“Managing Swallowing Changes” – CurePSP webinar notes

In late June 2022, CurePSP (curepsp.org) hosted a webinar on “Managing Swallowing Changes in PSP, CBD, and MSA” with Stanford speech language pathologist (SLP) Julie Hicks. Her presentation provided general information about working with an SLP, what a swallowing evaluation looks like, and what treatment might involve. In the question-and-answer period, Julie Hicks addresses when to see an SLP, the use of feeding tubes, practical tips families can use to help people slow down and control impulsivity while eating, and how to find an SLP with experience treating those with parkinsonism disorders.

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Symptoms and biomarkers predicting mortality in parkinsonism

Since parkinsonism disorders can be confused for each other — Parkinson’s disease, Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and vascular parkinsonism — especially early on in the disease process, perhaps more important than the clinical diagnosis is the prognosis.

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“Common thread, silver bullet, naïve hope?” (Dr. Golbe’s musings)

Dr. Larry Golbe, a world-renowned expert on progressive supranuclear palsy (PSP), has his own blog (psp-blog.org) to which he occasionally publishes insights into the latest research.

In late March 2022, he published about two papers he read on the protein TMEM106B.  He says, “This stuff is known to be a component of healthy lysosomes and endosomes, components of the cell’s garbage disposal mechanism.”

[One paper] found that the brains of healthy elderly persons have abnormal aggregates of a misfolded form of the protein TMEM106B.  These abnormal aggregates were found “even more abundantly in a raft of neurodegenerative diseases: Alzheimer’s, CBD, multiple types of FTD, Parkinson’s, dementia with Lewy bodies, multiple system atrophy and multiple sclerosis.”

The second paper (authors from Columbia University, Mayo Clinic Jacksonville, etc) “found the same TMEM106B aggregates” in those with PSP.

Dr. Golbe says,

An interesting finding is that unlike tau, TMEM106B misfolds the same way in all the diseases analyzed so far.  This may have huge potential implications: if (and this is a big “if”) the misfolded TMEM106B plays an important role in the formation of the misfolding and toxicity of tau and the other disease-specific proteins, and if (another big “if”) this misfolding is the rate-limiting step in the loss of brain cells in the neurodegenerative disorders, THEN preventing TMEM106B from forming or from misfolding, or targeting it with antibodies or drugs could be the silver bullet that prevents all of these diseases, PSP included.  That could be a naïve hope…

Read Dr. Golbe’s blog post:

“Common thread, silver bullet, naïve hope?”
Dr. Larry Golbe
March 16, 2022

Let’s hope!

2021 Brain Support Network Caregiver-only Support Group Meeting Dates

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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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.