Lewy Body Dementia Panel Discussion – Notes (June 30 Event Hosted by FCA and BSN)

At the end of June, Brain Support Network (BSN) was proud to co-host a panel discussion with Family Caregiver Alliance (FCA) about Lewy body dementia (LBD). The panel discussion followed the showing of the film “SPARK: Robin Williams and his Battle with Lewy Body Dementia,” produced by the Lewy Body Dementia Association (LBDA). Many of these panel discussions have been held this summer.

One unique aspect of FCA’s and BSN’s panel discussion on June 30th is that it featured two caregivers to those with Lewy body dementia, where the LBD diagnosis was confirmed through brain donation. Additionally, the panel discussion included Dr. Bruce Miller of UCSF’s Memory & Aging Center, who was featured in the film.

The film delved into the known science and research of the disease, getting a diagnosis, and the impacts to the person with LBD and their family caregiver.  The panelists discussed:

  • The confusing terminology — Lewy body dementia, diffuse Lewy body disease, Parkinson’s disease, dementia with Lewy bodies
  • What percentage of people with Parkinson’s Disease go on to develop Lewy body dementia?
  • Why was it hard for Robin Williams to receive a diagnosis of Lewy body dementia (while he was alive)? And what’s being done to educate physicians?
  • Process of getting a diagnosis, the value in getting a diagnosis, the difficulty of getting a diagnosis when there are only psychiatric symptoms, family members’ reactions to the diagnosis, and the process of meeting with physicians
  • Treatments for Lewy body dementia
  • Symptoms of LBD including REM sleep behavior disorder, delusions, and fluctuating cognition
  • Brain donation
  • Optimism due to ongoing research

Both LBD caregivers mentioned the value of joining a local support group.  We encourage everyone to find a local support group near you – whether it be for Lewy body dementia or Parkinson’s disease.  One of the caregivers even participated in an Alzheimer’s disease group. You can find a list of LBD support groups here.

After the film and panel discussion, Family Caregiver Alliance (caregiver.org) shared an LBD resource list with attendees.  Those resources included:

  • Family Caregiver Alliance’s webpage on Dementia with Lewy bodies, which is a downloadable fact sheet
  • Brain Support Network’s webpage on Lewy body dementia, including a downloadable list of “Top Resources on LBD”
  • Lewy Body Dementia Association’s webpage for those living with Lewy:

Additionally, to learn about brain donation for LBD, Parkinson’s, and other disorders, contact Brain Support Network.

If you live in Northern California, contact Brain Support Network about joining our local LBD caregiver-only support group meetings.

The panel discussion was approximately 40 minutes long and can be viewed here:


One of Brain Support Network’s volunteers, Monica Monack, took notes on the June 30th panel discussion.  See her notes below.



Lewy Body Dementia Panel Discussion – Notes
Hosted by Family Caregiver Alliance and Brain Support Network
June 30, 2021

Summary by Monica Monack

Bruce Miller, MD, behavioral neurologist, UCSF Memory & Aging Center
Dianne Weitzel, leader of Brain Support Network’s LBD caregiver support group
Denise Dagan, volunteer with Brain Support Network’s LBD caregiver support group

Robin Riddle, CEO, Brain Support Network (brainsupportnetwork.org)

: It’s a delight to be here with all of you and to be sharing this wonderful film and our terrific panel.

So let’s start off with Dr. Miller. The terminology is incredibly confusing. We have Lewy body dementia, diffuse Lewy body disease, Parkinson’s Disease, dementia with Lewy bod. Can you help demystify this?

Dr. Miller: Let me give you a slightly complicated answer, because I think this is really an important question for families. So, this used to be Parkinson’s Disease and we used to think of Parkinson’s Disease as a movement disorder that had no effect on behavior, mood, anxiety or emotion. And, over time we learned that many people with Parkinson’s Disease don’t actually present to the family, to the doctor or to society with a change in movement. Rather they present with changes in things like visual hallucinations and delusions and profound disorders of sleep. In fact, I would argue that most people with Parkinson’s Disease have a propensity to these problems. Although some may present with a pure movement disorder, these are different parts of the elephant. The elephant is the bad protein that aggregates in the brain. It’s called alpha synuclein and it causes Parkinson’s Disease, Lewy body dementia, and dementia with Lewy bodies. They’re just different ways that the same molecule can wreak havoc in the brain. I think as we move toward therapies, what’s going to be incredibly important is to recognize all the different forms, with the one common molecule which is alpha synuclein. And I believe that in all of our lifetimes there will be a day when someone presents to the doctor with a sleep disorder or the psychiatric manifestations or the cognitive manifestations that we call Parkinson’s with dementia, the treatments will be focused on the primary cause which is this mis-folded protein.


Robin: One of the questions that some [of today’s] attendees asked is — what percentage of people with Parkinson’s disease go on to develop Lewy body dementia?

Dr. Miller: A really great study done in Norway suggested that at least a quarter of people with Parkinson’s Disease, if you look carefully, also show cognitive or behavioral issues early. I think the field has ignored this a lot. They focus on the Parkinson’s and forget that the severe anxiety, which is the same disease, is so disabling to loved ones and caregivers. I would say in a very high percentage of people with Parkinson’s it’s not just a movement disorder. It doesn’t start in the movement part of the brain. It starts in the part that is involved in regulating emotion, attention, sleep. These symptoms are often there with the Parkinsonism. So, very common.


Robin: It seems odd then that it was so hard for Robin Williams to ever receive a diagnosis of Lewy body dementia. He had access to all these resources, different kinds of resources, and yet he was still unable to get a diagnosis. Why was that?

Dr. Miller: Realizing that the mood disorder and the anxiety disorder are not just late life psychological problems, adjustment disorders. This is a disease. This is the beginning of Lewy body dementia. Until we realize this we will misdiagnose and, even more tragically, we will treat them inappropriately. Sadly, I think Robin got a lot of inappropriate treatments that didn’t focus on the biology of his problem. It had a real chemical basis, a real biological basis, but people didn’t really grapple with that.


Robin: I’d like to turn now to one of our caregivers.

Dianne, what was the process like for your husband getting diagnosed? Was it a challenge or was it fairly straightforward?

