“Cognition in PD and LBD” – Presentation by Stanford MD (Nov 2018)

I stumbled across the slides from a presentation given by Kathleen Poston, MD, movement disorder specialist, Stanford, at a conference for laypeople in November 2018. The presentation is about “cognition in Parkinson’s Disease and Lewy body dementia.”

The slides I like the most are the two slides on the lefthand side of page three of the PDF. I’m constantly talking to caregivers about the balancing act between motor symptoms, cognitive symptoms, Parkinson’s medications, dementia medications, and psychosis medications.



“Little Wished-for Deaths” (beautiful caregiving story)

This is a beautiful story about a woman who cared for her 90-plus year old grandfather with Parkinson’s Disease and dementia.


“Because grief, like death, doesn’t adhere to our constructs. The wished-for deaths of ailing loved ones doesn’t make them any less loved. It only means we hoped for an end to suffering, on both accounts. And deaths that are supposed to be small can sometimes feel big. … The funeral commemorated a life that spanned nearly a century, putting those four years into a birds-eye perspective. They were sometimes burdensome, yes, and sometimes beautiful, but only a small portion of a rich and varied life: of his and mine both.”

The full article is here:


Little Wished-for Deaths
by Mary Pembleton
October 11, 2019
New York Times


“The Soul of Care: The Moral Education of a Husband and a Doctor” (book review)

This is a review of a new book “The Soul of Care: The Moral Education of a Husband and a Doctor” by Arthur Kleinman, MD, a psychiatrist and anthropologist at Harvard.  It is about the “stressful, harrowing, depressing, and rewarding” aspects of caregiving for a spouse with early-onset Alzheimer’s Disease.

Excerpt from this article:

In his new book, [the author] chronicles the harrowing decade he spent caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer’s disease in her 50s.  He describes the process of navigating a health-care system that seemed to offer plenty of clinical care but little compassionate care as she declined from a lively, witty Sinologist to a woman unable to see, dress herself or recognize loved ones. In moving detail, Kleinman tells the story of a husband trying to honor, in the best way he could, his wife’s ultimate wish: “I will not die without dignity.”

You can read the full article here:


Caregiving for a sick loved one can be stressful, harrowing, depressing — and rewarding
By Dhruv Khullar
September 30, 2019 at 6:00 a.m. PDT
Washington Post


“Psychiatric and Cognitive Complications in Parkinson’s

Last week, the Davis Phinney Foundation (davisphinneyfoundation.org) hosted a webinar on “Psychiatric and Cognitive Complications in Parkinson’s.”  The speaker was Dr. Daniel Weintraub, a psychiatrist at UPenn. 

A recording of the webinar is available here:  (must share your email address)


The Stanford Parkinson’s Information & Referral Center took notes from the webinar.  The notes are shared below.  The Q-and-A is definitely worth reading.



Notes from Stanford Parkinson’s Information & Referral Center

“Psychiatric and Cognitive Complications in Parkinson’s”
Davis Phinney Foundation Webinar
Speaker: Dr. Daniel Weintraub, psychiatrist
September 11, 2019

Dr. Soania Mathur, a family physician and a person living with Parkinson’s, was the moderator. Dr. Mathur starts off saying that generally people notice certain changes, as they get older- forgetting someone’s name, forgetting a word, etc. But when we have PD we worry when these symptoms show up that it might be the sign of something more insidious. 

Dr. Weintraub says cognitive changes; both within and out of PD can fall into two buckets: 

Mild cognitive impairment – common in PD, can show up early in the disease course. Includes things such as word finding problems, attention issues, problems multi-tasking and problem solving. Many of these changes don’t progress over time. If they do, it can develop into: 

Dementia – When cognitive impairment becomes severe enough it starts to interfere with day-to-day functioning.  

Dr. Weintraub says we want to identify patients as early as possible in the decline progress. If cognitive changes are stable over time, then you would expect and hope they should not progress. It is when these changes continue to progress or become all encompassing over time that there is worry about a more ongoing cognitive decline. Many patients who have word finding problems, for example, may report these problems years later, but they haven’t gotten worse with time. 

