Agenda – October 28th PSP/CBD Research Update and Family Conference

Register now for the conference as space is limited.  Questions?  Contact us.

Here’s the tentative agenda (subject to small changes):

PSP/CBD Research Update and Practical Conference
Saturday, October 28, 2017
Crowne Plaza Foster City (California)

Hosted by:
Brain Support Network

Organized in partnership with:
University of California San Francisco Memory & Aging Center

Generously sponsored in part by Biogen.

Check-in; continental breakfast; visit exhibitor tables

Welcome by Brain Support Network


9:10am  (15min)
Adam Boxer, MD, UCSF MAC – overview of PSP clinical research

9:25am  (15min)
Richard Tsai, MD, UCSF MAC – tau PET imaging for CBS

9:45am  (5min)
Dianna Wheaton, PhD, FTD Registry – update on the registry (which includes PSP and CBD)

9:50am  (15min)
Larry Golbe, MD, Rutgers Robert Wood Johnson – investigating the geographical cluster of PSP in France

10:05am  (10min)
Daniel Lee, PhD, University of South Florida, Tampa – pre-clinical research update on tauopathies

10:15am  (25min)
PANEL of previous five speakers, moderated by Alex Klein, PhD, CurePSP


10:40am  (10min)
Haung (Ho) Yu, PhD, Columbia – research update on clearance of misfolded tau protein

10:50am  (10min)
Stewart Clark, PhD, University of Buffalo – research update on creating a pre-clinical model for PSP

11am  (10min)
Adam Gerstenecker, PhD, University of Alabama at Birmingham – research update on functional ability in PSP

11:10am  (10min)
Gerard Schellenberg, PhD, Penn Neurodegeneration Genomics Center – what we know and don’t know about PSP and CBD genetics

11:20am  (25min)
PANEL of previous four speakers, moderated by Alex Klein, PhD, CurePSP

11:45am  (60min)
Lunch and visit exhibitor tables


12:45pm  (15min)
Donna Schempp, LCSW – resilience and coping

1pm  (10min)
Leslie Wolf, person with CBD – Holding Steady on Shaky Ground

1:10pm (10min)
Phil Myers, (former) caregiver to wife with PSP, Brain Support Network – Eight Things We Learned From This Journey

1:20pm  (10min)
Jeanette Brown, MD (retired), person with PSP – Being (a) Patient with PSP

1:30pm  (30min)
PANEL of previous four speakers, moderated by Robin Ketelle, RN, UCSF MAC

2:00pm  (20min)


2:20pm  (25min)
Sharon Sha, MD, Stanford – Corticobasal Syndrome, Corticobasal Degeneration, and Progressive Supranuclear Palsy: What are the Tauopathies?

2:45pm  (25min)
Megan DePuy, SLP, private practice, San Mateo – what can we do about speech and swallowing problems?

3:10pm (25min)
Erica Pitsch, DPT, UCSF – what can we do about movement problems?

3:35pm  (15min)
Heather Moss, MD, neuro-ophthalmology, Stanford – what can we do about eye movement problems?

3:50pm  (30min)
PANEL of previous four speakers, moderated by Robin Riddle

Closing remarks by Brain Support Network

Note:  We are using “CBD” to refer to both CBS and CBD.


Recording, Resources + Notes from Orthostatic Hypotension in PD, MSA, and LBD Webinar

Brain Support Network and Stanford University co-hosted a webinar last Monday, September 18th about orthostatic hypotension (OH) in Parkinson’s Disease (PD), Multiple System Atrophy (MSA), and Lewy Body Dementia (LBD).



We’ve posted the webinar recording here —



If you listen to the webinar recording, please take LESS THAN FIVE MINUTES to answer six questions on our survey.  See:



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

Orthostatic hypotension –

Parkinson’s –

Make an appointment with Dr. Santini at the Stanford Movement Disorders Center –  650-723-6469

Multiple System Atrophy

Lewy Body Dementia



Our terrific volunteer, Denise Dagan, took notes from the webinar.

Orthostatic Hypotension (OH) in Parkinson’s, Multiple System Atrophy, and Lewy Body Dementia

Speaker:  Veronica Santini, MD, movement disorders specialist, Stanford University
Host: Candy Welch, former MSA caregiver, Brain Support Network
September 18, 2017



Topics for this webinar are:
* Describe symptoms associated with orthostatic hypotension (OH) in
– Parkinson’s Disease (PD)
– Multiple System Atrophy (MSA)
– Lewy Body Dementia (LBD)
* List the conservative and medication interventions used for treatment

Normal Blood Pressure Response to Gravitational Change
Gravitational Change = changing from lying or sitting to standing, even climbing stairs.  Gravity pulls blood into the legs and belly (up to 1 liter, or more).  That means less blood goes to the heart, resulting in up to 20% less blood leaving the heart and consequent blood pressure decrease.  Normally sensors in the neck see less blood pressure and sends signals to close blood vessels, increasing blood pressure.  Important organs get nutrients and oxygen.

In OH the sensors are not working properly (baroreceptor reflex is dysfunctional), so blood vessels don’t close.  They stay open and blood pressure drops, causing symptoms.

Common symptoms include:  lightheadedness, dizziness, almost passing out, weakness, fatigue, visual blurring, headaches.

Less common are:  buckling legs, walking difficulties, confusion, slowed thinking, shortness of breath, imbalance, jerking movements, neck pain/“coat hanger headache”, chest pain

Rare symptoms include:  stroke-like symptoms, weakness or numbness, abnormal cramping/dystonia.

Evaluation of OH includes:
– History of autonomic symptoms
– “Orthostatic” blood pressure (BP) = measure BP in both laying and standing postures.  OH is defined as a drop of the systolic >20 or diastolic >10
– Neurological examination
– Autonomic testing can be helpful in distinguishing PD/DLB from MSA

Approach to Treatment of OH:
Conservative therapy first, then adding Medications and, if necessary, Combination therapies (both conservative and medications, even a combination of medications)

Goals of Treatment:
1. Prevent loss of consciousness (this leads to falls and potential injury)
2. Prevent close calls (almost losing consciousness and)
3. Identify and prevent symptoms of OH (leg weakness, falls, somnolence, confusion)
4. Improve fatigue, exercise tollerance and cognition

Actions to Avoid:
– Standing motionless
– Standing too quickly
– Working with arms above shoulders
– Hot environments (anything that leads to sweating)
– High altitude
– Hot baths
– Fever
– Dehydration !!!
– Vigorous exercise
– Fast or heavy breathing
– Large meals
– Alcohol
– Straining with urination or defecation
– Coughing spells

Conservative Management:
– Water ingestion (60oz/day!)
– Salt tabs, dietary salt (chips, pretzels, nuts, deli meats, soups, tomato juice)
– Head of bed elevation 10-20 degrees/4” or 10cm (reduces postural change extremes, and urination)
– Physical maneuvers that raise orthostatic blood pressure (standing calf exertion, raise one leg on a step, knee bends, single knee kneel)
– Cooling vests, leg sleeves, binders around the abdomen after eating to prevent blood rushing to gut for digestion

Fludrocortisone (Florinef)
Mineralocorticoid, a-1 agonist = woirks by expanding blood vessel volumes
Dose 0.1-0.5mg/daily
Should be used carefully due to rise of volume overload, electrolyte abnormalities
Additional side effects: headache, swelling, weight gain, high blood pressure lying flat.

Peripheral z1 agonist = Works by squeezing blood vessels
Dose 5-10mg 3x daily
Common side effects: pupil dilation, goose flesh, tingling, itching
Can also cause high blood pressures when lying flat.

Droxidopa (Northera) (Newest FDA-approved Rx)
Norepinephrine (NE) pro-drug but the exact mechanism of action is unknown.
Studies have shown low standing NE
Dose 100-600mg 3x daily
Common side effects: headaches, dizziness, nausea, blurry vision, high blood pressure
Can also cause high blood pressures when lying flat.