Dianne: It was definitely a challenge. We were living in Hawaii. I noticed first off that we were not on the same page anymore. Things that I would tell him, he would say he hadn’t heard before. When we had appointments, he didn’t register that. There were so many things. He forgot where we were going. He didn’t know where he was going sometimes. He didn’t recognize friends that we knew he should know. His doctor on the island doctor said there’s nothing wrong with him. When a farm and garden owner called me to tell me Gary had just been there and picked up some things, he said he was afraid that Gary wouldn’t make it home because he was driving by himself. I called the doctor immediately and the doctor said oh yes we will do a check on that. Bring him in first thing in the morning. We did that and later that day he said there’s nothing wrong, that his blood tests are totally normal. My friends were saying what’s wrong with Gary? He has no expression through his face. It’s like a mask. I’d try to take a photo and say smile Gary and he’d say I am smiling. Finally it was a urology friend who lives in San Francisco, that we saw on a trip back, who said what’s wrong with Gary? Please, I asked our friend, help me if you can and that’s when we saw doctors in UCSF. They told us he doesn’t have Parkinson’s, which is what our friend thought. They thought Gary had dementia with Lewy bodies.


Robin: Dianne, could you talk a little bit about your husband’s response to the diagnosis? Did he accept it? Was he in denial about it?

Dianne: He was very, very relieved when the neurologist told him he didn’t have Parkinson’s. And then he just turned off. He was fine with that diagnosis. He can still drive, he can do whatever he wants to. He’s not got Parkinson’s. But the UCSF doctor said you have either Lewy bodies or multiple system atrophy. I had him write those down. I went onto the web and researched both of those and subsequently we were given some medication to see if it will help. It was amazing how his expressions came back to his face he was able to show his emotions. A lot of things were working again after that medication. I was relieved but things got worse later on. There are always new medications and we knew what the diagnosis probably was. Even though, you can’t tell for sure until an autopsy.


Robin:  Denise, what did it mean for your family to receive a diagnosis and was your dad accepting of it?

Denise: My dad was diagnosed with Parkinson’s Disease. He was resistant to get the diagnosis because he was walking like Tim Conway, you know when he did the old man with the shuffling feet and not going anywhere. We encouraged him to find out if this was just old age or something else. But he had a trip planned for a christening of his first grandchild on the East Coast and he didn’t want any doctor telling him couldn’t fly. When he came back, we went to the Parkinson’s Institute because he confessed that his doctor suggested he see a neurologist. When we got the diagnosis and the prescription for Sinemet, the first pill turned back the clock by two years. It was amazing and he was very pleased because he wasn’t struggling any longer. He had been treated for Parkinson’s for about five or six years before he had his first hallucination. We learned a lot through the Parkinson’s phase. That the more you know, the more you can help yourself. So when the diagnosis changed, we kept pursuing information on Lewy body. At the time, it was probably 15 years ago, neurologists were still expanding their knowledge of Lewy body so there was nothing on the web. I think there was one book out.


Robin: What about the process for meeting with physicians? Did you always have another family member present besides your father? How did you get information?

Denise: Dad had an excellent neurologist in Corvallis, Oregon. She actually knew what Lewy body was when we suggested to look into this. It was after that, that my mom needed hip replacement and they moved in with us to have the surgery at Stanford. They lived with us for the better part of two years and I went to the neurology appointments with him at Palo Alto Medical Foundation. I started to learn a lot about what he needed, such as adding another dose of Sinemet or a time release at bedtime. But when they moved back to Oregon, I wasn’t involved anymore. After some time, we had to move them to California so they could get more support.


Robin: Dr. Miller, we’re receiving a lot of questions [from today’s attendees] about treatment. Both Dianne and Denise mentioned some dopaminergic therapy that’s very common for Parkinson’s Disease.   Could you speak to the treatments for Lewy body dementia and also the conundrum associated with treating psychiatric symptoms vs movement symptoms?

Dr. Miller: I think of three neurotransmitters. There’s the dopamine, and that’s involved with movement and some attention. Then there’s serotonin, which is where we see so much depression, as an early feature of this. Sometimes unalleviated anxiety in someone who was never anxious. I think of that aspect of the disease as a separate but treatable component. The third part is attention, and sometimes there’s a profound loss of acetylcholine. I think if we can boost acetylcholine we can diminish the hallucinations, trouble with attention, and tendency toward becoming delirious. We know that in people with Lewy body, because they’re so deficient in acetylcholine, if a little thing happens like a urinary tract infection or a post-operative, this cholinergic deficiency leads to a profound delirious state and alterations in sleep and wake. I often treat all three in different stages of the illness. And we can usually make a significant impact on caregiver’s and patient’s lives by thinking about these different treatable pieces. Your advocacy work is so important in telling families to not accept it’s untreatable. It’s uncurable now, but it’s very treatable.


Robin: Since it is uncurable, what is the value in getting a diagnosis?

Dr. Miller: The value is helping the people understand why and what. Most of us feel very poorly with mystery in our own lives. Having certainty about what happened is important. Because we have our own unique therapies for Lewy body, it’s important to diagnosis this properly. It’s always important for me to explain to families, I know this person is different. But it’s because there’s a chemical change. Better understanding of the architecture of this is really important. I’m an optimist and I believe we are on the verge of disease modifying therapies for Alzheimer’s, frontotemporal dementia and Parkinson’s. We have huge support through various foundations, like the National Institutes of Health, and we understand so much more. I think we’re really going to cure these diseases. So this is why I think diagnosis is so key.

Dianne: I think another reason for the diagnosis being important is that my husband had to have knee surgery halfway through his illness and the type of medications used in surgeries can have a big part on what the brain does. During surgery they did a saddle block on him rather than the normal anesthesia. But after surgery he went into a rehab facility where he was given the totally wrong kind of medication. That doctor didn’t know they couldn’t give that med to him. He was totally anxious and was having the most horrible hallucinations you could possibly imaging.

Dr. Miller: It’s such a great point. That’s preventable. Avoidable.


Robin: Denise, what kind of psychological or behavioral issues did your father exhibit during his course and what was challenging for you?