Even in the non-PD population, about half of the population at age 85 can be said to meet criteria of dementia. Main risk factor is just getting older.

Question: How to differentiate between Alzheimer’s and Parkinson’s disease related dementia?

If someone has a PD diagnosis already, they are never diagnosed with Alzheimer’s. Clinically, someone could be diagnosed with PD with dementia or PD with cognitive impairment. We really don’t see Alzheimer’s and Parkinson’s diagnosed together.  If someone has a pre-existing diagnosis of Alzheimer’s, and then develops signs of PD, they are typically diagnosed with Alzheimer’s with a secondary diagnosis of PD. From a clinical standpoint, it is two separate diagnoses. About one-third of PD patients with dementia while alive also meet the criteria for Alzheimer’s at the time of autopsy.  

Question: What is the timeline of the process of cognitive decline?

As you may know, there is so much variability in PD, that it’s hard to make a sweeping generalization of the typical course. Some people develop cognitive impairment early in the disease course, or when it develops it rapidly progresses. But, there are also people who have had PD for 10 plus years who have had very little cognitive decline.  

Question: Is there are a way to predict who may experience significant cognitive decline?

Dr. Weintraub says we are not sure, but certain features may be associated with more rapid or longer-term cognitive features, such as: 
– Males are more likely than females
– People with lower formal education levels
– People who have postural instability gait disturbance subtype of PD (more rigidity in center of body, less classical tremor presentation)
– Certain psychiatric symptoms/ other non-motor symptoms like REM sleep behavior disorder 

Question: Is there any relationship between age of onset/ diagnosis and likelihood of more severe cognitive decline?

Age generally has the most significant impact. The older you are, the older the disease onset, the more likely you are likely to have cognitive impairment and cognitive impairment decline. People with younger age of onset seem to be protected because they don’t get to older age for longer period of time. That being said, looking at autopsy studies looking at brains of people with, though with more widespread brain changes are more likely to have cognitive impairment. Spread from motor area to more, to outer part of brain we associate with cognition, there is association in that regard.   

Question: Are there any co-morbid medical diagnoses that make it more likely for the person with Parkinson’s to have cognitive decline?

Dr. Weintraub says this is an important question while we are still in search of better cognitive enhancement treatment. Co-morbid blood vessel disease is a contributing factor within PD as well as outside of PD.  Conditions such as:
– high blood pressure
– high cholesterol
– high triglycerides 

All factors hopefully have some control over, need primary care management. The more unmanaged these conditions are, the more likely you are to be damaging blood vessels in the brain that contribute to memory and thinking. May not be able to do much about the PD process at this moment in time, but minimizing these other factors.

Complementary piece is cognitive exercise, physical exercise that is meant to enhance overall health including cognitive health. Cognitive exercise includes studies suggest if you engage in intellectual activities (can vary for people, reading, conversation, puzzles, games, etc.) there is some preliminary evidence this may be helpful to cognition. We don’t know if it’s protective or helpful in the long term. But it’s something that is recommended to do. With physical exercise there is some evidence, both with the PD and non-PD population, that it may have short-term cognitive benefits. (Getting your heart rate up 4 to 5 times a week for at least 30 minutes).  

Question: Are there any effective treatments that work well in the context of PD progressing to dementia?

Dr. Weintraub answers that we are currently constrained to using medications that have been tested and approved for Alzheimer’s disease. Two main classes:

– Cholinesterase inhibitors – boosts chemical in the brain called acetylcholine, which has to do with memory and attention. Rivastigmine is FDA approved for PD dementia. These seem to work as well or better for PD than in Alzheimer. Effect is modest on average. 

– Memantine is a different class of medication that affects the neurotransmitter glutamate, which is also associated with memory and thinking ability.  

These are the two FDA approved available agents we have. There are numerous studies currently going on testing a range of medications as well as transcranial direct current stimulation, transcranial magnetic stimulation, DBS, cognitive exercise studies, physical exercise studies. There is a lot of research in the area of cognition and PD. We hope there will be more disease modifying therapies that develop over time, that can slow or halt the disease over time.  