Doctors advise against lying down when using all of these so you don’t raise blood pressure too high. Never take them before bedtime so blood pressure doesn’t go to high while sleeping.

Non FDA-approved Pharmacology:
Pyridostigmine (Mestinon)
Improves standing BP in patients w/OH
Does not increase BP when lying down
Effective alone or w/Midrodrine
Side effects: diarrhea, salivation, nausea, vomiting, muscle cramps, twitching\

a-2 adrenorectptor antagonist = increases norepinephrine and BP
Side effects: confusion, increase in heart rate, headache, or tremor
Medication interactions
Regulation of supplements


QUESTIONS AND ANSWERS  (all answers are by Dr. Santini, unless indicated)

Q:  What can caregivers do to help?

A:  Be the squeaky wheel by reminding your family member to keep hydrated, eat salty foods (even it that means the two of you eat different meals), help them check blood pressure throughout the day.  Also, give your doctor a symptom report so he/she has a full picture of challenges at home.  Doctors can’t fix what they don’t know about.  Sometimes patients get used to having low BP, so they don’t report changes to their doctor.  Caregivers can be more objective in how things used to be before BP issues arose, like seeing increased falls, more sleepiness, etc.  Caregivers need the right amount of support, as well.  Sometimes, the doctor can arrange for a nursing assistant to come into the home to do BP checks, or provide other services.  Just let your neurologist know if you are feeling the least bit overwhelmed.

Q:  How do you keep someone safe with OH without confining them to a wheelchair?

A:  Doctors should make sure the patient’s BP is good enough to have a full and active life.  It is a step-wise process, so be patient, but patients and their families or caregivers should be persistent.  Make sure all aspects of the patient’s health influencing BP is investigated, the big picture is formed and all therapies possible are attempted.

Candy:  We had a tilting wheelchair for my husband, who had MSA, so when he was feeling faint they could tilt the chair back making it easier for the body to maintain blood pressure, and preventing him from feeling awful or passing out.

Dr. Santini:  Neurologists are often able to write a letter to your insurance company recommending such a chair so that it is covered by insurance.  They are very expensive, but insurance did pay for Candy’s husband’s tilting wheelchair.

Q:  How does blood pressure affect brain function?

A:  There are several philosophies, but it is thought the blood carrying oxygen and nutrients doesn’t get to certain parts of the brain when BP is low.  The most upper parts of the brain affect both thinking and leg function.  Lack of oxygen and nutrients to these parts of the brain can cause all the symptoms mentioned; visual blurring, headaches, neck pain, dizziness, etc.

Q:  Are there any new blood pressure (BP) treatments?

A:  Yes, the newest is Northera.  Anecdotal evidence shows it to be quite effective.  But, the old ones are tried and true and new ones can be significantly more expensive.

Q: How do BP medications interact with Parkinson’s medications?

A:   There are several issues here.  Parkinson’s disease and atypical parkinsonian syndromes, like Lewy Body Dementia and Multiple System Atrophy cause problems with orthostatic hypotension.  So, the disease itself causes OH problems.  Almost every medicine doctors have to treat parkinsonian syndromes also drop blood pressure, unfortunately.  Patients should understand they need not suffer.  Let your physician boost your BP with some meds, then get your PD symptoms under control with other meds.  It is more meds, but if it improves your quality of life because you can move better and you can think and not be dizzy, etc. it’s probably worth it.  I frequently see patients who are not taking enough carbidopa-levodopa because it lowers BP.  I boost the BP, then add enough carbidopa-levodopa to improve mobility.  It’s a trade-off, but I feel quality of life is the most important thing while the patient is well enough in other ways to be active without feeling dizzy.

Q:   Can beta blockers help?

A:   With beta blockers you have to be careful. Beta blockers are often used for tremor control. We use those that don’t affect BP too much. They can be helpful for people who have very elevated heart rates.  Usually, the best treatment is to use the BP boosting agents. Oftentimes, in the absence of Northera, which can sometimes cause an increased heart rate, if you treat BP, heart rate can come down.

Q: What foods and supplements are best for OH?  Anything to be avoided?

A: It’s more how often you’re eating and how much you’re eating.  The bigger the meal, the more your BP can drop afterward.  If you are susceptible to BP drops after meals, an abdominal binder can be helpful.  Put it on about 10 minutes before a meal and keep it on for an hour afterward.  I recommend several small meals throughout the day, rather than three big meals. As far as what meals are best, we know some people have more difficulty with digestion of gluten or lactose.  Try going gluten free first for a couple weeks to see if it makes a difference for you.  If not, return the gluten and try going lactose free for a couple weeks.  It’s a good test to see if you are one of those with these digestive issues.

Q: What do you do if you have both OH and hypertension?

A: This is by far the most challenging of the group.  You have to decide on goals of care. Most commonly, people have hypertension, or high blood pressure, when they are lying flat. In that case you should avoid that flat position during the day.  At night we sometimes give a short-acting high blood pressure medicine, something like captopril, clonodine, etc.  It is more challenging when people have wide swings in BP.  It is extremely common in MSA and advanced PD.  Even standing or sitting people will have very high blood pressures, with systolic in the 180s of 190s.  Others will have extremely low blood pressures standing, with systolic in the 70s of 80s and they are passing out.  One thing doctors will do is ask patients to take their BP before they take the BP boosting medicine.  Then, the doctor will advise against taking the BP boosting meds when BP is already high, but to take it later in the day.  Sometimes, a person will need to avoid everything causing high BP.  Sometimes not treating high BP is the best option, even though that would normally not be recommended.  You have to treat which is causing the most symptoms and affecting quality of life.

Q: Can salt tablets help?

A: Yes, if you don’t like eating salt.  Talk with your doctor.  Taking a 1 gram tablet of salt in a tablet works better for some people than having salty meals.

Q: Can OH cause shortness of breath?

A: Yes!  It’s a common symptom because the upper lungs aren’t seeing as much blood as they usually do when BP is normal.  Gravity is pulling the blood down and those upper lung fields feel like they’re not breathing so people feel short of breath.

Q: Why does BP drop with exercise?

A: Sometimes it will raise, sometimes it will drop.  You may notice basketball players wearing sleeves on their ankles and legs.  Those are compression sleeves to help adjust BP.  When we exercise, the blood vessels open up so all the blood flow can get to those muscles that are working so hard.  The problem is that in OH we don’t have those extra reflexes to boost the BP back up.  Sometimes vigorous exercise can drop BP in people who have OH.  Those leg and arm sleeves can be very helpful in that case.

Q: Can OH lead to sudden death?

A:   It is a more rare circumstance.  It can certainly lead to heard dysfunction, and that could lead to sudden death.  We know that in autonomic dysfunction people can also have arrhythmias, and that can lead to sudden death.  If not exactly OH, sometimes it’s the autonomic failure that involves the heart that can lead to sudden death.

Q: Is OH more severe in MSA than in PD or LBD?  Is treatment of OH different with these three diseases?

A: Treatment tends to be similar but you have to be ready as the patient, caregiver, and healthcare provider to accept more OH in MSA. OH is typically more severe in MSA than in PD or LBD.  Sometimes very advanced PD or LBD (10+ years) may have severe BP swings, but MSA is more severe because OH occurs early in the disease course.  BP swings/OH is one of the most prominent symptoms people have in the entire MSA disease course.  Treatment goals in MSA may be different from PD and LBD as more accepting of BP swings.

These questions were sent in during the webinar:

Q: Someone has MSA w/OH but also supine hypotension (low blood pressure lying down).

A: This is easiest to treat because you just need to boost BP in all positions (lying down, sitting, and standing).  I would be concerned something else is going on and would recommend autonomic testing to determine that.

Q: Someone has primary autonomic failure (PAF) with possible MSA.  Does OH occur in PAF?

A: Oh, yes!  This whole category of PAF is a difficult one.  There is a current study looking at the natural history of primary autonomic failure.  Based on that research they are finding some of these patients eventually meet qualifications for an PD or MSA diagnosis.  Some people just have PAF, but not significant PD symptoms or progressive parkinsonism.  The main symptoms these patients have is OH and they really suffer from that.