Denise: He had REM sleep disorder for at least a decade, probably longer, prior to his movement challenges. To the point where he threw himself out of the bed into the corner of the room behind the nightstand one evening when I was staying with my parents. We just assumed that because he was in WWII that these were sort of PTSD nightmares. Then you learn more and find out that moving and talking in your sleep nightly is a very common experience.  And that you’re much more likely to develop Parkinson’s and Lewy body dementia. I don’t know how Mom continued sleeping with him in a double sized bed for as long as she did. I’ve wondered if her lack of sleep contributed to her early on-set of Alzheimer’s.  As for hallucinations, the first time that happened to Dad was when he had taken an over the counter medication, something for muscle cramping or a cold. We had called the neurologist and she said to keep him comfortable and it’s fine if he takes this medication. Loosely translated it means you’re going to have a very interesting afternoon. He saw neighbors from Oregon driving past the house in California, he saw a woman nursing a baby in our patio. It was wild. Trying to keep him in the house was really challenging. They became more frequent as the disease progressed. At one point the neighbors found him out by the highway and brought him home. It was some effort to keep him safe. He wanted to dismantle the lawnmower. He wanted to work with saws in his shop. We were really afraid he would injure himself. But my mom’s feeling was that this is how he lived before he got sick. And if it’s what kills him, he would rather die doing what he loved to do. Even if he didn’t know what he was doing. It was scary.


Robin: Dr. Miller, Denise brings up REM sleep disorder. This also came out in the SPARK film in terms of Robin Williams suffering from some sleep issues. How common is REM sleep behavior disorder in Lewy body dementia?

Dr. Miller: It’s still under active study, but I would say somewhere between 60% and 80% of people with Parkinson’s had either a prodrome before the Parkinson’s REM behavior or it develops soon after the diagnosis. It’s really common. Thinking a few years down the line, if we have a great prevention for Parkinson’s and we knew it was beginning, that we would be able to intervene before any other problems occurred. The sleep disorder is really the beginning of Lewy body dementia. It may turn out to be a fortunate feature of the illness that we get sleep changes that tell us that Parkinson’s is coming.


Robin: Dr. Miller, back to your mention of movement symptoms vs psychiatric symptoms. One of today’s attendees mentioned that her mother had hallucinations as her primary symptom. I would imagine that having a psychiatric symptom like that would be very confusing for neurologists.

Dr. Miller: There are some features that Denise described really well that should have you think about Lewy body. The hallucinations tend to be formed as little children, little people, and very vivid scenes. Sometimes very disturbing to the person, but sometimes they actually sit back and enjoy them. So hearing that anyone later in life is getting hallucinations, we want our physicians, whether they are in primary care, the ER, or neuro and psych, to say this is something more than schizophrenia, which of course doesn’t happen later in life. I think the problem is education. I think that’s where this breaks down.


Robin: What is being done about educating physicians?

Dr. Miller: We’re just beginning. And part of the problem for some of this is that primary care docs don’t get reimbursed for spending a lot of time with families and thinking through symptoms like this. There is a program called ECHO that the state centers and Alzheimer’s centers all across California are beginning to work in. The program is opening up time for primary care physicians, and probably eventually families, to consult experts. I think the more and more we get palpable evidence that we have therapies for these disorders, families will demand that they get better diagnoses, care and treatment. I think this is coming and the work that you all do in advocating is going to change the way this is dealt with. The suffering that families go through with Lewy body is about as high as any illness that I have ever worked with.


Robin: Symptoms of LBD are hallucinations and delusions.  Dianne, could you speak about your experience with Gary and delusions?

Dianne: He had a sundowning every afternoon that would go on for hours and hours. He was a pilot for a commercial airline and the first symptoms that we were really aware of appeared about 5 years after he retired. So at age 65 he was already showing some terrible signs. One was that every afternoon he kept reaching out with his fingers trying and to make his eyes focus to what he saw as the cockpit of the airplane. He knew he wasn’t seeing it properly and he couldn’t tell what his altitude was. He kept trying to make his eyes focus on that dial. Then he couldn’t remember where he was going and he would be terrified that he was about to cause an airplane with 200 passengers to crash because couldn’t he see well, he couldn’t land an airplane in that condition. When I would see him doing this I would to tell him it’s ok, that the co-pilot has landed your airplane and we’re sitting at crew rest. And he would be so relieved and say thank you for telling us, I’m so glad we’re here, now let’s get this thing on the ground! And it would start all over again. So, I would let him know that we’re on the ground and then have to change the whole focus of whatever we were doing. Change the subject really quickly before he gets back into the problem. It was difficult. Another part was later on, as caregivers, we became his jailers. He was also an Air Force pilot for 10 years and military training taught him what to do if they were captured. So we were his captors.


Robin: One of the other very challenging symptoms of Lewy body dementia that we hear from our local support group is fluctuating cognition. Where the person can seem totally fine one minute and not the next. Or it may very on the basis of an hour or day.

Denise, your father exhibited this symptom. Could you give an example of it?

Denise: I have such a good example of this. I came out from my bedroom one morning and the caregivers had gotten him dressed and he was sitting on the sofa in the living room. His shirt was tucked into his pants and it was really bunchy. I knew by the afternoon it was going to be irritating and he was going to be less cooperative and upset. So I asked to him to stand up and I’ll smooth out your shirt so you’ll be more comfortable. I got it straightened out and got him back on the couch when my mom came out and said breakfast was ready. I said, ok Dad let’s stand up and we’ll go have breakfast. He had no idea what I was talking about. It was like I was speaking Martian. Any suggestions I would make to use the arm of the sofa to get up, or his walker, or something to lever himself out of the chair was confusing to him. After about 5 minutes of this, I was at my wit’s end. I thought about Dad, and he’s always about his food, and said to him, Dad go eat. And he stood up and went into the kitchen because he wasn’t thinking about what I was trying to say. It’s just that fast…English to Martian to English in just 10-15 minutes time.


Robin: Dr. Miller, what’s the neurochemical or protein based explanation for fluctuating cognition?

Dr. Miller: This is acetylcholine, I believe, and we have what we call a cholinergic deficit in people with Parkinson’s, sometimes even before they develop symptoms. So, when we measure this we see a profound deficit with acetylcholine. That’s the alerting chemical. It’s part of our reticular activating system that says wake up, attend, focus. And when someone has symptoms like this, I always treat them with a cholinesterase inhibitor because it boosts acetylcholine. The FDA approved a rivastigmine patch, but I think there are other ways to do this. I think this is something again that we can really manage and help people with. We don’t get rid of the deficit, but we can biochemically alleviate some of the loss of attentional capability.


Robin: Denise, back to you, I’m wondering what were some helpful resources and information as a caregiver?

