics, outpatient surgery settings, dialysis units, and many others. The team will likely include a clinic coordinator or medical assistant, a social worker, triage nurse, and provider (physician, advanced practice nurse, or physician assistant).

Types of help that are available in a clinic setting typically include:

  • Triage urgent care needs
  •  Diagnostic and routine follow-up appointments
  •  Medication refills and prior authorization
  •  Help with forms
  •  Referrals for specialty care, home health, outpatient rehab, and durable medical equipment such as a walker or wheelchair
  •  Information and resources

Consider the best way to communicate

Who should you be communicating with when a need arises? In many clinics, a care coordinator or nurse will confer with you first, to determine if input from the doctor is needed. Find out how the communication workflow operates in this clinic – how do they prefer that you contact the office? Does the doctor or medical group have a phone app or online messaging? An online portal or secure email? Or are they “old school” and prefer phone or fax?

  •  Electronic medical record messaging
  •  Secure email
  •  Phone
  •  Fax
  •  Scheduled phone or video visit
  •  Routine or urgent in-person visit
  •  Quarterly care planning meetings (at long-term care facilities)

How to get the most out of visits with providers

  1. Prepare and prioritize 3-4 concerns to bring up during the visit. More may not be practical to address in one appointment. What is most important? If you have kept notes since the last visit about how your loved one is doing, that’s great! If not, sit down a day or two before the appointment and write down some bullet points about how they’ve been, any changes and concerns.
  2.  Stay focused – describe symptoms or changes briefly, including the most important information such as when it started, how often and when it occurs, and if it is improving or worsening.
  3. Be honest with the care provider, even if it is uncomfortable. If you are truly unable to speak openly in front of your loved one, send a message ahead of time to the provider so they can bring it up in person, if appropriate.
  4. Advocate if you feel your concerns are not being addressed.
  5. Accept that sometimes providers are not able to provide the answers you seek. If you feel your concerns are being ignored, it may be appropriate to seek a second opinion.

Learn what is covered by your insurance

To help avoid surprising or potentially devastating medical bills, it’s a good idea to know what your insurance covers as far as appointments, procedures, and medications. Contact your insurance company to review your coverage, or check what benefits you are eligible for on government and insurance websites:

If you don’t have comprehensive drug coverage, the website www.GoodRx.com is a helpful resource to compare out-of-pocket drug prices among different pharmacies, and often provides coupons as well. 

Emergency room visits and hospitalizations

One of the largest challenges in caring for someone with LBD is when they require treatment in a hospital or emergency department. Providers you may interact with include:

  • Patient care assistant or nursing assistant
  • Shift nurse
  • Charge nurse
  • Rehabilitation therapist (speech, physical, or occupational therapy)
  • Discharge planner (typically a nurse case manager or social worker)
  • Attending physician

Since your loved one is likely injured or ill, if you are in a hospital setting, do your best to be prepared: have all your emergency information with you, have a list of their current medications with you, introduce yourself to the team, and do not be afraid to ask questions if you need clarification.

Types of care that are available:

  • Evaluation and treatment of severe symptoms, acute conditions, and serious injuries
  • Scheduled operations and procedures
  • Discharge plan
    • Follow-up care instructions
    • Follow-up care appointment
    • Medications and referrals
    • Home health
    • Skilled nursing facility

How does Medicare handle payment for a hospital admission?

Let’s say you came through the emergency room and your loved one was admitted to the hospital. Is Medicare going to reimburse the cost?

“Observation status” or “social admission” means Medicare will not cover a post-hospitalization stay in a skilled nursing facility.

To be eligible for skilled nursing coverage under Medicare, typically a 3-day hospitalization with an “admitting diagnosis” is required.

In a hypothetical scenario, your loved one with LBD has become really lethargic suddenly. They aren’t eating or taking their medications, and their regular doctor advises that you take them to the emergency department (ED). After you arrive in the ED, the doctor there orders testing to see if there is an underlying infection, such as a urinary tract infection (UTI), that would need treatment.

