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.
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RECORDING
The webinar recording can be found here —
https://www.youtube.com/watch?v=rPulXhZYaX8
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SURVEY
If you listen to the webinar recording, please take LESS THAN TWO MINUTES to answer six questions on our survey. See:
https://www.surveymonkey.com/r/VYZHB3W
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FUTURE WEBINARS
To be alerted to future webinars on MSA, LBD, PSP, or CBD, join one of Brain Support Network’s email lists –
www.brainsupportnetwork.org/join
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RESOURCES
For additional information on the topics addressed during the webinar, see:
Urinary issues in Parkinson’s Disease –
parkinsons.stanford.edu/incontinence.html
Urinary issues in Multiple System Atrophy –
www.msatrust.org.uk/wp-content/uploads/2015/11/FS103-V1.2-Continence-in-MSA-1.pdf
MSA, LBD, PSP, and CBD (including a list of Top Resources from around the world) –
www.brainsupportnetwork.org/msa
www.brainsupportnetwork.org/lbd
www.brainsupportnetwork.org/psp
www.brainsupportnetwork.org/cbd
IN THE US – Finding knowledgeable healthcare professionals for PD, MSA, LBD, PSP, and CBD –
apdaparkinson.org/community
IN NORTHERN OR CENTRAL CALIFORNIA – Finding knowledgeable healthcare professionals for PD, MSA, LBD, PSP, and CBD –
parkinsons.stanford.edu
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 –
www.brainsupportnetwork.org/brain-donation
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DETAILED NOTES – PRESENTATION
Stanford employee Adrian Quintero took notes from the webinar.
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?
DR. ENEMCHUKWU’S PRESENTATION
URINARY SYMPTOMS ARE VERY COMMON
#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.
THE BRAIN, NERVES & BLADDER HAVE TO WORK TOGETHER IN ORDER TO STORE & EMPTY URINE
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)
MANAGEMENT GOALS
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
VIDEOURODYNAMICS: BLADDER FUNCTION TEST
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
MANAGEMENT OF PD AND MSA BLADDER SYMPTOMS
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
PARKINSON’S DISEASE CAN EFFECT THE BOWELS TOO!
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 THERAPIES
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
WHEN CONSERVATIVE THERAPIES ARE INEFFECTIVE…
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
WHEN BEHAVIORAL THERAPIES AND MEDS ARE INEFFECTIVE…
Move on to advanced therapies. These include:
#1 Sacral Neuromodulation (Interstim- like a pacemaker for the bladder)
Indications:
– 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.
URINARY RETENTION
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
PROSTATE/SPHINCTER RELAXING MEDICATIONS
Medications:
Tamsulosin(Flomax)
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
CATHETERS
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
INCOMPLETE BLADDER EMPTYING
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
NOCTURIA
Definition: Waking up one or more times per night to urinate
Evaluation:
* 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
Medications:
* 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
URINARY TRACT INFECTIONS (UTIs)
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
NEXT STEPS
See an Urologist (and Gastroenterologist, if needed) to further discuss your management options.
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QUESTIONS AND ANSWERS
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.