Denise: My parents were older. Dad was 80 something when he was diagnosed with Parkinson’s. They had a computer that they used mostly for email. So I would look up information as Mom or Dad complained about his challenges. I’d try to find some information about preventing falls or wandering or whatever. When a friend recommended a caregiver support group, I sought out a Parkinson’s support group. I found sharing information with other people and learning from other people about how they cope with different challenges to be immensely helpful.


Robin: Dianne, how about you? What did you find most helpful to you? What resources?

Dianne: I also went to whatever I could to find to help make him more comfortable. I went to Parkinson’s classes and support groups. I went to Alzheimer’s support groups. I took a week-long class with Family Care Alliance. And then just quite by accident, as I was getting a [fall] monitor, the installer mentioned Robin Riddle’s [local Northern California atypical parkinsonism] support group. That’s where I said to myself that they are actually “Parkinson’s plus” which is exactly what I need. That has been so helpful to me. It’s why 10 years later I’m still helping the group because they helped me. That is also why [I signed Gary up for a] brain donation and a total body autopsy.


Robin: Both of you donated your family member’s brains.

Denise, can you talk about brain donation and why you donated your father’s brain and what the value was?

Denise:  Dad mentioned that he hoped there would be a cure for Parkinson’s before it got him. After I joined the [local Northern California Lewy body dementia] support group and learned about brain donation, I thought you can’t contribute to the cure if you’re not part of the research. So, we donated the brain without asking him. He’s part of the research now.


Robin: One last question to Dr. Miller. Could you say what is happening in the area of research and why you are so optimistic?

Dr. Miller:  I think that we have a community that is very organized around cures. This is unbelievably important. Setting lofty goals. Regarding research funding, we are in a very good space. Over the last 5 years the Aging Institute went from less than a billion to 3.5 billion dollars a year. This is extraordinary. The new administration said they are going to get us even more funding. Also systematic efforts. Not so much in the pharma companies yet, but in the academic labs, to figure out ways to prevent bad proteins from aggregating, from decreasing the inflammation when the proteins aggregate, from telling the cells to figure out better ways of clearing out the bad proteins. This is a common thread of all degenerative diseases. As we get older we are not as good at getting rid of the garbage in the cell. Brilliant investigators, like Dr. Ana Maria Cuervo at Albert Einstein University, are designing drugs that will help the cell get rid of this bad protein, alpha synuclein. I think our diagnostic abilities are approving. It could be a lot better with Parkinson’s. We don’t have those great blood biomarkers yet that we do with Alzheimer’s. But they’re coming. Early diagnosis, early intervention, and smarter drugs hold a very optimistic picture.

Robin: That’s such good news.


Robin:  Christina, we’re at the end of our time so I’ll turn things back over to you.

Christina [with Family Caregiver Alliance]Thank you so much to Robin, Denise, Dianne and Dr. Miller. Thank you to the Lewy Body Dementia Association for the use of the film. We hope that the film and this discussion has shed more light on this disease.




















“Strategies for managing feelings of loss and grief” (Elaine Book, MSW)

This wonderful list of strategies was compiled by Elaine Book, social worker with the Pacific Parkinson’s Research Centre in Vancouver, BC, Canada, in July 2020. This list was shared at a recent WellMed Charitable Foundation teleconference that featured Ms. Book, in conversation with Parkinson’s caregivers. (There is little about this list that is Parkinson’s-specific. Nor is it specific to caregiving.)

Ms. Book’s list includes this quotation:

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” (Vicki Harrison)

There are many good ideas here. The last one resonated with me:

Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

Happy reading,

Strategies for managing feelings of loss and grief
by Elaine Book, MSW, RSW
Pacific Parkinson’s Research Centre, Vancouver, BC, Canada
July 2020

Keep a journal

  • Writing out thoughts and feelings is an effective way to look at what is happening. Writing about your insights and reflecting on them can be empowering, can help you to find fresh opportunities and move in a new direction.  Sometimes writing about your losses can help you gain some emotional distance, make it more manageable and less frightening. Feeling the pain is healthier in the long run than denying the fears, anger, sadness, loneliness or resentment.
  • If you are new to journaling, start with writing down a daily highlight or gratitude. Or use prompts like “What makes me angry or sad or scared” or “What have I learned about myself” or “I found it funny and endearing when the PWP …” or “The unexpected gift I received”. [PWP = person with Parkinson’s]

Establish goals for yourself

  • Facing losses can leave you feeling out of control…try to counteract that feeling by setting goals for yourself like learning a new skill or taking a course or volunteering. Set up a plan that can work, one that is reasonable and rewarding.

Take action to stay healthy

  • Eat well, exercise, laugh every day, take breaks, sleep, maintain spiritual connections, remain intellectually stimulated, socially connected, use stress management and relaxation techniques like breathing.


  • Grounding practices like yoga, meditation or even walks in nature help to pace yourself.
  • Apps for mindfulness practice – www.headspace.com, 10%happier, Breathe

Surround yourself with those who feed you

  • Be with people whose presence energize you and stay away from those who drain you.  Create a “psychological family “…. the people you turn to in times of crisis and celebration. This circle of support can go beyond family.  The people who are there for you in good times and bad are the ones who will be able to understand the losses of the caregiving experience. They can provide a healing hug. Also recognize the formal resources and support systems that are available to help you if your psychological family needs expanding.

Work together

With your loved one, address and come to terms with the losses and changes in function. A condition can bring you closer for having a shared experience.

Create something new

  • New plans, new connections based on how your life is now. Look for ways to connect with the PWP as he/she is today. Seek out joy in your relationship with the PWP.  [PWP = person with Parkinson’s]


  • Think about past challenges in your life and how you navigated through them. Then use those experiences to remind yourself of your courage and strength and possibly use some of the same strategies again. What was helpful and what was not. Trust in yourself that you have the ability to meet the present challenge.


  • Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

“Managing Blood Pressure in Parkinson’s” – Webinar notes

In early June, the Parkinson’s Foundation (parkinson.org) offered a webinar on managing blood pressure in Parkinson’s disease (PD), featuring neurologist Albert Hung. He discussed how PD impacts blood pressure (BP) regulation, how to diagnose BP issues, and approaches to treating BP in those with PD. Many in the atypical parkinsonism community — especially those with multiple system atrophy (MSA) and Lewy body dementia (LBD) — experience these BP regulation issues, so we are sharing information about the webinar here.