Question: Are there medications that may need to be removed to help cognition?

There are a class of medications called anticholinergics that block acetylcholine, and are associated with worse cognitive performance and more cognitive decline long-term. An example is Benadryl. Sometimes benzodiazepines are needed for anxiety and sleep in PD. These medications can have cognitive side effects and need to be used cautiously. Certain pain medications, specifically narcotics or opiates can have cognitive side effects. If you are on any of these types of medications, it is important to talk to your physician before stopping them.  

Question: If I, or my care partners, suspect that there may be some cognitive issues going on, what do we do next? Who do we go to for help and how will they diagnosis?

Dr. Weintraub would like to see every patient with a PD diagnosis get routine testing. There are screening instruments such as the Montreal Cognitive Assessment (MOCA) that should be given at the time of diagnosis, and given annually. Every year a patient should have a cognitive screening test done, which takes only about 10 minutes. Let your neurologist or movement disorder therapist know what’s going on, and someone in their office should be able to administer a test. A neuropsychologist can do more detailed testing (1-1.5 hour) that will give you an all-encompassing picture of cognitive abilities.  

Question: What advice do you have for care partners who are now facing a future with a loved one with a cognitive impairment?

Dr. Weintraub explains that it’s hard to generalize. Hallucinations (false sensory experience) and delusions (fixed false beliefs) together fall under the umbrella of psychosis, which can occur together with cognitive impairment. As patients become more cognitively impaired, they are more likely to have these hallucinations. Hallucinations and delusions can be accompanied by sleep disturbances or agitation. There can be a snowball effect of cognitive changes, psychosis, poor sleep, agitation or aggression, and this can become unbearable for family members. Dr. Weintraub’s advice is to try to anticipate, and not wait to get help until things are too far advanced and become a crisis. It is harder to make decisions in a crisis situation. Consider whether a durable power of attorney is in place, or advanced directives have been put together. Is there long-term insurance available? Is a day program needed to provide some relief? We hear so much about Alzheimer’s, but PD is such a more complicated and burdensome illness. You have the cognitive changes, at times, but also have neurological complications where patients may be less able to care for themselves physically.  

Question: Does psychosis occur in PD without a cognitive issue?

It can, earlier in the course. Called minor or subtle psychosis. Can be a sense of presence, where someone in is the periphery of the visual field, or illusions, seeing something that is there, but mis-identifying it. A strong predictor of who is going to have psychosis is how much medication you are taking – the more and higher the dosage you are taking, the more likely you may experience psychosis. For this reason, one of the first things the neurologist does is to revisit the PD medications.  

Question: Is this a reflection of the medications themselves or more a reflection of the severity of the disease that the medications are treating?

It’s an interaction. Disease, or age, and medication interaction.  

Question: Depression and anxiety are very common in PD population. How common?

One-third to one-half of people with PD can experience depression or anxiety symptoms. If you are depressed, you are more likely to have anxiety symptoms and vice versa.  

Question: Are there medications that treat depression in the context of PD disease?

Randomized control trials have demonstrated the effectiveness for a couple of the newer anti-depressants, the SSRIs and SNRIs. One of the older anti-depressants, called a tricyclic, have also been shown to be effective. One of the PD medications (dopamine agonist) has been shown to be effective for depression in PD (although not effective for the motor symptoms).  

Question: are there any medications that are normally given to patients with depression that worsen PD symptoms?

There has been some mild concern that SSRIs can worsen tremor, although overall studies show they don’t significantly affect this.  

Question: How do you treat anxiety in PD?

Anxiety is a little more varied than depression in terms of how it presents. There is generalized anxiety, phobia symptoms, and also non-motor fluctuations- as medication dose wears off, motor and non-motor fluctuations can occur with the wearing off. The type of anxiety informs the type of treatment. All the newer anti-depressants are also approved for the treatment of anxiety disorders. Since they are safe and well tolerated over all, we tend to use these first. Sometimes we use anti-anxiety agents. They have to be used cautiously, but this may include Clonazepam, used for REM sleep disorder, Lorazepam, or Xanax.   

