The Michael J. Fox Foundation (michaeljfox.org) hosts webinars every third Thursday on various Parkinson’s Disease (PD) topics. The April 2017 hour-long webinar was on urinary symptoms in PD. The speakers addressed how PD affects the autonomic nervous system, including bladder functions; how urinary problems are diagnosed and managed; and the latest in research.
Certainly many in the Brain Support Network community cope with urinary symptoms. During the webinar, alpha-synuclein is mentioned. Both multiple system atrophy and Lewy body dementia are disorders of alpha-synuclein.
The webinar recording is available online here:
(You’ll need to register first to obtain access to the recording.)
Brain Support Network volunteer extraordinaire Denise Dagan listened to the webinar and took notes. Her notes are copied below.
Sorry but the Fox Foundation doesn’t announce its webinar presenters in advance, and that information is not posted to its website. So I’m unclear who all the presenters were. One of the presenters is Dr. Maria De Leon, is a retired movement disorder specialist who also has Parkinson’s Disease. Other presenters were Dr. Miyasaki and Dr. Juncos. The moderator is always Dave Iverson, a journalist who has PD.
Robin
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Denise’s Notes
Urinary Problems in Parkinson’s Disease
Michael J. Fox Foundation Webinar
April 20, 2017
The Autonomic Nervous System Controls the Body’s Automatic Functions:
* Blood pressure
* Heart rate
* Temperature
* Digestion
* Sexual function
* Bladder control
Constipation can affect bladder control. Urinary and sexual function are under treated because symptoms are attributed to aging, rather than to Parkinson’s disease.
Autonomic Problems are Common in Parkinson’s:
* Up to 80% of people with PD may experience an autonomic symptom during their disease course.
* Autonomic symptoms are likely due to the underlying disease process of Parkinson’s, but can be worsened by certain PD and other medications.
* The protein alpha-synuclein, which misfiles in PD, may play a role in autonomic dysfunction.
Alpha-synuclein not only collects in, and damages, the brain, but affects the periphery of the nervous system as well (ganglia and nerve roots of the autonomic nervous system) leading to the degeneration of those nerves. Most of the symptoms caused by this degeneration can be managed, including by PD meds that treat motor symptoms. Sometimes these meds make autonomic symptoms worse. Tell your Dr. so he/she can adjust meds for best autonomic symptom treatment.
In general non-motor symptoms tend to cluster together. Over time people accumulate more non-motor symptoms, including autonomic symptoms. There needs to be a balance of symptom treatment with medications -vs- side-effects of those medications.
PD Urinary Problems May Include Difficulty Holding or Emptying Urine:
The bladder stores and empties urine. In Parkinson’s, the brain’s control of the bladder is disturbed.
* Difficulty holding ruing may lead to:
— Strong urges to urinate
— Increased frequency of urination, especially at nighttime
— Accidental loss of urine (incontinence)
* Difficulty emptying urine could cause:
— Hesitancy when starting urination
— Weak stream
— Feeling of incomplete bladder emptying
* Difficulty holding and emptying urine can lead to urinary tract infections.
Dr. DeLeon initially experienced increased urgency. 10 years into her diagnosis she has discovered it is not one single factor causing bladder problems. Not just worsening PD, or needing medication adjustment, but aging, diabetes, prostate enlargement, etc., comes into play.
Most common urinary symptoms in PD:
* Irritative symptoms – noctural frequency, daytime urgency, incontinence (leaking), daytime frequency
* Obstructive symptoms – hesitancy, poor flow, incomplete emptying
* Aging contributes to all of these symptoms.
How do you sort out what’s caused by PD and what’s due to aging, enlarged prostate, etc.?
* Best practice in diagnosis is building a multidisciplinary team to determine what is going on with the patient.
* Uro-dynamics is a test whereby the bladder is filled and its function is monitored.
– In overactive bladder any amount of content causes contraction, urgency, therefore frequency.
– In obstructive bladder there is difficulty in flow. When caused by enlarged prostate, it can be treated with meds and/or surgery.
* Treatment begins with least invasive to more invasive.
Have an open conversation with your physician about urinary issues because most symptoms have a treatment if the cause can be determined. Patients should not assume new urinary difficulties are associated with PD and/or aging, but mention it to your doctor and be persistent, especially if it becomes a quality of life issue for yourself or your caregiver/family. Keep track of your urinary behaviors and symptoms to best help your doctor(s) determine the cause of your bladder and constipation issues.
(Dr. DeLeon found her constipation was causing bladder obstruction, so treating the constipation eased bladder issues).
Another issue is difficulty with movement impeding getting to the toilet in time, getting clothing closures undone in time, etc. due to increasing PD symptoms.
Listener question about his mother having frequent urinary tract infections. In reply, an MD says incomplete emptying of the bladder is common in people with PD due to improper functioning of the bladder muscles, especially in older men due to enlarged prostate. Leaving urine in the bladder is the perfect medium for bacterial growth and resulting in frequent urinary tract infections (UTI). These can be treated with antibiotics, even chronic prophylactic antibiotics (although this puts you at risk of antibiotic resistance), and surgical intervention. Elderly people can not realize they have a UTI, which can adversely affect PD symptoms, PD medications don’t work as well, and seem just as though they are having a bad day because the older you are the less prominent the symptoms of s UTI. Systemic UTI (beyond the bladder) can cause confusion, hallucinations, and ER visits. Because of this, UTI must be in the fore of your mind when and older person with PD is feeling under the weather.