In particular, one issue in PD, MSA, and LBD is orthostatic hypotension (OH), which is a drop in blood pressure when someone stands upright. To be defined as OH, the drop in BP associated with standing must be:

  • Systolic BP drops at least 20 mmHg or more
  • Diastolic BP drops at least 10 mmHg or more

Systolic is the upper number, and diastolic is the lower number. So a person whose BP is generally 130/70 would be experiencing OH if the person has a drop in BP to 110/60 with standing.

As the speaker says:

OH is largely a consequence of gravity: when you are upright, your blood tends to go to your legs, and your circulatory system has to work harder to keep it moving against gravity. This is why some people who work on their feet all day may have swelling in their feet or ankles by the end of the day.

Some people experience symptoms (are symptomatic) when their BP drops, while others are asymptomatic and can’t even tell. Common symptoms of OH include lightheadedness or dizziness; weakness; fainting; difficulty thinking (especially in older individuals). When OH causes symptoms, it is especially worrisome.

This webinar was recorded and can be viewed here: 


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

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

Managing blood pressure – Webinar notes
Presented by the Parkinson’s Foundation, Northeast Chapter
June 4, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

When it comes to managing Parkinson’s disease (PD), there are a lot of symptoms a movement disorders specialist typically asks about: tremor, walking, balance, and other aspects of physical functioning. One thing that sometimes falls through the cracks is blood pressure (BP), but this can have a significant impact on one’s quality of life and overall health. Compounding the challenge, once someone with PD starts to experience drops or fluctuations in BP, it’s not always clear who should address these issues: the neurologist, the primary care doctor, or the cardiologist?

The speaker, Dr. Albert Hung, is a neurologist at Harvard. He pointed out that it is often when going about one’s day-to-day activities that BP problems are most noticeable, not necessarily when one goes into the clinic for an appointment. Thus, it is a topic that is particularly relevant today when many are sheltering at home due to the Covid-19 pandemic.

He started with a discussion of the factors that regulate BP:

  1. Heart: Cardiac output, the ability of your heart to pump blood throughout your body.
  2. Blood vessels: Our blood vessels are not just pipes; they also contain muscle tissue and nerves (baroreflexes) that allow them to participate in BP regulation by dilating or contracting in response to communication from the brain.
  3. Blood volume: The amount of fluid we have circulating in our body is critical to maintaining BP. If you don’t have enough blood, such as from blood loss or dehydration, no matter how strong your heart is or how much your blood vessels contract to try to compensate, your BP will eventually drop.

When your BP is checked, whether at home or at the doctor’s office, all these factors work together to determine whether the BP reading is a little high, normal, or a little low.

The Autonomic Nervous System

Sometimes called the “involuntary” nervous system, this is the part of the nervous system that manages certain bodily functions automatically, without your being aware. There are 2 main “flavors” of the autonomic nervous system:

  1. The sympathetic nervous system – Involved in the “fight or flight” response
    1. Increases heart rate and strength of heart contractions
    2. Widens airways
    3. Induces sweating
    4. Causes your pupils to dilate
  2. The parasympathetic nervous system – the “rest and digest” functions
    1. Controls bowels and bladder
    2. Slows heart rate and lowers BP
    3. Regulates erectile function

Orthostatic hypotension

Ordinarily, our body responds to whatever we are doing – running, walking, lying down, or sitting – and is able to maintain a nice, steady blood pressure within a normal range. If your BP starts to creep up and is high most of the time, then your doctor might diagnose you with hypertension – high BP – and possibly put you on medication to lower it.

However, in Parkinson’s disease, the most common BP issue is actually low BP, or hypotension. This particularly occurs when the individual is standing upright, which is called orthostatic hypotension. Orthostatic hypotension (OH) is defined as a fall in BP associated with standing:

  • Systolic BP drops at least 20 mmHg or more
  • Diastolic BP drops at least 10 mmHg or more

So a person whose BP is generally 130/70 might experience a drop when they stand up down to 110/60, or even lower. (130 is the systolic BP and 70 is the diastolic BP.)

OH is largely a consequence of gravity: when you are upright, your blood tends to go to your legs, and your circulatory system has to work harder to keep it moving against gravity. This is why some people who work on their feet all day may have swelling in their feet or ankles by the end of the day.

Some people experience symptoms (are symptomatic) when their BP drops, while others are asymptomatic and can’t even tell. Common symptoms of OH include:

  • Lightheadedness or dizziness
  • Weakness
  • Fainting
  • Difficulty thinking (especially in older individuals)

When OH causes symptoms, it is especially worrisome.

OH can be neurogenic – caused by changes in the brain, such as in PD – or non-neurogenic, caused by other issues. Causes of each include:

  • Neurogenic OH:
    • Parkinson’s disease
    • Other parkinsonism, such as multiple system atrophy, dementia with Lewy bodies, or pure autonomic failure
    • Small fiber/autonomic neuropathies
  • Non-neurogenic OH:
    • Medications
    • Dehydration
    • Fever
    • Cardiac disease
    • Chronic illness with deconditioning

OH is quite common in PD, possibly affecting up to 30% of individuals with PD in some studies. OH becomes more likely as the disease advances, but in some people, it can occur early on as well. PD often causes OH, however, the dopaminergic medications used to treat PD can also lower BP, contributing to or triggering episodes of OH. This can lead to challenging dilemmas in treatment decisions.

In many ways, the motor symptoms that allow for diagnosis of PD are just the tip of the iceberg; the changes in the brain have already spread to many areas that impact other aspects beyond motor function, such as autonomic function, which may not be as apparent or visible. Additionally, many of the symptoms down below the “tip” of the iceberg – such as autonomic dysfunction, mood changes, or sleep problems – may not respond to medication as readily as motor symptoms like tremor or walking.

Am I having neurogenic OH?

Below are some screening questions you can ask yourself or your loved one while at home, to determine whether you may be having neurogenic OH.

  1. Have you fainted/blacked out recently?
  2. Do you feel dizzy or lightheaded upon standing?
  3. Do you have vision disturbances when standing?
  4. Do you have difficulty breathing while standing?
  5. Do you have leg buckling or leg weakness when standing?
  6. Do you ever experience neck pain or aching (“coat hanger pain”) when standing?
  7. Do the above symptoms improve or disappear when you sit or lay down?
  8. Are the above symptoms worse in the morning or after meals?
  9. Have you experienced a fall recently?
  10. Are there any other symptoms you commonly experience when you stand up or within 3-5 minutes of standing, and that get better when you sit or lay down?