Question: can you describe what an impulse control disorder is and how to recognize?

These problems are more common than we once thought and can be difficult to deal with. This is the disorder that is most strongly associated with PD medication use. The medication class most strongly associated with it are the dopamine agonists, though other medications can contribute. The four main impulsive control disorders are:

– Gambling
– Sexual behavior
– Buying
– Eating

It can take the form of any activity that a person is engaging in to excess, or an excess of what they would’ve done before.  

Question: What can we do about this, if a care partner notices a change in behavior?

The neurologist would typically want to take a look at dopamine replacement therapies, which might need adjustment. Sometimes people might be referred to DBS at this point, as it might be difficult to make adjustments to medications. Occasionally we use psychiatric medications to help treat, such as SSRIs. 

At the very end of the time, Dr. Soania Mathur says with most things with PD, it’s really a team approach. (movement disorder specialists, social workers, neuropsychologists, OT, PT, speech therapist, psychiatrist, etc.) She ends by reminding folks to focus on today and celebrate their daily victories. 

“Evaluating/Treating Urinary Issues in PD, MSA, etc” – Webinar Notes + Recording

Brain Support Network and Stanford University co-hosted a webinar Friday, August 23, 2019 about “Evaluating and Treating Urinary Issues in Parkinson’s Disease, Multiple System Atrophy, and the Other Atypical Parkinsonism Disorders.” The webinar focused on urinary incontinence, overactive bladder, urinary retention, and other urinary issues in Parkinson’s Disease, multiple system atrophy, Lewy body dementia, progressive supranuclear palsy, and corticobasal degeneration. MSA, LBD, PSP, and CBD are atypical parkinsonism disorders.

Organizer’s note: Urinary issues in LBD, PSP, and CBD are very similar to urinary issues in PD. But the urinary issues in MSA can look a lot different than the urinary issues in PD, etc.



The webinar recording can be found here —




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For additional information on the topics addressed during the webinar, see:

Urinary issues in Parkinson’s Disease

Urinary issues in Multiple System Atrophy

MSA, LBD, PSP, and CBD (including a list of Top Resources from around the world) –

IN THE US – Finding knowledgeable healthcare professionals for PD, MSA, LBD, PSP, and CBD –

IN NORTHERN OR CENTRAL CALIFORNIA – Finding knowledgeable healthcare professionals for PD, MSA, LBD, PSP, and CBD –

Make an appointment with Dr. Ekene Enemchukwu or other neuro-urologists at Stanford –
Call 650-723-3391

IN THE US – Brain donation to support Parkinson’s, MSA, LBD, PSP, and CBD research



Stanford employee Adrian Quintero took notes from the webinar.

Evaluating and Treating Urinary Issues in PD, MSA, and Other Atypical Parkinsonism Disorders
August 23, 2019

Speaker: Ekene Enemchukwu, MD. She is a neuro-urologist at Stanford University with wide expertise in treating those with PD, MSA, LBD, PSP, and CBD.

Host: Candy Welch. Candy’s husband Bob was diagnosed with MSA (which was later confirmed through brain donation). Bob’s first and most severe symptoms were urinary issues. Candy is a Brain Support Network Board member and coordinates MSA caregiver support group in Northern California. She speaks at support groups and conferences on the importance of brain donation for research.

This webinar will address these topics:
• Overview of urinary incontinence, retention, neurogenic bladder, nocturia, enlarged prostate
• What’s the relationship between urinary issues and constipation?
• How do urinary issues in MSA compare to those in PD?
• What treatments are available –conservative, medication, and surgical?



#1 Overactive bladder symptoms are the most common.
* Urinary urgency (~55%): A “sudden urge” to go the bathroom that you can’t ignore.
* Urge incontinence (~30%): Some people leak urine—a few drops or a gushing amount, after this “gotta go” feeling.
* Urinary Frequency (~35%): Going to the bathroom frequently (more than 8 times in 24 hours).