Treatment Targets the specific Urinary System:
Difficulty holding urine
> Non-pharmacologic
– Pelvic floor exercises
– Limit fluids/caffeine, schedule bathroom breaks, use incontinence aids
> Pharmacologic
– Medication to relax the bladder
– Botulinum toxin injections
Difficulty eliminating urine
> Pharmacologic
– Medication to stimulate bladder emptying
– Evaluate current drugs to ensure none contribute (e.g., Artane/trihexiphenidyl)
> Non-pharmacologic
– Intermittent catheterization
* Consider seeing a urologist or other doctor with expertise in the urinary system to compete urodynamic testing and determine if symptoms are from Parkinson’s or other issues.
* Tracking symptoms can be useful in managing these problems.
Listener question: How do PD meds complicate urinary problems, particularly frequency? MD answer: Generally, PD meds do not cause bladder problems. Used to use anti-cholinergics (for people with tremor), including Amantadine, which can result in urinary retention or inability to void. Other meds for non-motor symptoms, like depression (Mertazapine) has anti-cholinergic affects, as well.
Also, low blood pressure during the day can result in having to get up frequently at night to pee because sitting and standing the kidneys don’t have high enough blood pressure to produce urine, and laying down at night increases blood pressure and allows kidneys to produce urine and fill the bladder.
How does one reconcile conflicting advice about staying hydrated to maintain blood pressure, and limiting fluids to compensate for difficulty in holding one’s urine? Fluids help with constipation, which affects your ability to void. After 6:00pm don’t drink a lot of fluids to minimize nighttime urination.
Dr. DeLeon contributes fluids are especially important during the hot months of the year, but during the daytime. Also avoid caffeine, chocolate, and spicy foods which can all make you pee more often.
Pelvic floor exercises are often prescribed for women with respect to birth. Try to stop the stream while you pee to find the muscles to exercise. Don’t do this while you pee to prevent urine retention and UTIs. Both men and women should do this exercise several times to a count of 10 throughout the day to strengthen pelvic floor muscles. This prevents leakage and helps to void completely.
What medications can be helpful?
– What can be aggravating the situation so can be eliminated or modified to improve the situation, especially diuretics, opioids, amantadine, anti-cholinergics, calcium channel blockers. Work with the physician team to adjust medications.
– Other medical conditions that can aggregate bladder symptoms, like BPHD, atrophic vaginitis, prior abdominal surgeries, how many children you have had, sleep disorders, diabetes, venus insufficiency, etc.
– Medications to help the bladder relax or minimize irritation and contracting before getting to the toilet. These are anti-cholinergics but not those that stimulate the bladder. There are many choices, like Detrol, or Vesicare, which has been studied on PD patients. There are potential side-effects. Beta3 receptor, Myrbetriq, works but may cause high blood pressure.
– Medications to improve emptying by relaxing the sphincter (Flomax, Rapiflow) and reducing the size of the prostate. Some of these drop blood pressure more than others.
– In PD patients with motor fluctuations, minimizing OFF periods reduces urge to empty the bladder, especially when one cannot move well.
Dr. DeLeon commented about what’s been most helpful, personally. Many women tend to have greater risk of UTI and urgency from taking Azilect, but it helps her with pain so she has to find a way to work around balancing symptom treatment. She was taking Myrbetriq and anti-spasmotic, but everything (even behavior therapy) only helps for awhile. Dopamine can inhibit release of insulin and found she was becoming insulin resistant. Even though she is not diabetic, she is on blood sugar medication, which stopped her bladder problems and she was able to stop taking Myrbetriq.
Dave asked Dr. Miyasaki about connection between blood sugar levels and bladder issues. There is a close connection between the brain and the gut, including the pancreas. Adding an endocrinologist to your care team is warranted. PD patients have an increased risk of diabetes, statistically, but the reason is unknown. Some diabetes meds increase kidney excretion of glucose resulting in urinary frequency.
Ongoing Research into Urinary Problems and Parkinson’s
* Trials are investigating the brain mechanisms involved in overactive bladder, as well as varied treatments.
> Medications = e.g., Melatonin
> Behavioral modifications = pelvic floor exercises, and Bladder routine/schedule
> Transcutaneous electrical nerve stimulation = Non-invasive stimulation of lower leg nerves through skin device.
Dr. Miyasaki agrees that starting with the least invasive treatments is wise. Melatonin has multiple benefits to patients, especially for sleep. It is difficult to determine the benefit of behavior modifications, but they are not harmful and can be beneficial so they are worth a try. There are reports that transcutaneous electrical nerve stimulation help with both frequency and difficulty emptying. People with PD can have a less common disorder where the sphincter of the bladder will not relax. It can be quite painful and risks UTIs. People who have had DBS report better sleep and less urinary frequency, especially at night.
Q&A
More questions about how much fluid and when it should be consumed?
8oz, 6-8 times daily until 6:00pm – depending on whether you are taking diuretics.
Any connection between bladder problems and development of kidney stones?
If you’re not able to void regularly you may develop kidney stones, but they have more to do with your body eliminating various minerals or whether you’ve had repeated infections. If you are well hydrated, kidney stones shouldn’t be a problem.
Dr. Miyasaki feels strongly that your neurologist is connected with other specialists so each patient has a multidisciplinary care team, especially those who are interested in treating Parkinson’s disease within their specialty, like urology, and see a volume of patients to really develop an expertise in treating Parkinson’s patients overall.
Dr. Juncos doesn’t want people to forget Botox can be tremendously beneficial to urinary treatment (and other non-motor symptoms) in Parkinson’s disease and can be used repeatedly. Also, men are offered prostate surgery to reduce urinary obstruction, but that will not treat the autonomic symptoms, so what level of benefit can they expect from the surgery? Ask a lot of questions before you do the surgery.
Dr. DeLeon reminds people there are many treatment options for urinary issues and there is no reason to be embarrassed. Bring it up with your doctor and be patient in determining the problem and treatment. Keep the symptom diary for ALL PD symptoms. It is infinitely useful in your own PD care.