What can aggravate neurogenic OH?

  • Alcohol
  • Heat exposure, whether due to weather or a hot tub / hot shower
  • Carbohydrate-heavy meals
  • Prolonged sitting or lying down
  • Dehydration
  • Physical exertion
  • Straining (during urination or bowel movement)

How is neurogenic OH diagnosed?

You may have a suspicion that you are experiencing nOH at home, but your doctor will still need to follow the diagnostic process to determine if that is actually what is happening to you. I In most clinics, your BP and heart rate (HR) vital signs will be checked at the beginning of the appointment. However, most clinics will only check them once, while you are sitting down. Someone who has OH may have normal vital signs when seated.

If you suspect that you may be experiencing OH, you may need to ask the medical assistant or the doctor to check what is called orthostatic vitals – to check your BP again after you have been standing for a few minutes and see if it drops significantly from the first measurement when you were seated.

You can also check these measurements on your own, at home, which can be even more informative. BP fluctuates under normal circumstances throughout the day. Electronic BP cuffs can be purchased from most drugs stores or ordered from the manufacturer, though they are not cheap, and often cost at least $50.

What your doctor is looking for is a drop in the BP when you have been standing for a few minutes. Usually, the heart rate remains the same. If the heart rate goes up as the heart tries to compensate for the drop in BP, this suggests that you may be dehydrated – you should try to drink more fluids!

Once it is clear that OH is present, you may need to reduce or stop medications that cause OH, if appropriate. Many people are on anti-hypertensive medications to lower the BP if they have had issues with high BP in the past; this medication may need to be lowered or stopped if you are experiencing OH now.

Your doctor may also decide to have you undergo further testing, such as an echocardiogram, an electrocardiogram (EKG), and blood tests, to make sure your heart is functioning normally. If all of that testing doesn’t show a clear cause of your OH, your doctor may also consider specialty testing, such as autonomic function testing that uses a tilt table to assess your BP stability, or 24-hour BP monitoring.

How to manage neurogenic OH?

  1. Modify or remove medications that can cause neurogenic OH
  2. Non-pharmacologic measures
  3. Pharmacologic measures
  4. Combination pharmacologic measures

Modify or remove medications that cause OH: 

  • Anti-hypertensive agents like beta blockers, ACE inhibitors, calcium channel blockers, etc.
  • Diuretics to get rid of extra fluid, such as Lasix.
  • Dopaminergic agents, such as levodopa or dopamine agonists (Mirapex, Neupro, or Requip).
  • Alpha-1 adrenergic blockers, used to treat benign prostatic hyperplasia.
  • Medications for erectile dysfunction, such as Viagra.
  • Antidepressants, such as amitriptyline, nortriptyline, and imipramine.

You may have noticed (C), dopaminergic agents! Frustratingly, some of the medications used to treat Parkinson’s disease (PD) can also contribute to drops in BP. Often, it is necessary to reduce how much of these medications you are taking, if you are experiencing symptoms of neurogenic OH. Sometimes, it can be a balancing act.

There are some measures to combat neurogenic OH that do not involve medication changes. These are sometimes called “conservative measures” or non-pharmacologic measures.

  • Hydration, hydration, hydration!
    • Drink a minimum of 64 oz (2 liters) of water daily.  
    • If you are having an OH episode, drink 2 cups of water within 5 minutes as this may help to boost your BP for an hour or two.
  • Increase salt intake! Many people avoid salt as they get older, but your body actually needs salt to hold onto enough water to maintain a healthy BP.
    • Add 1-2 teaspoons of salt to your diet per day.
    • Or take salt tablets (0.5 to 1 gram NaCl) with meals.
    • Be careful if you are at risk for fluid retention or heart failure! In that case, check with your cardiologist first.
  • Physical maneuvers to counter OH, particularly if you are in a situation, such as waiting in line at the grocery store, where you can’t sit down right away. Sitting down immediately is the best option!
    • Stand up on your toes or cross your legs while standing; this helps the blood flow return from your legs to the rest of your body. 
    • Lean forward and rest your hands on your knees.
    • Put one leg up, such as on a chair.
    • Squat on both legs.
  • Compression garments: the idea is to help squeeze the blood to return to your heart, so it does not pool in your legs. These garments can be challenging to get on and may be uncomfortable, but some find them to be helpful in avoiding more medication.
    • Compression stockings – waist-high are most effective, followed by thigh-high. Knee-high are generally not effective.
    • Abdominal binder – similar to a girdle.

Pharmacologic (drug) measures

  1. Fludrocortisone (Florinef)
    1. Works on your kidneys to promote salt and water retention.
    2. Side effects: supine hypertension (spikes in BP when laying down), low potassium, and swelling.
  2. Midodrine
    1. Causes blood vessel constriction. Can sometimes be dosed in conjunction with levodopa to mitigate drops in BP.
    2. Typically 1-3 doses a day. Kicks in after about 30-60 minutes and lasts 2-4 hours.
    3. Avoid taking too close to bedtime or before laying down.
  3. Pyridostigmine (Mestinon)
    1. Enhances neurotransmission at pressure-sensing synapses
    2. May be best for less severe OH and is less likely to cause supine hypertension (spikes in BP when you lay down)
    3. Side effects: abdominal cramps, diarrhea, drooling, excessive sweating
  4. Droxidopa (Northera)
    1. Causes blood vessels to constrict
    2. Avoid taking too close to bedtime or before lying down

Combination pharmacologic measures

Each of the drugs listed above works in a different manner. Sometimes your doctor may have you take more than one of them, which may address the problem from different angles, yielding better results for some people.

Post-prandial hypotension

An important concept to be aware of is post-prandial hypotension – a drop in BP after eating a large meal. When you eat a lot at once, your body responds by diverting blood from the rest of your body to your digestive tract, to help process the food. But this can decrease BP to the rest of your body during that time, causing your overall BP to drop. This can occur particularly with alcohol or with meals rich in carbohydrates. Some people may feel faint or weak even just sitting at the dinner table. For an individual who is also prone to orthostatic hypotension, this can lead to very dangerous drops in BP when getting up from the table after a large meal, potentially triggering fainting and falls.