#2 Nocturia (up to 90%)
* Getting up 1 or more times at night to urinate
* Often associated with Sleep disorders (Sleep cycle disorders, Restless leg, Insomnia) –up to 80%

#3 Difficulty with bladder emptying
* Weak Stream, Urinary hesitancy
* Slow Sphincter muscle (up to 42%)
* Enlarged prostate or a prolapsed bladder can make bladder emptying even harder

#4 Urinary Retention
* Inability to urinate requiring catheterization
* Weak bladder muscle
* More common in MSA

These urinary tract symptoms can range from mild to severe. Can have significant impact on quality of life

Present in up to 65% of patients with Parkinson’s Disease. Women > Men

Onset of urinary symptoms:
* PD: Typically start after onset of motor symptoms
* MSA: Often start before onset of motor symptoms

There is a lot of overlap between symptoms in PD and MSA, such as:
* Urinary Frequency
* Urgency
* Urge related incontinence
* Weak Stream
* Straining to Void
* Feelings of incomplete emptying

PD: see more of urinary hesitancy.

MSA: see more more constant urinary incontinence.


With normal bladder function, when the bladder is full, it sends a signal to our nervous system to let us know it’s full. Then, the brain checks to see if it’s an appropriate time to urinate. If it is, the bladder will contract, the sphincter muscle will relax, and the bladder will empty.

In Parkinson’s disease and multiple system atrophy, the brain’s signals to the bladder are lost. The bladder may or may not be full. It sends a signal to the nervous system, and the brain isn’t really involved. What happens is the sphincter muscle relaxes very slowly; the bladder empties very slowly and incompletely.

In MSA: The sphincter muscle does not function well
* It does not close completely during bladder filling
* It does not relax completely during urination
* It does not relax at the appropriate time (involuntary relaxation)


The Urologist’s primary goals for their patient with Parkinson’s disease and Bladder symptoms:
* Improve urinary continence
* Improve bladder emptying
* Prevent urinary tract infections (UTIs)
* Protect the kidneys from damage and swelling
* Improve overall quality of Life

This is done through an evaluation:
* Urinalysis +/-Urine culture
* Bladder scan, Urine flow test
* Bladder Diary, Questionnaires, including: High fluid intake/output; High urine production at night
* Urodynamics (bladder function test) for severe symptoms


This is a bladder function test, kind of like an EKG for the bladder. Doctors place a tiny catheter in the bladder, fill the bladder with water or contrast, try to reproduce symptoms to find out cause.

Urodynamic Evaluation:
* Measures Bladder Pressure
* Measures Ability To Store Urine
* Evaluate Sphincter Function
* Evaluate Bladder Function & Emptying

Your Urologist will review the results and make recommendations.

PD and MSA: Common Bladder function test results:
* Overlaps: Involuntary bladder contractions
* PD: Slow/Delayed sphincter muscle relaxation
* MSA: Involuntary/ Incomplete sphincter relaxation; Weak bladder contraction


Conservative therapies (no side effects) include:
* Timed voiding
* Fluid/dietary changes
* Double voiding
* Handheld urinal
* Bedside commode
* Condom catheters. Must empty bladder adequately!
* Pads/Diapers
* Avoidance of constipation

Fluid Management
* Avoid dehydration
* Avoid overhydration (follow neurologist’s recommendations)
* Avoid bladder irritants: coffee, spicy foods, citrus, carbonated drinks, alcohol


PD can slow down bowels and cause constipation. Hard stool in the rectum can push on the bladder or urethra and make it more difficult to urinate.

The goal is to have a soft bowel movement everyday to every other day. Can talk with doctor about support such as laxatives.


Conservative therapy – Bedside Commodes
* Good for people with poor or slow mobility
* Good for overnight urinary frequency (nocturia)

Conservative therapy – Pads, Diapers, and Bed Pads
* Option for patients who do not wish to undergo procedures or have failed other therapies.
* There are very discrete options available, that come in a range of sizes and absorbency
* Sometimes insurance pays for these products. Check to see if they cover all or part of the cost.