Candy: This is how my husband was diagnosed with MSA.  First, doctors diagnosed PAF.

Q: Northera doesn’t help.  Should I stop and restart it?

A: No.  Sounds like you need to adjust the dosage.  Tell your doctor.  Sometimes, you just need to call or email, rather than make an appointment to see the doctor, for a medication adjustment.  Sometimes, they may ask you to come in in order to understand the problem.  If I had a patient report this to me and the patient was at the max dosage of 600mg/daily, I would cover all the bases with the patient.  I would reassess everything, confirming that the patient is drinking enough water, eating enough salt, wearing compression stockings. Does this patient tolerate Florinef and, if so, can we retry it?   Are you on an effective dose of Florinef or Midodrine, would adding pyridostigmine help the situation? When things get really tough, I sometimes temporarily reduces the anti-Parkinson’s medications (carbidopa-levodopa or dopamine agonist).  Sometimes reducing the PD meds isn’t what’s necessary, but increasing carbidopa can reduce side effects of levodopa, sometimes.  It’s worth looking at.

Q: Can coconut oil help OH?

A: Harmful? probably not, unless you have high cholesterol.  Ask your doctor if you should or should not be eating coconut oil, based on your health numbers.  There is no evidence that it helps.  It’s just the new magic for everything.

Q: Questioner feels faint while having a bowel movement. What can be done?

A: Either urinating or defecating activates the opposite side of the autonomic nervous system, lowering blood pressure.  People have passed out on the toilet.  Bathrooms are dangerous with hard surfaces to hit your head on when passing out.  The answer is to treat the constipation so there is no straining.  Don’t treat to the point of diarrhea because there can be straining with that, as well. Any of these may help:  Miralax, Senna, Cholase, or any stool softener. Another solution may be to put your feet onto a stool so knees are raised while on the toilet (Squatty Potty) can help defecation without straining.  Massage the lower belly while trying to poop can help move your bowel.  Best to poop after a hot meal and around the same time every day.

Q: What about SSRIs (antidepressants) for OH?

A: Yes, Prozac has been studied for use in OH. There is some research that it can help boost BP.

Q: Is Parkinson’s with OH more severe than PD without or a more rapidly progressing form of PD?

A:   Everybody who has PD has a different form of the disease. I have heard the strangest symptoms that a neurologist would consider ‘off medication’ symptoms, or those not normally attributed to PD, but happen to be attributed to that person with PD.  It’s very common for people with PD to have OH.  They are just a little unlucky because with OH you get a lot of symptoms.  Although you feel horrible and like you’re dying, sometimes, it doesn’t mean that your PD is more severe, just because you have those symptoms.  It means it’s something we need to treat and get your quality of life better.

Q: It seems OH research is focused on MSA. Do you feel that is true, and if so, why?

A: Yes, it is very true because patients w/MSA have OH symptoms early and severely in the disease course.  Researchers feel that if they can develop a treatment for OH in MSA, it will help those with PD.  I feel more studies should be done for OH in PD because improvements in OH improves cognition and physical activity for patients with PD.  Up to 30% of newly diagnosed PD patients have OH, so they would benefit from OH research.

Q: If I have severe OH, what kind of doctor should I see?

A: It depends on the specialty at different medical centers.  If you come to see a movement disorder specialist at Stanford, I have had specialized training in treating OH.  But, some movement disorder specialists prefer you see an autonomic specialist if you have OH. Other specialists who can treat OH include cardiologists or nephrologists.  You just have to find the specialist most comfortable in treating OH at the medical center where you are being treated.

Q: Is OH caused by a pathology in the brain?

A: People with MSA, LBD and PD have an abnormal buildup of the protein alpha-synuclein in certain brain cells.  These people can be affected by OH.  Other atypical parkinsonisms, like PSP, CBD, etc. that don’t have alpha-synuclein don’t have OH so we feel there is a connection between OH and alpha-synuclein.

Q: Does Stanford have an autonomic testing center?  Do you know where other autonomic testing centers are located in the US?  What is the benefit of having this testing?

A: Stanford has a very good autonomic testing center.  It is especially useful for people who have diabetes and PD, or in cases where symptoms seem more severe than what would be expected in PD so you would like to gather more information to determine if it is really MSA.  For these people, it may be a good idea to have autonomic testing. Stanford is probably best place for autonomic testing on the west coast.  Mayo Clinic in the midwest, and there are several places on the east coast are terrific, like Beth Israel.

Q: Some research shows that doctors see OH and automatically diagnose MSA.  What’s happening here?

A: I see people newly diagnosed with PD who have some OH and they have been misdiagnosed with MSA.  They actually have PD, but because PD medications lower BP, the medications can make their symptoms look more like MSA early in the course of their symptoms.  When there is a question as to whether someone has PD or MSA, autonomic testing should be done to differentiate between the two.  Seeing a movement disorder specialist rather than just a neurologist because they are specially trained to use set literature criteria that helps to differentiate between these conditions. The history of a person’s initial symptoms helps me figure out an accurate diagnosis.  Also, seeing how a person’s symptoms progress helps to determine an accurate diagnosis.

Q: What does autonomic testing look like?

A: The patient lays flat on a special bed.  There are several tests.  In one they infuse a medication that causes sweating to see how autonomic nervous system responds.  They may also have the patient do deep breathing to see if their heart rate and blood pressure responds correctly.  They also suddenly change the patient’s position from lying to standing (by tipping the table up quickly) to see how heart rate and blood pressure system responds. Depending on the body’s responses to all these different tests, they can determine if they are normal or abnormal.  If there are abnormal responses, it the problem coming from the brain or from the peripheral nervous system. That can be helpful in differentiating between disorders.

Q: What about Methotrexate?

A: That can be used if there is an immune component to the patient’s autonomic dysfunction.


Register Now! Sat, Oct 28, PSP/CBD Research Update and Family Conference

Registration is now open!

Brain Support Network will host the:

PSP/CBD Research Update and Family Conference
Saturday, October 28, 2017
Crowne Plaza Foster City (San Francisco Bay Area)
8am Continental breakfast/check-in
9am Speakers begin
5pm Conclusion

Cost: $55 per person until October 7; $65 until October 27
No registration at the door

Register now:

This conference is for families coping with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).   Professionals and anyone in the community are also welcome to attend.

The conference will be run from 8am to 5pm. The morning will feature international researchers in town for a major conference on PSPCBD, and tau. The afternoon will feature Bay Area clinicians (from UCSF and Stanford), healthcare professionals, and those on the PSP/CBD journey.

See the great speaker line-up on the agenda.

In recent days, several people have asked how this conference is different from the CurePSP conference on October 26-27.  That CurePSP conference is for international researchers. All of the talks at the CurePSP conference will be at a very high-level.  (I don’t know of any laypeople who can understand even 20% of those talks.)

It seemed like a great opportunity to ask those international researchers to stay in town through Saturday noon to give shorter and easier-to-understand talks to laypeople. That’s what we’ve done!  We’ve worked with CurePSP to know who was speaking at their conference.

Our main planning partner is Dr. Adam Boxer and the team at the UCSF Memory & Aging Center. UCSF is the lead institution for PSP and CBD clinical trials. We are lucky to have them in our backyard!

Space is limited so register now:

If the $55 ticket is a hardship for you, we do have a small number of scholarships available. Please contact us.

We are looking for sponsorship for videorecording ($2K) the conference.  Can you help us sponsor this so more people can benefit from the great conference?  Contact us.

We are also looking for an all-day volunteer:  (contact us)

  • digital photographer. (Requires someone with a digital camera, photography skills, interest in roaming around the ballroom and foyer the whole day, and good with people.)

We’ve opened up exhibitor registration here:

Soon, we’ll be opening up registration for:  (contact us)

  • RNs, LVNs, LMFTs, and LCSWs who want CEUs.  Six CEUs are being offered through the Alzheimer’s Association.