What’s tricky with LBD is that symptom fluctuation is a core feature of the disease. This could be an instance of that. In our hypothetical scenario, the test results in the hospital don’t indicate any infection, and an LBD fluctuation seems most likely.

As the day goes on, your loved one does not improve, however, and they are admitted to the hospital for further monitoring. The attending physician feels that they might benefit from staying in a skilled nursing facility (SNF) for a period of time to help bring them back to their previous baseline.

At this point, it is very important to know their original hospital admission status. Were they there under observation, or social admission status? If so, Medicare will NOT cover the skilled nursing stay afterward. If they had an admitting diagnosis, such as a UTI or sepsis, and required 3 days of hospitalization or more, then typically Medicare will cover it.

It’s essential that you speak with the assigned discharge planner – who may be a case manager or social worker – and review the options before your loved one is discharged from the hospital.

As you get closer to discharge, if you feel like their condition has not improved and warrants more care than you or the rest of the existing care team can provide, then you may have the right to challenge the discharge as unsafe. Before taking this step, however, it’s important to know your rights, and carefully consider whether this is truly warranted.

The California Advocates for Nursing Home Reform provides a factsheet with useful information about this process.

Long-term care settings

Heading into this care setting, it’s important to know whether you expect this to be a short-term rehab stay for or a long-term “custodial” stay. This will determine if the stay is covered under Medicare or Medicaid, or if you will be responsible for payment. To avoid surprises, make sure to discuss all these options carefully with the facility’s billing office, at the beginning of placement.

Short-term rehab stay:
– Full coverage for up to 20 days, then partial coverage by Medicare for 80 more days
– Requires the ability to make progress towards rehab goals

“Custodial” long-term care:
– Private pay
– Medicaid, if eligible

Team members that you may interact with include:

  • Nursing assistant
  • Shift nurse
  • Activities coordinator
  • Rehabilitation therapist (PT, OT, ST)
  • Social worker
  • Director of nursing
  • Provider (physician, advanced practice nurse, or physician assistant)
  • Administrator

How to advocate in long-term care settings?

If your loved one is placed in a facility – whether for a short-term rehab stay or for long-term care – and you need to advocate for their safety and well-being, it’s important to familiarize yourself with residents’ rights (sometimes called patients’ rights). By law, facilities must post these rights on the wall in a visible place; it’s a good idea to locate and read these documents. You can take a photo to read in more detail later, if need be.

Recognize workforce challenges the facility staff are facing. What is the staff-to-patient ratio? Do they meet or exceed state regulations? Maybe the staff were unable to meet your loved one’s needs because they were busy taking care of many residents. Sometimes it is necessary to let a few things go or lower some expectations, but never at the risk of your loved one’s safety.

Prioritize needs and communicate your concerns concisely to the staff. Open the lines of communication and offer to work with staff to address any issues. Participate in quarterly care planning meetings to touch base with the care team. If necessary, you may need to escalate concerns that are related to safety and well-being, if they are not being addressed.

Contact the local Long Term Care Ombudsmen, a trained patients’ rights advocate. Their phone number is also required to be posted visibly in the facility.

Home health care

If the person you are caring for is able to stay at home, but needs additional medical care in that setting, this is called home health care. Examples of this type of care include:

  • Skilled nursing (wound care, infusions, medication management, teaching)
  • Rehabilitation (PT, OT, ST)
  • Medical social services
  • Durable medical equipment (DME), such as a walker, wheelchair, or brace
  • Limited home care assistance (such as toileting or bathing)

Medicare coverage typically requires a referral from a provider and ongoing oversight. The individual must also be homebound. Coverage is typically intermittent, such as fewer than 7 days a week and less than 8 hours a day, over a period of 21 days. There is sometimes a 20% copay.

Palliative or Hospice care

While palliative care has historically been associated with the end stages of life, it can actually provide assistance at almost any stage of illness. The goal of palliative care is to reduce suffering and improve quality of life. Hospice care is appropriate for advanced or terminal illness, when the person likely has less than six months to live. In some cases, patients go on hospice and survive longer than anticipated; they then “retire” from hospice but can go back on it if their condition worsens again. The fluctuations experienced by dementia patients means this is common in those with LBD.