Conservative therapy – External Catheters
* Option for people who are able to empty their bladders appropriately
* Not for use in people with urinary retention


Generally look to medication options. Two categories:

1. Anticholinergics
Help calm the bladder
Side effects: dry mouth, dry eyes, and constipation
Can cause confusion in elderly patients

2. Beta 3 Agonists
Also helps to relax the bladder, works on a different receptor, doesn’t cause dry mouth, potential confusion.
However, can cause mild elevation in blood pressure


Move on to advanced therapies. These include:

#1 Sacral Neuromodulation (Interstim- like a pacemaker for the bladder)

– Urgency/Urgency Urinary Incontinence
– Fecal Incontinence
– Non-obstructive Urinary retention
– Off label for neurogenic bladder

Two short (<1 hr) outpatient procedures:
– Safe, modifiable, reversible, low complication rates
– Success rates: small studies suggest similar success rates in patients with overactive bladder and Parkinson’s patients.

#2 Percutaneous Tibial Nerve Stimulation (Ptns)

FDA approved for urinary urgency, urinary frequency and urge incontinence in 2000.

Off label for neurogenic bladder

Outpatient clinic setting
– A 34-gauge “acupuncture like” needle
– Requires 12 weekly treatments
– 30 minutes per session
– Safe, success rates ~50% in non-Parkinson’s patients (not well studied in PD patients)

#3 Onabotulinum Toxin A (aka Botox)

FDA approved for management of neurogenic OAB in 2011.
– High success rates
– High patient satisfaction rates
– Lasts ~6-12 months

Side effects include UTI and incomplete emptying.


There are multiple causes:
– Weak bladder (underactive bladder)
– Slow sphincter (External sphincter bradykinesia)

Management options:
– Medications
– Clean intermittent catheterization (CIC) –challenging
– Suprapubic tubes
– Indwelling foley catheter


Silodosin (Rapaflo)
Alfuzosin (Uroxatrol)
Doxazosin (Cardura)
Terazosin (Hytrin)

Common Side effects:
– Dizziness, fainting
– Orthostatic Hypotension (have to be very careful in PD patients)
– Retrograde ejaculation
– Headache
– Nasal congestion/Rhinitis

Special Considerations:
– Take before bedtime (reduce dizziness)
– Use handheld/bedside commode to avoid falls
– May worsen incontinence in people with MSA


Clean intermittent catheterization (CIC) – challenging for patients to do independently. Goes in, drains bladder, then removed, can stay in up to 4 weeks at a time.

Suprapubic tubes – bypass urethrae, gone in through low part of stomach, avoids urethra irritation

Indwelling foley catheter


Other potential causes:
* Enlarged prostate in men
* Bladder prolapse in women
* Urethral strictures (scar tissue)

Management options:
* Surgery to correct the obstruction
* Transurethral resection of prostate (TURP). Avoid in MSA, will worsen incontinence
* Pessary (put in vagina to help hold bladder up) or Pelvic organ prolapse repair
* Correction of urethral stricture


Definition: Waking up one or more times per night to urinate

* Bladder Diary
* Medication review
* If taking diuretics, take mid to late afternoon, six hours before bedtime
* Physical Exam. Evaluate for leg swelling

Conservative management options:
– Leg elevation (if leg swelling)
– Lower leg compression hose
– Fluid restriction in the evening
– Pee before bedtime
– Avoid bladder irritants in the evening
– Bedside commode/handheld urinal
– Improve sleep quality/sleep hygiene
– Treat sleep apnea, if present
– Sleep aids, medications
– Quiet environment, dark room
– No caffeine in the evening

* Overactive bladder medications
* Afternoon diuretic (if leg swelling)
* DDAVP (Desmopressin – helps to reduce urine production overnight) if high urine production at night on bladder diary (nocturnal polyuria). Side effects: Low sodium levels in your blood (5%), headache, insomnia


Some common risk factors for UTIs in neurogenic bladder:
* Incomplete bladder emptying (bacteria sits in stagnant urine and can cause infection)
* Urinary catheters (foreign object in the body)
* Poorly controlled Diabetes
* Kidney stones, urinary tract surgery
* Menopause, female anatomy

Some UTI prevention strategies
– Hydration – very good for the bladder, helps flush out any bacteria
– Cranberry supplements
– D-Mannose powder
– Vitamin C
– Methenamine (Hiprex) – like an antiseptic for the urine
– Daily low dose antibiotics (works for a limited amount of time)
– Bladder irrigation (for patients with catheters)
– For Postmenopausal women: Vaginal Estrogen Replacement (changes ph of vagina). Estrace cream; Premarin cream; Vagifem


See an Urologist (and Gastroenterologist, if needed) to further discuss your management options.