Stay tuned.

Click here for a flyer to print and share.


Recording + Notes from “Diagnosing PSP” Webinar, August 2017

Brain Support Network and Stanford University co-hosted a webinar on Wednesday, August 30th about diagnosing Progressive Supranuclear Palsy.



We’ve posted the webinar recording here —

It’s the speaker’s presentation (about 30 minutes).



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

PSP Education, by Brain Support Network



Our terrific volunteer, Denise Dagan, took notes from the webinar.

Diagnosing Progressive Supranuclear Palsy

Speaker: Kathleen Poston, MD, movement disorders specialist, Stanford University
Host: Robin Riddle, CEO, Brain Support Network
August 30, 2017


We are focusing on the diagnosis of progressive supranuclear palsy today, and particularly paying attention to why the new diagnostic criteria was developed, how it can be applied in a clinical setting both from the perspective of clinicians and the patient and patient’s family.


Why have there been revisions in the clinical diagnostic criteria?

PSP can be a very difficult disorder to properly diagnose. The more classic of the PSP syndromes, called Richardson Syndrome, is one of the easier versions of PSP to diagnose.

In several studies, only about 63% of people diagnosed with PSP, who donated their brains for scientific research, actually had PSP confirmed by autopsy.

That’s a pretty low number especially for clinical trials because when you are studying a treatment for PSP you only want to recruit people who have PSP. If it turns out only 63% of the people enrolled in your study actually have PSP, your results are askew. The results are showing you your treatment only works on about half the people in your study which doesn’t look very effective. When, in fact, it may be working very well on every person who has PSP but you can’t see it because there are so many people enrolled who don’t have PSP.


What is misdiagnosed at PSP?

Dr. Poston showed a slide showing a Venn diagram of the types of disorders commonly misdiagnosed as PSP from a study of 181 patients who’s brain underwent autopsy, including one circle labeled as the 63% who actually had PSP.

The biggest group of misdiagnosed disorders is “Parkinsonism,” which is a collection of disorders which includes Parkinson’s disease (PD), Dementia with Lewy Bodies (DLB) and a broader parkinsonism, which in these autopsy cases means the clinician thought it was some form of parkinsonism but couldn’t definitively say it was either Parkinson’s disease or Dementia with Lewy Bodies versus some other parkinsonism disorder.
This group is 13% of cases misdiagnosed as PSP during life, but found to have Parkinsonism on autopsy.

The other commonly misdiagnosed disorders were less frequent:
corticobasal degenerative disease, which is also frequently confused with PSP = 2%
frontotemporal degeneration = 3%
Alzheimer’s disease = 4%


What are the clinical features of PSP:

* Parkinsonism, a syndrome defined by axial rigidity (rigidity in the neck and trunk), postural instability (poor balance), bradykinesia (slowness of movement and facial expression muscles), reduced blink

* Supranuclear gaze palsy (SGP) – This is the feature that most accurately helps diagnose PSP. When we quickly look up, down, right, or left it is called a saccadic eye movement. When we move our eyes slowly, it is called called a smooth pursuit. These movements are controlled by the cortex of the brain, above the nucleus that controls the eye muscles (supranuclear). That is the part of the eye movement that is most impacted by PSP. Patients, at first, have trouble with the saccadic movements, and eventually have trouble looking up or down at all, even with smooth pursuit. This is in contrast to a gaze movement below the level of the nucleus (infra nuclear) in which you move the head in one plane can the eyes move around and the eyes are not affected.

* Dysphagia/dysarthria – speech and swallowing difficulties

Cognitive Profile:
* Executive dysfunction – cognitive profile / thinking challenges

* Apathy, obsessive/compulsive behaviors, lack of inhibition

When these cognitive and behavior dysfunctions are present, it can make it difficult to distinguish PSP from other types of memory problems, like Alzheimer’s disease (AD) and Frontemporal Dementia (FTD). When there’s more of a motor component to presenting symptoms, it becomes difficult to distinguish PSP from Parkinson’s disease and parkinsonisms.


The original diagnostic criteria was developed in 1996. They were based on a series of autopsy cases for people who had been followed throughout their life and were found at autopsy to have PSP in their brains. When they looked back at the clinical symptoms to see what clinical symptoms distinguished PSP from other disorders they came up with:
– Gradually progressive (to distinguish from stroke, which causes sudden changes)
– Presenting symptoms over the age of 40
– Vertical supranuclear gaze palsy
– Postural instability with a propensity to fall within the first year of symptoms

There are a lot of other supporting features but those tended to differentiate PSP from other disorders, but were unspecific, like rigidity in the neck and trunk, tendency to fall backward, poor response to levodopa, and some cognitive symptoms. These supporting features didn’t do a good job of distinguishing people who had PSP from other disorders, and what was used in the study of 181 people thought to have PSP in which only 63% actually had PSP on autopsy.

What has been identified since is that most patients would have the classic parts of PSP (supranuclear gaze palsy, and tendency to fall) early on and can be properly diagnosed within 1-3 years. But a lot of patients didn’t have those particular features early on in the disorder. Over time those symptoms tend to emerge into the classic Richardson syndrome, but it can be so many years (6 or 7 years) before those symptoms present and getting the right diagnosis. In fact, people have actually died before presenting the classic Richardson syndrome symptoms of PSP.

This is frustrating for patients, their families, and clinicians trying to only enroll people who actually have PSP in their clinical trial studies.


Dr. Poston showed a slide at time stamp 14:52 showing the accuracy of a PSP diagnosis, depending on early symptom presentation.
1. PSP Richardson syndrome – supranuclear gaze palsy & early falls = very likely properly diagnosed with PSP
2. PSP-P Parkinsonism symptoms – slowness, stiffness, subtle eye movement abnormalities, no early falls = less than 1/2 the time accurately diagnosed with PSP
3. PSP Primary Freezing of Gait – difficulty initiating walking early on. Not part of the classic Richardson Syndrome. Very difficult to diagnose, but more accurately diagnosed with PSP than those below.

These four disorders are a very small percentage of people with PSP, but they do exist and it is important to understand that. That is part of the logic behind the somewhat complex nature of the new diagnostic criteria. Because they are a small percentage, we will focus on the first three.
4. Cortobasal syndrome
5. Nonfluid Primary Progressive Aphasia
6. Behavior variant FTD
7. Cerebellar ataxia


PSP- RS / PSP Richardson Syndrome is the most common clinical variant. People presenting these symptoms are most likely to actually have PSP pathology on autopsy.
* Unexplained falls, Unsteady gait, Bradykinesia (slowness of movement)
* Personality changes (apathy, disinhibition)
* Cognitive slowing, Executive dysfunction (difficulty problem solving and organizing your day)
* Slow, spastic, and hypophonic speech, Dysphagia (difficulty swallowing)
* Impaired eye movement (slow vertical saccades, apraxia eyelid opening)
* Vertical supranuclear gaze palsy, but onset is variable, for example:
— Might not present for 3-4 years after disease onset
— May present early on as decreased velocity, amplitude of vertical > horizontal saccadic (can’t look all the way up or all the way down)
— May present as decreased or absent optokinetic nystagmus. There are some easy to use apps to test OKN in your doctor’s office.


PSP-P / PSP-Parkinsonism is the one that has the most difficulty distinguishing between PSP and Parkinson’s disease or PSP and Dementia with Lewy Bodies. This subtype of PSP was identified in the last 10 years by an autopsy study done in the UK where they looked at a bunch of patients who had donated their brain and had PSP on autopsy but did not have a diagnosis of PSP during their life. A lot of those patients had features very similar to classic Parkinson’s disease, particularly early on.

We always thought PSP should be very symmetric without a lot of tremor, but these folks had a lot of asymmetry and a lot of tremor and a good many of them had an early, good response to Levodopa. As years progressed this response went away and the asymmetry became symmetric, but early on it really resembled classic Parkinson’s disease and this made us realize that early on some patients are early to distinguish.