Hospice services are covered by Medicare; palliative care typically is not. Availability of palliative care varies greatly by location and health plan coverage. The support services for patients and caregivers can be greatly beneficial. Check with the primary care provider for more guidance.

A palliative care or hospice team typically includes:

  • Home health aide
  • Social worker
  • Nurse
  • Chaplain
  • Attending provider (may be a primary care doctor or a hospice/palliative care doctor)

Types of care provided:

  • Various palliative care programs
  • Medications
  • DME such as a hospital bed
  • Help with bathing
  • Incontinence supplies
  • 24/7 on-call triage nurse
  • Weekly in-home nurse visits
  • Ancillary services
  • Limited respite (varies)

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Advocacy in community care settings

In the United States, medical care and social care are considered quite separate, more so than in some other countries. Legal and financial assistance was mentioned earlier in the presentation, but falls under this category as well, and is essential to consider, particularly as the disease progresses and the costs of care may or may not be covered entirely. An attorney with expertise in elder law can be very helpful for this process.

The Community Resource Finder, funded by the Alzheimer’s Association and AARP, can be helpful for finding local options.

Psychosocial caregiving is a bigger responsibility than we often give it credit for. It often arises early in the disease and is an important role that the caregiver plays, in helping the individual but also the family and broader community to understand their changing needs and abilities.

  •     Balancing activity and rest
  •     Maintaining connections and managing conflict
  •     Informing and preparing
  •     Planning and scheduling social events
  •     Adapting communication
  •     Simplifying social engagements

Care management services

If you are feeling (understandably) overwhelmed by all these responsibilities, there is often help available in the form of care needs assessments and recommendation, coordination of care and services, and assistance with home care arrangements and placement.

There are private pay options, for those who can afford it. Fortunately, California also has subsidized programs:

The Family Caregiver Alliance, which is part of the National Center on Caregiving, provides many resources such as a list of nonprofit Caregiver Resource Centers in California.

Medicaid waiver county-based case management programs.

Program for All-inclusive Care for the Elderly (PACE).

Other community support services

  • Housekeeping
  • Meal or grocery delivery
  • Transportation – Paratransit, ride-sharing apps, specialized ride-share services such as Go Go Grandparent
  • Money management
  • Home modification programs – these are sometimes available through your local county

Congregate respite programs

The speakers encourage caregivers to consider these types of programs for their loved one with LBD earlier in the illness, not later.

  • Senior centers
    • Free or low cost
    • Meals and activities
    • May not be appropriate for those with cognitive impairment
  • Social day programs
    • Private pay
    • Typically includes transportation, meals, and activities
    • Medication administration
  • Adult day health centers
    • Private pay and Medicaid
    • Typically includes transportation, meals, and activities
    • Medication administration
    • Rehabilitation services (PT, OT, ST)
    • Nursing and social work services

To find these kinds of resources in your own community, you can search the following websites to see what is located near you:

In-home care

Not to be confused with home health care, in-home care refers to general assistance in the home and is not covered by Medicare. This includes help such as companion care, light housekeeping, supervision, and personal care such as toileting, bathing, and dressing.

The Family Caregiver Alliance has a useful article on hiring in-home help.

Those who can afford to do so often use a home care agency, which handles background checks, liability insurance, staff training, and scheduling.

A private caregiver is typically cheaper, but carries potentially higher risk (such as taxes, liability, and labor laws).

A live-in caregiver typically provides services in exchange for reduced rent; this type of arrangement can sometimes be subject to liability and labor laws.

Medicaid community-based in-home care waiver programs vary by state:

CA Department of Social Services In-Home Supportive Services Program.

Care in an assisted living facility

These types of facilities are for individuals who require less medical intervention than in skilled nursing or a nursing home. Instead, they provide the types of assistance that in-home care might help with: meals, help with medications, personal care, activities, and sometimes dementia care.