To manage this problem, try the following:

  • Eat smaller, more frequent meals rather than one large meal.
  • Avoid alcohol with meals.
  • Drink several cups of water quickly, either before or during the meal.
  • Avoid taking your PD medications too close to meals, as this can contribute to low BP.

Supine hypertension

The speaker talked mostly about the dangers of low BP in those with PD, but he also wanted to address supine hypertension – a significant rise in BP that can occur when laying down. The same dysfunction in the autonomic system that can cause neurogenic OH can also cause supine hypertension. Complicating matters, the medications used to treat neurogenic OH can worsen supine hypertension. Symptoms include headache and flushing.

Strategies to manage supine hypertension include:

  • After taking medication for your OH, avoid lying down for at least 3-4 hours.
  • Sleep with the head of the bed elevated. This also reduces nighttime urination.  
  • A short-acting anti-hypertensive medication may be necessary during the day or overnight to lower the BP and prevent hypertension while lying down.

Main takeaways:

  1. Fluctuations in BP are common in Parkinson’s disease.
  2. These are due to the underling disease but can also be exacerbated by PD medications.
  3. It is important to recognize symptoms associated with orthostatic hypotension.
  4. A combination of pharmacologic and non-pharmacologic strategies may be helpful.
  5. Supine hypertension can also occur in PD, affecting lifestyle and complicating management.

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Question & Answer Session

Q: For someone who has been experiencing PD-related OH and supine hypertension for years, are they at higher risk for stroke or heart attack?

A: When we think about BP issues in someone with PD, it’s important to think about them not just in the context of their neurologic disease. If they have a history of cardiac disease, that’s important to take into account when evaluating their risks from OH and supine hypertension.  It may affect how your doctor tries to manage their BP issues. It is important to focus on the symptoms that are most bothersome and present the largest impact to quality of life.

Q: My husband has PD and struggles with low BP in the mornings, often fainting. What should we do?

A: Have you tried the conservative measures mentioned above? If you have, and he is still fainting regularly, then it’s time to speak with his doctor and be more aggressive in treating this, likely by adding some medication.

Q: If Sinemet (levodopa) seems to be causing low BP, what else can be done?

A: We all love Sinemet in the right context for its ability to improve motor function in PD! But sometimes it’s a balancing act. The first thing he would do is see if the Sinemet can be reduced without substantially impacting your ability to move. However, for those who are working with a movement disorders specialist, there is probably a reason that you ended up at your current level of Sinemet: the lower doses likely weren’t controlling your motor symptoms adequately.

If that’s the case, then using the other strategies – conservative measures and maybe adding a medication or two to support BP – is likely the best approach.

Q: My diastolic BP (the bottom number) tends to be low, around 60, whether I am standing or sitting. How do I manage this?

A: Everybody’s diastolic BP is different; this may be quite normal for you. When we are trying to treat the symptoms of neurogenic OH, we focus on treating the symptoms – how you feel – not the BP numbers. Not everyone experiences symptoms even if their BP numbers fluctuate; for those who are asymptomatic, we don’t need to treat it.

His advice to patients is, if you’re having these symptoms, have a BP cuff at home to check occasionally when you are feeling off. But don’t be overly compulsive about checking your BP over and over again throughout the day; this will only lead to anxiety, which can make your BP higher! Follow whatever guidelines your doctor has given you for when to measure your BP, and otherwise, focus on going about your day.

“How to Build Resilience While Living with Parkinson’s” or other disorders – webinar notes

With the pandemic, I’ve been reviewing materials received in the past on the topic of resilience. This blog post is about a webinar in January 2019 on building resilience while living with Parkinson’s Disease (PD). The webinar featured the wonderful palliative care chaplain at UCSF, Judy Long. Though the webinar’s title includes “Parkinson’s,” there is nothing in Ms. Long’s presentation that is specific to PD. Several of the questions are about coping with PD but these questions (and their answers) relate to coping with any neurological condition.

In this webinar, Ms. Long notes that it is only when we notice feeling upset or threatened that we can make a choice about how to respond.  If we don’t notice how we feel we have little hope of making a choice of how to respond and will only react instinctively.  

Through a series of explanations and exercises, Ms. Long presents four obstacles to resilience and tools to overcome each of them through intention and practice.

Obstacles to resilience, or what gets in our way of bouncing back the way we want to:

  1. Not noticing how we feel.
  2. Believing the current circumstances don’t make sense, shouldn’t be happening or are meaningless
  3. Believing I’m all alone and nobody else understands, or feeling isolated
  4. Believing you are helpless and there is no skillful action you can take to change the situation

What can we do to counter these obstacles? There is an opposite to each of these obstacles.

  1. The opposite of meaninglessness is what matters to you most or purposeful positive intentions.
  2. The opposite of isolation is authentic connection with others.
  3. The opposite of helplessness is realizing the choices you have.

Ms. Long offers exercises to overcome these obstacles.

The speaker makes some observations about caregivers:

Even though your inclination may be to handle difficult situations alone, if you do that all the time it is stressful both emotionally and physically and, therefore, unhealthy.  Caregivers tend to fall into this category.

Even when [the caregiving] is difficult and we feel exhausted, it makes a difference to our energy level to remember why we are caring and that it is based on love.  Burnout includes meaninglessness, isolation and helplessness…

Brain Support Network volunteer Denise Dagan listened to the webinar back in January 2019, and shared her notes. (Unfortunately the webinar recording is no longer available online.)



How to Build Resilience While Living with Parkinson’s
Davis Phinney Foundation
January 15, 2019
Notes by Denise Dagan
Speaker: Judy Long, outpatient palliative care chaplain at UCSF

We all have resilience but we can always strengthen our resilience so we can sustain demands of caregiving or other stresses.

When we feel something is difficult there can be a sense that something is threatening us, like pain, exhaustion or other discomfort.  We may feel as though we need to fight the threat.  This is due to the fight or flight response, which is instinctive. The alternative is to freeze and not do anything.  There may be better responses that will help us bounce back to a more normal state, as opposed to feeling threatened.

A prime skill that will precede everything else, if you can notice that you feel threatened or upset, that noticing is the most important thing you can do because it allows you to make a choice about how to respond.  If you don’t notice how you feel you have little hope of making a choice of how to respond and will only react instinctively.