It was uncommon for these people with PSP Parkinsonism to develop the classic Levodopa-induced dyskinesias, they didn’t have the autonomic dysfunction (blood pressure drops common in Parkinson’s), or hallucinations common in Dementia with Lewy Bodies (DLB) and that’s really important in distinguishing PSP from DLB. DLB is a variant of Parkinson’s disease where the visual hallucinations are a distinguishing feature. Asking whether visual hallucinations are present is key in distinguishing PSP from DLB.

(Slide summary)
PSP-P Parkinsonism. People presenting these symptoms are less than 1/2 the time accurately diagnosed with PSP.
* Early features of PD
* Asymmetric onset tremor, Bradykinesia, Rigidity, Moderate initial response to Levodopa
* Resembles idiopathic Parkinson’s disease
* Levodopa-induced dyskinesias, autonomic dysfunction, and visual hallucination are less common in patients with PSP-P (compared to the patients with PD)


PSP-PGF / PSP Primary Gait Freezing – very tough to diagnose but important to recognize it is a variant of PSP as almost all patients have PSP pathology at autopsy.
* Pure Akinesia with Gait Freezing – primarily have difficult initiating walking, feet really stick to the floor
* Isolated gait disorder (5-6) years before development of other PSP-RS
* Progressive gait disturbance with start hesitation
* Subsequent freezing of gait
* Sometimes difficulties with initiating or completing speech or writing
* Without tremor, rigidity, dementia, or eye problems during first 5 years


The new 2017 diagnostic criteria:
* Sporadic occurrence (to distinguish from stroke)
* Age 40 or older at onset
* Gradual progression of PSP-related symptom
* Core Features:
— Oculomotor dysfunction
— Postural instability
— Akinesia
— Cognitive dysfunction

What does Probably PSP mean?
We cannot say someone definitely has PSP without autopsy finding. It is not possible at this point, based on clinical exam, brain imaging, or blood test to say someone definitely has PSP. Research is underway.

Highly specific: If someone meets probable PSP criteria, there is a very high chance that the underlying pathological diagnosis will be PSP. These are the people we are most certain about.

Good for use in clinical trials where you only want to enroll people who have the real underlying pathology.

But not very sensitive for PSP. Most people who have PSP pathology will not fully meet the Probable Criteria. Means that if you don’t have Probable PSP based on criteria, there’s still a really good chance you have PSP.


Slide at time stamp 26:10 showing the diagnostic levels of certainty when certain symptoms are present early on. In all cases, the oculomotor dysfunction must be present or it would be too hard to distinguish from PD or DLB.
To be diagnosed with Probable PSP-RS (Richardson Syndrome) you must have:
1. Either a vertical supranuclear gaze palsy or slow velocity of vertical saccades AND
2. Either repeated unprovoked falls within 3 years or a tendency to fall on the pull-test within 3 years.

To be diagnosed with Probable PSP-P (Parkinsonism) you must have:
1. Either a vertical supranuclear gaze palsy or slow velocity of vertical saccades AND
2. Parkinsonism, akinetic-rigid, predominantly axial, and levodopa resistant or Parkinsonism, with tremor and/or asymmetric and/or levodopa responsive.

To be diagnosed with Probable PSP-PGF (Gait Freezing) you must have:
1. Either a vertical supranuclear gaze palsy or slow velocity of vertical saccades AND
2. Progressive gait freezing within 3 years


Dr. Poston showed a slide at time stamp 29:30 showing imaging scans that are helpful in diagnosis when they appear. Similar to the eye movement abnormalities, when doctors see these they are very helpful in making a diagnosis. Unfortunately, most patients do not present so clearly on imaging. The lack of these distinguishing scan features does not mean you do not have PSP, it just means this tool didn’t present any compelling evidence for a PSP diagnosis. Clinical observation will have to suffice.
* The hummingbird sign shows thinning of the midbrain, which is classic to PSP
* The morning glory sign or mickey mouse ears, also shows thinning of the midbrain.


Dr. Poston showed slides of PSP pathology under the microscope at autopsy at time stamp 30:33, and discussed:
* Neurofibrillary tangles or neuropil threads or both, in the basal ganglia and the brainstem.
* Microscopic features:
— Neuronal loss
— Gliosis
— Neurofibrillary tangles
— Neuropil threads
— Tufted astrocytes
— Oligodendroglial coiled bodies


Stanford/BSN Webinar – Orthostatic Hypotension in PD, MSA, and LBD, 9/18

Brain Support Network (BSN) is pleased to announce its second webinar with Stanford Movement Disorders Center, one of our Northern California partners.

Update:  See our notes from the webinar here.

Join us for a free, one-hour webinar on orthostatic hypotension in Parkinson’s Disease, multiple system atrophy, and Lewy body dementia. The speaker is Stanford movement disorders specialist Veronica Santini, MD. And the host is long-time BSN MSA group member Candy Welch.  Please spread the word!

What is orthostatic hypotension?  It is the sudden drop in blood pressure upon change in position such as sitting up from lying down in bed or standing up from a seated position.


Orthostatic Hypotension in Parkinson’s Disease, Multiple System Atrophy, and Lewy Body Dementia

When: Monday, Sept. 18, 2017
2-3pm Pacific Time (US and Canada)

Speaker: Veronica Santini, MD, movement disorders specialist, Stanford Movement Disorders Center

Register in advance for this webinar:

After registering, you will receive a confirmation email containing information about joining the webinar.  Save that email as it contains an important link with the meeting ID embedded.  You will receive reminders.

Note: If you can’t make it on September 18th, we encourage you to register for the webinar so that you will be alerted when the recording is available online.


Further details on the webinar topic:

Dr. Veronica Santini, a movement disorder specialist, has extensive experience with orthostatic hypotension in the context of three disorders — Parkinson’s Disease (PD), multiple system atrophy (MSA), and Lewy body dementia (LBD).

Dr. Santini will address these topics:

  • what is orthostatic hypotension (OH) and how is it diagnosed?
  • is OH different in PD, MSA, and LBD?
  • what are the non-pharmacological treatments?
  • what are the pharmacological treatments?

There will be time for audience questions on OH.


Further details on the speaker:

The speaker is Dr. Veronica Santini, a movement disorders specialist at Stanford University. Dr. Santini has special interest in the autonomic system.  She takes a holistic approach to patient care and seeks to integrate conservative and alternative therapies where appropriate.


Further details on the webinar host:

The webinar will be hosted by Candy Welch, whose husband Bob had multiple system atrophy (MSA), confirmed through brain donation. She is on the Board of Brain Support Network, a nonprofit focusing on the four atypical parkinsonism disorders, including multiple system atrophy and Lewy body dementia. Candy will be speaking about brain donation for multiple system atrophy at the national MSA conference in October in Nashville.


Register in advance for this webinar:


Questions? Please contact Robin Riddle.

Sept 2017 Parkinson’s Support Group Mtgs – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California Parkinson’s Disease (PD) support group meetings for September 2017.

With my Brain Support Network atypical parkinsonism (DLBPSPMSACBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are PD support group meetings:

* Roseville, Tues 9/5: speech therapist speaking about benefits of seeing a speech pathologist

* Soquel (Santa Cruz County), Wed 9/6: Dr. Salima Brillman, movement disorders specialist, will be speaking about hallucinations and delusions that can occur in PD and Lewy Body Dementia. Note that her talk is sponsored by and written by a pharmaceutical company.

* Chico, Wed 9/6: physical therapist addressing exercises for those with PD

* Brentwood, Wed 9/6: Dr. Salima Brillman, movement disorders specialist, will be speaking about hallucinations and delusions that can occur in PD and Lewy Body Dementia. Note that her talk is sponsored by and written by a pharmaceutical company. (Looks like Dr. Brillman has a lot of driving scheduled for 9/6.)

* San Francisco/Kaiser, Tues 9/12: speaker addressing dance for PD. Note that many in our Brain Support Network do attend PD dance classes…cautiously.