  • Board and care home – typically 6-8 residents, often lower-cost options
  • Assisted living facility – can have hundreds of residents, varying levels of assistance
  • Memory care facility

Some retirement communities might provide all levels of care, from assisted living to skilled nursing. The cost of these facilities varies greatly. The Family Caregiver Alliance has a helpful web page with tip sheets comparing the different residential care options.

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Other ways to advocate

Participation in research can be deeply rewarding for those with LBD. You can learn more about what clinical trials are currently recruiting at the national database of clinical trials.

There are many different beliefs around organ and brain donation. For some, brain donation can be a rewarding way to feel they are leaving a legacy and helping to further our understanding of neurodegenerative illness. Brain Support Network is a nonprofit organization that facilitates brain donations, educates families, and organizes caregiver support groups.

Consider volunteering with an advocacy organization such as the Lewy Body Dementia Association.

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Question & Answer Session

Q: In this time of Covid-19, how can we advocate for loved ones’ needs even if we may not be allowed to visit them in the hospital or facility? How can we make sure their needs are advocated for remotely?

A: The possibilities will be largely dependent on the facility and staff. It’s generally a matter of calling the facility and hopefully finding a staff member who is willing and able to facilitate contact (via phone or a video call) with the resident. This might be a social worker, an activities coordinator, or the director of nursing. They have heard of some families purchasing an Amazon Echo Show device for their loved one with LBD, which allows the family to make video calls easily. Scheduling a time each day or week with facility staff to check in with the individual and/or the staff can be very helpful, both for the staff to make time regularly and for the family to get regular updates. Sometimes calling at mealtimes may be beneficial.

Others have organized “window visits” to arrange for a staff member to help the resident to a designated window while the family waves to them from outside. Finding ways to support the staff, who may be under tremendous stress – such as helping coordinate access to personal protective equipment (PPE) that may be in short supply, or arranging meals to be delivered for staff members – may help the staff have the bandwidth to assist with resident contacts as well.

For those who end up in the hospital, the inability to visit or be present for someone with LBD can be extremely challenging. The change of environment and routine, the potential for developing delirium, and the lack of familiar faces can be especially difficult for LBD patients. The hospital’s supply of PPE is likely what will determine their ability to permit visitors.

Q: I am having a hard time finding assisted living facilities whose staff are experienced with LBD. Do you have any tips about how to educate the staff about working with this patient population?

A: Helen has taught classes to student nursing assistants before, regarding this exact topic. She would bring educational materials to pass around, such as booklets and leaflets, and recommends the Lewy Body Dementia Association (LBDA) website as a good resource. Those on the front lines will be better able to care for someone with LBD if they have the information they need. Offer to facilitate instruction if need be. Also keep in mind that the staff needs to know about “your” person specifically; LBD can present very differently among different people.

In facilities with very large numbers of patients, sometimes it can be difficult for staff not to think of your loved one as “just another person.” You can put together a short bio of your loved one: where they grew up, what family they have, their interests and hobbies, to help humanize them so they are not just their diagnosis.

Q: What if the staff at the facility does not understand LBD? I have tried to give websites and pamphlets but staff were not receptive. There is also a lot of staff turnover, complicating these efforts. My family member has a lot of disruptive sleep behaviors and I would really like to help the staff understand; what can I do?

A: Be persistent; there is often turnover in the direct care staff; hopefully less so in the higher-level nursing staff or activities coordinators. Finding someone on the staff who can be a champion for you would be ideal. If someone can’t spend an hour on the phone with you, maybe you can catch them for 15 minutes here and there. Share information in small, digestible chunks. It’s not a straightforward process, particularly right now during the pandemic.

Try to call and establish a care plan; be proactive rather than waiting out an unsafe situation. Plan for the worst; if it’s a good day, then you’ve got it covered.

Sometimes having a letter from a physician stating that it’s okay to let someone sleep if they need it rather than waking them up for mealtimes, for instance, can release the facility from liability for that particular issue and allow them to tailor the care as needed.

Depending on where your loved one is at with their disease, hospice can also be a great advocate for helping to provide good care and keep them comfortable.