Obstacles to resilience, or what gets in our way of bouncing back the way we want to:
1. Not noticing how we feel.
2. Believing the current circumstances don’t make sense, shouldn’t be happening or are meaningless
3. Believing I’m all alone and nobody else understands, or feeling isolated
4. Believing you are helpless and there is no skillful action you can take to change the situation

What can we do to counter these obstacles? There is an opposite to each of these obstacles.
1. The opposite of meaninglessness is what matters to you most or purposeful positive intentions.
2. The opposite of isolation is authentic connection with others.
3. The opposite of helplessness is realizing the choices you have.  

Overcoming meaninglessness is positive intention — positive intentions for the good of others can be values you hold dear, like kindness, patience or love (giving and receiving). The most important thing to you may be your family or courage. There are many options, but it should make you feel positive and that you care about the wellbeing of others.

Exercise: Choose an intention each day.  Try this exercise more than one day to see how it works for you. In the morning, before you rise from bed, choose an intention and try to remember that intention throughout the day.  When you’re speaking with someone and begin to feel stressed (annoyed, etc.) use that as a cue that employ your intention.  See if that intention changes the way you respond to that person and in other situations throughout the day. At bedtime review if/when you remembered your intention throughout the day and how it improved the way your interacted with others.  Decide if you will keep with the same intention the next day or try another (kindness, patience, courage, etc.)

Exercise: Think of an interaction that will happen in the next day that will be challenging and pick a specific intention for that interaction that is positive.  If you hope not to get angry or annoyed, turn it around and intend for the other person to feel loved or that you are being patient, etc.

Overcoming isolation is authentic connection with others — connection is protection. This is true from the time of cavemen.  If we hadn’t connected as early humans, we wouldn’t have survived to modern times.

Many of us want to be alone when we are upset.  Sometimes, we need some alone time to process what is going on, how we feel about it and how to respond.
Even though your inclination may be to handle difficult situations alone, if you do that all the time it is stressful both emotionally and physically and, therefore, unhealthy.  Caregivers tend to fall into this category.

Exercise: Notice if you are going it alone too much of the time and make the choice to connect with someone else. Think about who you can bear talk to even though you are upset and make the effort to reach out to them for input and support.

Overcoming helplessness is to make a skillful choice
. Ms. Long tells the story of a concentration camp survivor who emerged whole and developed a psychological theory of meaning.  Everything can be taken from a person excepting the freedom to choose one’s own attitude in any given set if circumstances and the capacity to act even.

Skillful choices you can make are positive intentions, connecting with others or this grounding exercise.

The psychology of positive thoughts is that even when we have a positive series of negative thoughts, we can overcome them with a series of positive thoughts. The benefits of positive thoughts is both emotional and physical.

Exercise: Toward the end of your day think back over the things you were grateful for.  Try to come up with three things.  Name it and say in your mind specifically what you are grateful for.  Jot down on a piece of paper each thing you are grateful for and why.  Go to sleep.  Repeat this exercise for at least two weeks.  At the end of that time reflect back and see if you notice positive things throughout your day, not just at night.  Where we place our intention is what we notice and how we act.

Example: I am thankful for my hot shower this morning.  I am grateful for the massaging way the water hits my back.

Example: I like my hot oatmeal this morning.  It was tan, lumpy, hot, sweet and lumpy.

Example: I am grateful for my husband/child.  Be specific:  My daughter gave me a big hug when I was feeling sad. I was grateful my husband brought the trash can behind the house.

Grounding Exercise: If you know thinking about your breath makes you nervous, you may want to skip this exercise. Extensively studies and found to bring humans into a calmer state of mind when our nervous system is stressed.
Direct your imagination to your heart area.  Place your hand over your heart to enhance the experience. On the in breath, notice that your chest expands.  On the out breath, notice that your chest deflates.   Pretend you can breathe in directly into your heart, as opposed to your lungs.
If your mind wanders, just notice that has happened and bring focus back to your heart and resume breathing into and out of your heart.


Q. I have early PD and my husband/care partner has early Alzheimers.  We don’t have close family and I have always cared for him.  We are in our mid-70s.  I am so tired.

A. People in early stages of memory loss can remain in the stage of mild cognitive impairment for quite some time.  The best way to encourage that is to have him continue to do as much for himself as possible, keep socially engaged, maintain your physical closeness and foster an intent of patience and care for each other.  When you do something that is beneficial for someone you care about you benefit, yourself, emotionally.  Part of the caregiving instinct comes from evolution of tribal and parental caregiving.  Even when it is difficult and we feel exhausted, it makes a difference to our energy level to remember why we are caring and that it is based on love.  Burnout includes meaninglessness, isolation and helplessness so these exercises counter burnout.

Q. How do you deal with the reality that PD is your future and will only get harder?

A. I am, by nature, someone who likes to look issues directly in its face.  A little information gathering helps me prepare and realize how it will get worse so you can prepare and plan ahead.  That may include some home remodel or relocation, for example.  Taking action to put steps in place can reduce stress. Alternatively, using the tips from this webinar will help you get through each day and life’s others heartbreaks that have nothing to do with PD.

Q. What about the role of a PD care partner who is more concerned with the illness than the person with PD?

A. My inclination is to meet with one, the other, or both partners one-on-one.  Not being in the room with these people to have a conversation about it, I will share how emotions work.  We need to understand how to meet difficult emotions.  It is hard to be around someone who is experiencing difficult emotions.  Try transparency: at a time when you don’t feel upset about this situation, try telling your partner that you would like to share with them at some point how you feel about having PD and have a conversation about it.

Some people find gathering information is useful.  What you do with that information can be practical and helpful and make them feel in control.  It can also be a way to avoid dealing with the emotions the other person is dealing with.

Q. As a care partner to my friend, I notice he/she (has had PD for 11 years) becomes childlike and needy when I’m around, but not so much when his aides are with him and I am not.  This co-dependence is exhausting.  How do I help him learn to be self sufficient?

A. Think about how you can tell the truth in a way that is kind.  You might say to your friend that you’d like to see if he/she might be able to do ___ on his/her own.

Q. What if the person with PD wants to talk about PD all the time and the care partner does not?

A. Try to redirect toward areas of resilience the person with PD can build for themselves.  Suggest some of the exercises in this webinar.  Do them together. Empathize with their feelings underlying their desire to talk about PD, but redirect to resilient skills or social activities to help them feel more emotionally strong and more healthy.  The gratitude practice can be the most beneficial for everyone, including those with PD.

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.