* Menlo Park/Little House, Wed 9/13: Dr. Salima Brillman, movement disorders specialist, will be speaking about hallucinations and delusions that can occur in PD and Lewy Body Dementia. Note that her talk is written by a pharmaceutical company though we’ve asked for the number of slides to be reduced. (Sponsorship is not allowed.) This is a new meeting location! The group is no longer at Avenidas in Palo Alto.

* Millbrae/Magnolia, Thurs 9/14: Dr. Salima Brillman, movement disorders specialist, will be speaking about hallucinations and delusions that can occur in PD and Lewy Body Dementia. Note that her talk is sponsored by and written by a pharmaceutical company.

* Lincoln, Tues 9/19: Kaiser Roseville neuropsychologist will address how cognition can impact motor symptoms in PD

Generally, I recommend driving no more than 30 minutes to attend any of these meetings. If you attend a meeting and learn anything, please share with me so that I can share with others!

Do you need to know the support group meeting location, day/time, contact info, and how to RSVP if required? Please refer to the Stanford Parkinson’s website for all Northern and Central California support groups:

As always, I’ve deleted the deep brain stimulation-related talks.



San Jose/Willow Glen
Friday, 9/1, 10am-noon  (speaker starts about 10:20am)
Guest Speaker:  Terry Nellis, Neptune Society
Topic:  Cremation instead of a casket
RSVP?:  No.

Friday, 9/1, 10:30am-noon
Guest Speaker:  Hip Skind, MD, emergency room physician and member of Board, Kaweah Delta Hospital
Topic:  Question and answer
RSVP?:  No.

Tuesday, 9/5, 1:30-3pm
Guest Speaker:  Kimberly Kinney, SLP, speech pathologist, Sutter Roseville Rehab Services
Topic:  General benefits for PD patients to see a speech pathologist
RSVP?:  No.

Soquel (Santa Cruz County)
Wednesday, 9/6, 1-2:30pm
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, The Parkinson’s Institute, Sunnyvale
Topic:  PD Psychosis
RSVP?:  No.

Wednesday, 9/6, 1:30-3pm
Guest Speaker:  Erin Edwards, PT, Enloe Hospital Rehab
Topic:  PD exercise
RSVP?:  No.

Wednesday, 9/6, 6:30-8pm  (New meeting day)
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, The Parkinson’s Institute, Sunnyvale
Topic:  PD Psychosis
RSVP?:  No.

Saturday, 9/9, 10am-noon
Program:  Discussion groups – those with PD and caregivers
RSVP?:  No.

Yuba City (Tri-Counties)
Monday, 9/11, 1-2pm
Guest Speaker:  Paulla Hyatt-McIntire, attorney
Topics:  Medi-Cal eligibility, recovery, tips to prevent elder abuse, and estate planning decisions
RSVP?:  No.

Monday, 9/11, noon-1:30pm
Program:  Panel of group members discussing various stages of PD
RSVP?:  No.

Monday, 9/11, 2-3:30pm
Guest Speaker:  Stephanie Fiola, RN, AbbVie
Topic:  Treatment for advanced Parkinson’s
RSVP?:  No.

Pacific Grove (Monterey County)
Tuesday, 9/12, 3-4:30pm
Guest Speaker:  Peter Lin, MD, movement disorders specialist, Valley Parkinson Clinic, Los Gatos
Topic:  New developments in PD
RSVP?:  No.

San Francisco/Kaiser
Tuesday, 9/12, 4:30-6pm
Guest Speaker:  Judy Leash, Dance for PD
Topic:  Dance for Parkinson’s
RSVP?:  No.

Menlo Park/Little House  (New meeting location!  No longer at Avenidas in Palo Alto.)
Wednesday, 9/13, 2-3:30pm
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, The Parkinson’s Institute, Sunnyvale
Topic:  Parkinson’s hallucinations and delusions – overview and treatment
RSVP?:  No.

Thursday, 9/14, 1:30-3pm
Discussion Topic:  Importance of financial and medical durable powers-of-attorney
RSVP?:  No.
Thursday, 9/14, 1:30-3pm
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, The Parkinson’s Institute, Sunnyvale
Topic:  PD – more than motor symptoms
RSVP?:  No.
Walnut Creek (Mt. Diablo)
Saturday, 9/16, 9am-noon  (speaker 10:45am-11:45am)
Guest Speaker:  Marilyn Stebbins, PharmD, UCSF School of Pharmacy
Topic:  All you ever wanted to know about pharmacy
RSVP?:  No.

Tuesday, 9/19, 10-11am
Guest Speaker:  Kimberly Lanni, PhD, neuropsychologist, Kaiser Roseville
Topic:  How cognition can impact motor symptoms in PD
RSVP?:  No.

Tuesday, 9/19, 1:30-3pm
Guest Speaker:  Suzanne Mortensen, ADT Alert Systems
Topics:  Newest technology in medical alert systems and preventing falls
RSVP?:  No.

San Jose/The Villages
Tuesday, 9/19, 2-3pm, Cribari Conference Room
Guest Speaker:  Jacque Duvall, behavioral health instructor, Kaiser Santa Teresa
Topic:  Sleep and insomnia
RSVP?:  Yes, required if you are not a resident of The Villages. Contact Alice Pratte, group leader, 408-223-8033, at least 24 hours in advance to obtain community access.

Mill Valley (Marin County)
Friday, 9/22, 1-3pm (guest speaker from 1-2pm)
Guest Speaker:  Catherine Printz, DPT, physical therapist, UCSF
Topic:  Exercise is for everyone
RSVP?:  No.

Monday, 9/25, 7-9:30pm
Guest Speaker:  Cynthia Eaton, movement class instructor, Kaiser Hayward
Topic:  Exercise for PD
RSVP?:  No.

Tuesday, 9/26, 1-2:30pm
Guest Speaker:  Stephanie Fiola, RN, AbbVie
Topic:  Treatment for advanced Parkinson’s
RSVP?:  No.

Union City/Mark Green Sports Center
Saturday, 9/30, 12-2pm  (special meeting day/time)
Guest Speaker:  Laurice Yang, MD, movement disorders specialist, Stanford
Topic:  Latest research on medication management and innovative strategies for managing PD symptoms
RSVP?:  No.

Carbonated liquids may help swallowing dysfunction (small Swedish study)

This is interesting research from Sweden on the effect of carbonated liquid on swallowing dysfunction. Though the study was done on 48 patients with Lewy body dementia, the findings likely apply to all in the Brain Support Network community.

Two interesting points were made:

1- While 40 patients had swallowing dysfunction confirmed through videofluoroscopy, 14 of these did not perceive they had swallowing symptoms.

2- Out of the patients with swallowing dysfunction, 87% had “an overall improved swallowing function with carbonated liquid.” This was true even that the pharyngeal transit time of carbonated liquid was quicker than think liquid or thickened liquid.

Of course you can test whether carbonated liquids work (for you or for your family member) by requesting they be tried during videofluoroscopy.

The abstract is below.



Clinical Interventions in Aging. 2017 Aug 8;12:1215-1222.

Effects of carbonated liquid on swallowing dysfunction in dementia with Lewy bodies and Parkinson’s disease dementia.

Larsson V, Torisson G, Bülow M, Londos E.


Swallowing dysfunction is an increasingly recognized problem in patients with dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD), which can result in aspiration pneumonia and death. Few studies have examined potential ways of improving swallowing function in this fragile patient group. The aim of this study was to evaluate swallowing dysfunction and carbonated liquid using videofluoroscopy in DLB and PDD patients.

A total of 48 patients with DLB and PDD were referred for a clinical examination with videofluoroscopy. Descriptive overall assessments were provided at the time of the examination regarding swallowing function and the effects of different modifications, including carbonated thin liquid (CTL). Additionally, a repeated measures quantitative retrospective analysis has been performed comparing 1) thin liquids; 2) thickened liquids and 3) CTLs, with regard to the quantitative variables 1) pharyngeal transit time (PTT); 2) pharyngeal retention and 3) tracheal penetration.