Is the bladder not getting the message from the brain?

The part of the brain that helps to control the bladder is affected by PD and atypical Parkinson’s. The brain is no longer part of the equation, or else the signal isn’t strong enough to contract bladder muscles.

Is urinary incontinence an early sign of neurological illness, dementia, Parkinson’s, or something else?

Can be caused by a number of things; important to talk to a doctor and be examined. There are different types of incontinence (such as incontinence that comes about from pregnancy and childbirth).

As PD progresses, if you already have urinary issues, will they continue to progress or might they level off?

Often the urinary symptoms will progress. There are different patterns, and it can change over time. For example, you could start off with frequency and urgency to the bladder not emptying well.

Any effective treatment for the PSP patient who feels the need to urinate every 1.5-2 hours throughout the day and night?

It is worth trying conservative therapies. Often medication and further bladder testing is needed to determine the cause and target therapy better.

My mother has LBD. She has no liquids at night and voids her bladder before bed. Yet, at night, she floods the bed with a very high quantity of liquid. How can this happen?

This can be due to a few things. It can be the sphincter isn’t working properly, or the bladder is spastic. It can be that the bladder isn’t capable of storing urine overnight. Kidneys produce urine overnight; they are like waterfalls constantly dumping urine into the bladder. So even if it’s emptied, within a few hours there will be urine there.

What treatments are available for overnight incontinence?

Need to determine what is the cause- the sphincter? The bladder? Pads and diapers overnight can be helpful.

Why is my husband unable to tell that he needs to urinate during the day but wakes up at night and uses the toilet?

Often, patients with PD and atypical Parkinson’s will have sleep disorders. So is often a combination of a sleep disorder as well as bladder issue.

How can we as caregivers cope with night urgency and frequency?

Bedside commodes and urinals are often helpful, especially if loved one can wake up and sense they need to urinate.

What are the symptoms of UTIs in those with PD?

Similar to people who do not have PD. The sensation (burning) should be the same. The frequency and urgency part could be because of PD, but it, along with incontinence, will often become worse with a UTI.

My mother has CBD. When she has a UTI, her mental status changes. Why?

This is a very common thing in elderly patients, they present differently when they are sick.

What’s your opinion of prophylactic antibiotics to prevent UTIs? (My mother has PSP and a catheter. The UTIs she’s had are nearly deadly.)

It is effective, but for a limited period of time. Eventually the bacteria will become resistant to the antibiotic. This can be dangerous because if there are other infections that a loved one develops, there become less options for treating that infection.

What can be done to prevent recurring UTIs?

Hydration is very important, emptying bladder as much as possible, cranberry tablets has been shown in some studies to be effective, prophylactic antibiotics.

My hubby w/MSA has had 6 UTIs this year, one of which went septic. He is colonized with pseudomonas. How do I keep him healthy?

Septic means bacteria from his bladder went into the blood system. Being colonized mean antibiotics don’t really clear the infection, or only temporarily. Pseudomonas is a tricky bacteria, and would be good to talk with an infectious disease doctor.

How do we know when urine becomes colonized?

Generally, this is when we check your urine, and there aren’t UTI symptoms at that time, but bacteria is present. For example, each time checked there is a strain of ecoli, but not UTI symptoms that are causing inflammation, pain, and infection. Urine tests should only be taken when patient is having symptoms of UTI.

My husband has Parkinson’s and a catheter. Recently, bladder stones have blocked the catheter, causing overflows. What can we do?

The stones need to be treated. He should see an urologist to see if they can be removed by being flushed out, or if there is need to remove them surgically. The stones form because of stagnant urine in the bladder. Need to flush/ irrigate bladder regularly.