In all, 40/48 (83%) of the patients had a swallowing dysfunction, which was confirmed on videofluoroscopy, with 34/40 (85%) patients having a pharyngeal-type dysfunction. A total of 14/40 (35%) patients with an objective swallowing impairment did not have any subjective swallowing symptoms. Out of the patients with swallowing dysfunction, 87% had an overall improved swallowing function with carbonated liquid. PTT for carbonated liquid (median 633 ms, interquartile range [IQR] 516-786 ms) was quicker than for thin liquid (760 ms, IQR 613-940 ms, P=0.014) and thickened liquid (880.0 ms, IQR 600-1,500 ms, P<0.001). No significant effect was seen in residue or penetration.

The majority of patients with DLB or PDD had a swallowing dysfunction, sometimes without subjective swallowing symptoms, which improved with carbonated liquid. This highlights the importance of investigating patients with videofluoroscopy and to carry out a prospective interventional study to further evaluate carbonated liquid, also addressing the effects on quality of life, aspiration and mortality.

“Managing Advanced Parkinson’s” – Professional Caregiver Training Notes

There was a training program called TULIPS, designed for professional caregivers (such as nurses in nursing homes) who have clients with Parkinson’s Disease. The program is being revised and is no longer available. But we located an old copy.

Brain Support Network volunteer Denise Dagan recently looked over the TULIPS training for “Managing Advanced Parkinson’s Disease” as the diseases in our community are more similar to advanced PD than early or middle-stage PD.

Here are Denise’s notes from the training. Interspersed in brackets are a few comments from Denise, whose father had Lewy Body Dementia.


Denise’s Notes from

Managing Advanced Parkinson’s Disease
TULIPS: training for better Parkinson’s care
Struthers Parkinson’s Center, Minneapolis, MN


Section 1 – Planning Ahead

Create back up plans for what to do:
– if you have an urgent errand
– if you need home maintenance or repair
– if you become ill
– if your loved one becomes ill
– if you both become ill.

[This is the question we posed to my Mom, “What if you wake up with the flu and can’t help Dad with anything, even for just one day?” She didn’t have an answer and that allowed us to move forward with hiring in-home care.]


Section 2 – Acknowledging Changing Roles and Relationships

– Maintain intimacy through touch, conversation, shared times and humor.
– When communicating becomes difficult for both speaker and listener, set up hand signals or other gestures to reply to yes/no questions.
– A speech-language pathologist may provide additional suggestions to enhance communication.


Section 3 – Deciding Where to Live

Remaining in Your Own Home:
– Will a ramp be needed for outside access?
– Do floor surfaces easily accommodate wheelchair transport?
– Are the bedroom and bathroom accessible?
[Have an occupational therapist perform a home assessment and make suggestions about accessibility and safety.]
– Attractive bins or baskets will disguise needed equipment while maintaining appealing surroundings.

Moving to a New Home:
– Consider both present and potential needs, including help with meal preparation, medication set-up, personal care and/or complex medical management. Find out how much these services cost [either in-home or if you are researching a facility].
– Investigate facilities, comparing services and prices, available staffing assistance and experience with caring for those with Parkinson’s disease.

Creating Comfortable Surroundings:
Wherever you live your surroundings should be comfortable, functional, and relaxing. Nobody wants to spend time in an institution
– Consider a pleasing fragrance.
– Include meaningful objects, mementos, achievements, photographs or family, friends, vacations, pets, etc.
– Bring nature indoors for those who cannot go outdoors frequently. Plant a garden or hang a bird feeder where they are easily viewed.
– Play favorite music to set a mood and facilitate conversation.
– Use soft fabrics and blankets to appeal to the touch.
– Connect through a warm soak, followed by a hand and/or foot massage.


Section 4 – Caregiver Self Care

– Learn proper techniques to prevent injury during caregiving responsibilities. [Especially to protect your back.]
– Write dates you need respite support on a calendar and ask those who offer help to “sign up” for one or more of these dates.
– Learn about respite care options through family, friends, neighbors, friends, faith communities or other community services. Investigate adult day programs, respite volunteer programs, or facilities that offer short-term stays in the event of caregiver vacation, illness, or need for time away. Network with other caregivers or visit with a local social worker or senior services agency to identify available options.
– Avoid negative people and unrealistic expectations.


Section 5 – Assisting Movement

Someone with Parkinson’s disease may require assistance at one time of day, while being independent another time. Offer assistance as needed. Consider making an appointment with a physical or occupational therapist who can offer proper training for caregivers, suggest appropriate aids and instructions for use, and make referrals to additional community resources.

– Before starting to move, a gentle rocking or rolling motion will help stiff muscles to relax. Avoid quick, pulling, or jerking movements.
– Offer hand-over-hand assistance as needed.
– A transfer belt around the waist provides the caregiver with a firm grasp and added stability when assisting with walking or transfers.
– Coordinate efforts by arranging a signal (i.e. “1-2-3 stand”) when working together. Count slowly and give adequate time to respond.
– Transfer “pivot discs” may be appropriate for those who have difficulty turning feet when moving from chair to bed or toilet. Visit a therapist for instruction on proper use.
– Mechanical lifts may be used for those unable to bear their own weight during transfers.
– Limit conversations when moving to allow greater focus on walking or transfers.
– Use color contrast when choosing equipment (i.e. install a white grab bar on a dark colored wall) for potential vision changes.


Section 6 – Providing Mealtime Assistance

– Avoid tough, dry, or crumbly textures.
– Small, more frequent meals may be better for those with low blood pressure, fatigue, or who note feeling full quickly.
– Alternate between liquids and solids at mealtime.
– Allow adequate time for chewing and swallowing.
– Offer ice chips or lemon ice to aid swallowing.
– Give medications in applesauce to make swallowing pills easier.
– Do not feed, offer fluids or give medications when someone is lying down.
– Raise height of tray or plate to make eating easier, especially for those with neck immobility or vision changes.
– Consult a speech-language pathologist if coughing, choking, or recurrent lung infections occur.
– Feeding tubes may be considered for those with severe problems, but should be carefully considered with the individual, family and the health care team.


Section 7 – Dental Care

– Use an antiseptic mouthwash twice daily to decrease plaque and kill bacteria.
– Use an electric toothbrush and toothpaste.
– Dairy products and sugary foods may increase drooling.


Section 8 – Toileting

Bladder Changes:
– Stay well hydrated.
– Allow plenty of time to use the toilet.
– Work with a physical or occupational therapist to learn ways to help the person with Parkinson’s transfer to the toilet and avoid injury.
– A pad placed inside an incontinence brief adds extra absorbency.
– Use disposable or washable pads on the bed to protect the mattress and reduce laundry.
– Use a urinal (available for both men and women) bedpan, or bedside commode to reduce bathroom trips at night.
– Condom catheters are a user-friendly solution for urgency, frequency, and incontinence.
– Indwelling catheters may be placed in those with more significant bladder problems. Ask your doctor.

Managing Constipation:
Try these steps and contact your nurse or doctor if bowel movements do not occur at least every 3 days.
– Increase fiber and fluids.
– Try more regular activity (position changes and/or exercise).
– Use over-the-counter stool softeners, as needed.


Section 9 – Skin Care

As persons with Parkinson’s disease age, their skin may become fragile and prone to break down. Suggestions to help prevent pressure sores and infection include:
– Change position every two hours.
– Massage lotion into the skin to prevent dryness and improve circulation.
– Be observant for redness, blisters, or open sores. Report skin changes promptly to prevent a more serious problem.
– Plastic coating and tapes from incontinence products can cause irritation. Avoid contact with the skin.
– Use heel/elbow protectors for added skin protection.
– If in a wheelchair, obtain a cushion to lessen the risk of getting a pressure sore.

When bathing:
– Make sure skin folds are thoroughly washed and dried.
– Consider a sponge bath for those with limited mobility or unsafe transfers to the tub or shower.
– A home health aide can offer bathing assistance if this task becomes too difficult or time consuming for a family caregiver.

When in bed:
– Change clothing or bed linens more frequently if increased sweating is a problem
– Use an “egg crate” or alternating pressure mattress to help prevent skin pressure when in bed.


Section 10 – If Someone Falls

– Work with a physical therapist to learn safe and proper techniques to help someone get up from a fall.
– Do not hurry to get up. First, check for injuries. Some people need to rest before attempting to rise.
– If the person who fell is unable to get up, make him/her as comfortable as possible until help arrives.
– If able, scoot to a heavy piece of stable furniture, then move onto hands and knees before attempting to get up.
– Consider using knee or elbow [or head?] protectors for those having frequent falls.
– Consider special clothing with added cushion over hip joints.
– Create a “back up” plan for assistance with rising. Do you have a cell phone, medical alert system, family member or neighbor?


Section 11 – Thinking changes

Not all people with Parkinson’s disease develop severe thinking changes, which can include increased forgetfulness, confusion, compulsive behaviors, paranoia, anxiety, or personality changes. Promptly report any new or sudden changes in thinking or behavior to your health care team. Medications may need adjusting or medications may be prescribed for depression, declining memory, or hallucinations. Seek counseling, if needed.

Thinking changes can worsen when someone is ill, hospitalized, or in an unfamiliar environment.

Provide adequate time to allow response to questions or comments to maintain dignity and self-esteem.

What to Say:
– Provide simple 1-step instructions. Too many words can be overwhelming.
– Repeat instructions for those with memory problems.
– Avoid confrontation. Telling someone who is confused or having hallucinations that they are wrong usually makes them more upset.
– Speak in reassuring tones and try to divert their attention from the situation.
– Avoid using negative humor or sarcastic remarks which may be misinterpreted.

Things to Do:
– Set up clothing or toiletries in order of use.
– Establish a daily routine and stick to is as much as possible. Use a calendar or white board to provide reminders.
– Avoid multiple conversations or activities at the same time. This may add to confusion and anxiety.
– Speak face-to-face.
– Be tolerant of remarks or actions that may be uncharacteristic of previous personality of temperament.
– Reduce unrealistic expectations.
– Register for the “Safe Return” program sponsored by the Alzheimer’s Association (, which identifies those who become lost or separated from their caregivers.


Section 12 – Ideas and Suggestions for Activities

– Game shows, sharing a crossword puzzle, watching a nature or history program on TV.
– Provide videos or books on art, travel, architecture, or animals. For those with vision changes, try books on tape or CD.
– Find ways in which a person can participate in familiar activities. (i.e. give a hobby fisherman a tackle box to organize – remove the hooks, or have a home maker fold laundry or wipe counters)
– Petting, grooming, or playing with pets provides companionship, regular touch, physical and mental stimulation.
– Invite visits from relatives, friends, and neighbors.
– Attend an adult day program.
– Maintain connections with your faith community, read daily devotions or other meaningful passages, and speak with clergy.
– Set up a “relaxation station” with headphones to play nature sounds or soft music to decrease restlessness or anxiety.
– Schedule rest periods throughout the day, but avoid excessive daytime sleeping.
– Exercise! If following instructions is not possible, throw a ball or play balloon volleyball.
– Assist with a few extra arm & leg motions while dressing, bathing or other cares for more exercise.


Section 13 – Choosing a Wheelchair

Schedule an appointment with an occupational or physical therapist to find out which chair is best for individual needs. Visit a medical supply store prior to purchase. Check with your insurance to find out what type of chair is covered.

– A lightweight chair is easier to lift in/out of a car.
– A reclining chair back is helpful for those with posture changes or low blood pressure, or who needs to rest during the day.
– Footrests are important, especially when a caregiver is pushing the chair.
– Elevating leg rests may be more comfortable.
– Desk-style arms may allow easier positioning at a table for eating and other activities.
– Bolsters may improve sitting posture in the chair.
– Obtain a cushion that offers a firm sitting base and skin protection.
– ALWAYS lock wheelchair brakes prior to transfers. Clearly mark brake levers with colored tape for easier use.


Section 14 – Pain Control

– Report pain promptly to the health care team. Medication adjustment may help reduce excessive stiffness and/or muscle cramping.
– Typically, over-the-counter pain relievers can be safely used with Parkinson medications. Confirm with your physician.
– Warm packs may aid in pain control. Avoid electric heating pads, which may burn. Microwaveable or air-activated heat wraps are safer.
– Pain from falls or other accidents may be better controlled with ice packs to reduce swelling.
– Massage can aid circulation and decrease soreness.
– Use cushions as needed for comfort and support. Avoid using too many pillows, which contribute to a flexed posture.
– Increased wandering, agitation, or unexplained crying in those with dementia can be a sign of pain.
– Visit a physical therapist for specific pain evaluation and additional recommendations.


Section 15 – Approaching End of Life

Do Not Resuscitate (DNR):
There should be a frank and honest discussion about what should be done in the event of a life-threatening emergency. A DNR order means that no lifesaving techniques will occur in the event of the loss of heartbeat and/or breathing. These wishes must be declared to a physician and signed documentation must be completed. A copy must be shown to emergency personnel. A “living will” alone is often not enough to ensure these wishes are carried out.

Choosing Hospice Care:
Hospice is available to anyone with limited life expectancy and emphasizes comfort care rather than aggressive treatment. Quality, rather than quantity, of life is stressed for both care receiver and care giver. Emotional, spiritual, and practical support is provided based on individual needs. Professional medical care continues throughout.

– A physician referral is required.
– Check to see if hospice is covered by your insurance. [Hospice is covered by Medicare.]
– There are many hospice services in urban areas to choose from.

[Prior to hospice care, ask your doctor about palliative care. Palliative care focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Medicare Part B may cover some palliative care treatments and medications, including doctors visits, nurse practitioners, and social workers.]

“Grit, Grace, and Resilience: The Story of Successful Caregiving” Webinar, Aug 30

Family Caregiver Alliance is hosting a webinar for caregivers to those with dementia this Wednesday, August 30th, 11am to noon PT. Details are:

Grit, Grace, and Resilience:
The Story of Successful Caregiving

Caring for someone with dementia is a demanding and enduring challenge. It takes our best selves and all the support we can get from those in our communities. This webinar is a reflection on ways those who provide care can sustain their health and well-being throughout the caregiving journey.

* Learn why accepting the situation is important.
* Identify three tools to help balance safety and independence.
* Learn healthy coping strategies.

Speaker: Sarah Dulaney
Sarah Dulaney earned a Master of Science degree in gerontological nursing at UCSF and is certified as a Geriatric Clinical Nurse Specialist by the American Nurses Credentialing Center. For the past 14 years, Sarah has worked with adults with cognitive impairment in community, long term care and hospital settings.  The focus of Sarah’s work is on improving care delivery and support for patients with dementia and their caregivers in whatever setting they may live. She finds joy in “sharing the moment” with people with dementia.

When: Wednesday, August 30, 11 a.m. to 12 noon (PT)

Cost: No charge

Contact: Calvin Hu, [email protected], (415) 434-3388 ext. 313


Results from AbbVie phase 1 study of tau antibodies in PSP

At the recent Alzheimer’s Association International Conference, reports were given on phase 1 trials of tau antibodies. Tau is the protein involved in Alzheimer’s, progressive supranuclear palsy, and corticobasal degeneration. Phase 1 studies are focused on safety, not efficacy.

Alzforum posted a summary over the weekend on this tau research that involved PSP volunteers. Basically, the experimental drug seemed safe, and AbbVie is proceeding to a phase 2 trial in PSP. UCSF is one of the trial sites.

You will hear plenty more about this research is you attend our October 28th PSP/CBD Research Update and Family Conference in the SF Bay Area. Registration will open soon. We are hoping that AbbVie will sponsor part of our conference. Keep your fingers crossed!

Here’s a link to the Alzforum summary about this PSP research:

High-Dose Aβ and Tau Immunotherapies Complete Initial Safety Tests
Series – Alzheimer’s Association International Conference 2017
27 Aug 2017