My father has a Foley in-dwelling catheter but there’s still urine leaking out. We were told this is due to bladder spasms? What are those and how can they be treated?

Bladder spasms are involuntary contractions. Happens forcefully enough to push urine out around the catheter. It can be caused by the catheter itself, or a neurologic condition. There are oral medications to take to try to calm the bladder, or Botox can be injected in wall of bladder to help calm it.

Why does a catheter continually cause UTIs?

Tricky question. Any time you are placing a catheter, there is potentially some bacteria going into the bladder. When you have a catheter, you are at increased risk for UTI compared to someone who does not have one. If you are not emptying the bladder well, you are also at increased risk for UTI.

Any issues with prolonged external catheter use?

It can cause bruising and breakdown of the skin. As long as you are giving the skin enough time to recover between uses, this shouldn’t be an issue. Also it’s important to make sure the external catheter is sized correctly and isn’t too tight.

Can these urinary symptoms be intermittent?

They can come and go, but for the most part, once they are there, they are there.

How do medications for urinary issues effect blood pressure?

Medicines that help relax the sphincter and the prostate, they can lower blood pressure. She rarely uses them in people with PD. Also in people with MSA they can make the incontinence worse.

Is frequently urinating to the point of losing electrolytes an issue in MSA?

Electrolytes are elements in the blood that help to keep things balanced (sodium, potassium) Urinating frequently is generally not usually due to overproduction of urine (by the kidneys). It’s usually due to an inability to store urine in the bladder. Overproduction is pretty rare, but if that is happening, that can affect electrolytes, and would need to be evaluated by a kidney doctor.

I have to get up once (only) in the middle of the night to urinate, am concerned about falling, and have trouble getting back to sleep. Would I be a candidate for something like desmopressin?

If the concern is about falling, she would recommend using a bedside urinal or commode. Desmopressin is better for people who have to urinate frequently at night, who over produce urine at night (you would need to complete a 3-day bladder diary to try to determine if there is overproduction at night).

Can you address bladder re-training to hold more before having to go?

Bladder retraining is when you get the urge to go, you try to ignore it, and try to get the bladder to hold longer before going. This doesn’t work in people PD or atypical Parkinsonism, because the brain isn’t included in the decision to contract the muscles. What would likely happen with someone in this scenario is they would have an accident.

What exercises are helpful, if any, for treating PD-related urinary incontinence?

There is pelvic floor physical therapy in general. Often she find it’s not helpful in PD, because the sphincter isn’t working properly to begin with. Part of the issue for people with PD is the sphincter doesn’t relax quickly enough. She doesn’t recommend for people with PD.

Can bladder training work if there is dementia?

No, a loved one really needs to be aware of everything going on, the goals, etc.

Can mindfulness or meditation help with anxiety about incontinence?

It can help with the anxiety, but it will not help the incontinence itself.

What is the future for incontinence without drugs?

Some of the advanced therapies previously discussed. There are other devices that are coming out, hopefully will have some soon that are safe and compatible with MRIs. Some devices that go underneath the skin and can be managed at home.

How do you distinguish neurological causes vs. BPH (benign prostatic hyperplasia) in men?

Generally, with the initial evaluation, which includes checking the size of the prostate, answering questions, and a bladder scan. If any of these things are abnormal, she recommends bladder function test which often will answer the question.

How do Parkinson’s disease and chronic kidney disease affect each other?

Don’t know of any correlation between the two. However, with PD, if you are not emptying the bladder well, it can make chronic kidney disease worse.

Do urinary problems present and progress differently depending on PD vs. MSA or other atypical Parkinsonism disorders?

With MSA and other atypical Parkinsonism, the urinary problems progress more quickly, and are often are more severe.

How do I find an urologist experienced in neurological issues?

Start by talking to neurologist. Just about every academic medical center will have someone trained in these issues.

How do I speak to my neurologist about urinary issues?

It’s important to let them know you are having these issues. Often the other symptoms take up the time of the visit. The neurologist may try some of what has been talked about today, or refer you to an urologist.