“Delirium Makes its Own Mark on Cognitive Decline” (Alzforum)

A comprehensive study of delirium and neurodegeneration was published last month in the journal JAMA Psychiatry.  The researchers wanted to learn “whether delirium worsens neurodegenerative pathology that’s already in the brain, or causes decline through a separate process, or both.”  Note that researchers relied on donated brains of those who suffered from neurological disorders — some of whom also had suffered delirium.  (If you are interested in brain donation, Brain Support Network can help your family make those arrangements!)

An Alzforum (alzforum.org) article about this research makes several key points about how delirium can hasten neurodegeneration and how delirium should be prevented:

* “[Delirium] contributes to cognitive decline independently of Aβ, tau, Lewy bodies, or vascular disease. But combined with any of these pathologies, delirium can quadruple the rate of memory loss.”

* “Delirium hastens cognitive decline in patients who have Alzheimer’s disease and increases the risk for dementia in older people who become delirious after surgery.”

* The findings suggest “delirium and pathology interacted to accelerate decline even further.”

* The “findings are a call to take delirium more seriously.”

* A clinician not involved in the study “said this study had tremendous health implications. ‘This creates an amazing impetus for public health agents to focus on delirium prevention as a way to reduce the negative burden on brain health.’ Almost half of cases are preventable by simple, inexpensive methods, ensuring people get optimal sleep, pain medication, fluids, and exercise in the hospital, he said (Hshieh et al., 2015).”

Here’s a link to the Alzforum article:


Delirium Makes its Own Mark on Cognitive Decline
03 Feb 2017


“Medicare’s Coverage of Therapy Services Again Is In Center of Court Dispute” (KHN)

Incredibly, Medicare officials and consumer advocates are back in court again over the denial of therapy services (PT, OT, ST) to Medicare patients.

Here are some highlights from yesterday’s Kaiser Health News article:

* “Four years after Medicare officials agreed in a landmark court settlement that seniors cannot be denied coverage for physical therapy and other skilled care simply because their condition is not improving, patients are still being turned away. … The settlement affects care provided by a trained professional in a patient’s home, nursing home or the provider’s private office that is medically necessary to maintain the patient’s condition and prevent deterioration.”

* “Several organizations report that the government’s initial education campaign following the settlement has failed.”

* “‘We still regularly get calls from people who are told they are being denied coverage,’ said Peter Schmidt at the National Parkinson Foundation, based in Miami. Denials sometimes occur because physical therapy providers use a billing code that still requires the patient to show improvement. Although Parkinson’s is a degenerative brain disease, Schmidt said physical therapy and exercise can help slow its progress.

* “‘There was a long-standing kind of mythical policy that Medicare contractors put into place that said Medicare only pays for services if the patient could progress,’ said Roshunda Drummond-Dye, director of regulatory affairs for the American Physical Therapy Association. ‘It takes extensive effort to erase that.'”

Here’s a link to the full article:


Medicare’s Coverage Of Therapy Services Again Is In Center Of Court Dispute
Kaiser Health News
By Susan Jaffe
January 30, 2017



“Everything You Need to Know About Caregiving for Parkinson’s Disease” – Book Review

Brain Support Network volunteer Denise Dagan recently read the book “Everything You Need to Know About Caregiving for Parkinson’s Disease,” and shared a short review.



Denise’s Review of

“Everything You Need to Know About Caregiving for Parkinson’s Disease”
by Lianna Marie, published 2016

This book is #6 on Caring.com’s list “8 of the Best Books About Caregiving” published in 2016.

The author is a fellow caregiver, Lianna Marie.  Her mother has had Parkinson’s for 25 years.  The writing style and organization is direct, no-nonsense, concise, and comprehensive.  The font is even a bit bigger and double-spaced for older eyes.  I quite enjoyed the short, thoughtful, quotes from famous people at the beginnings of each chapter.

My criticisms would be that it seems not to go into depth on any topic, but wait until you get to Part 5, “Getting Practical: Caregiving for Parkinson’s.”  Here’s where we get to the meat of this book.  Also, it’s a tad repetitive, but she’s emphasizing some points, and topics do overlap.  Finally, she only cites [only two websites as sources of online information].

The organization is in nine parts:

1. Caregiving 101 – only nine pages, but they spell out the practical burdens of caregiving and ask you to consider whether you should take on the task.

2. What to Expect – You’ve said, “Yes.”  Now, you need a plan.  Get documents in place, make a budget, set boundaries, and get help.

3. Emotional Aspects – Notice this loop: “…you get stressed out from your caregiving duties, which then makes your loved one stressed out, causing them to lose mobility, which leads to both of you being more stressed out, and so on.”  Avoid the loop by taking her advice.  I also like that she talks specifically about guilt, and resentment in this section.

4. General Caregiving – “Caregiving is a process of trial and error.  You will make mistakes from time-to-time, but learning from them is the key.”  This section briefly discusses some things not usually covered in a caregiving book, like, How to help when help isn’t wanted, What not to do when caregiving, and What to do when no one will help.  I yearned for more detail on that last topic, but a book can’t solve such complex problems, and it does get you thinking along the right lines.

5. Parkinson’s Caregiving – The meat of the book begins by giving a heads-up for early, mid, and late stage Parkinson’s caregiving issues, while subsequent sections get into specific tips on Home safety, Mobility, Preventing falls, Freezing, Medications, Hallucinations, Weight loss, Drooling & dry mouth, and Swallowing.  Her advice is spot-on.

6. For Spouses – Unique to this section is setting boundaries.  Friends, family, even doctors and nurses may say, “Don’t worry, the wife/husband will do it,” but everyone has limits and it’s okay to express that you’re completely overwhelmed.  Also of interest is a discussion of anger and resentment, even how Parkinson’s may affect your sex life.

7. Getting Help – In addition to the usual respite and housing options, this section addresses disability benefits and how to pay for caregiving costs with web links to US, UK, Canada, and Australia government aid sources.

8. Caring for You – You can’t be there for your family if you don’t put your own self-care first.  In finding the will to make time for your own self-care  you may have to overcome personal barriers, like negative thinking, feeling selfish, or hollow promises (like, “I’ll never put you in a home.”).  Uniquely, this section includes tips on how to avoid caregiver weight gain.

9. Tough Caregiving Decisions & Issues – She saved tips on the biggest issues for last:  When is it time to take away the care keys?  Convincing someone they need in-home care. The dreaded nursing home decision.  Keeping the peace in the family.  Parkinson’s and dementia at once.  Anticipatory grief.

Caregiver Resources – US, UK, Canada, and Australia  caregiver organizations, financial resources, housing help, online caregiver resources, online forums/support groups.

Helpful Gadgets for People With Parkinson’s – grabbers & reachers, LaserCane, Medical Alert System, fall detectors, handheld massagers, big button cell phone, automatic pill reminders, and Skype.

– Denise

“Exercise Can Be a Boon to People With Parkinson’s” (NYT)

Here’s an interesting article in today’s New York Times about the value of exercise for those with Parkinson’s:


Exercise Can Be a Boon to People With Parkinson’s Disease
Personal Health
New York Times
By Jane E. Brody
Jan. 23, 2017

I don’t think there’s any solid evidence that exercise slows the progression of Parkinson’s, but of course exercise has a host of benefits – physical and mental.  The same can certainly be said for all the disorders within Brain Support Network.

If you live in Northern California, check out this list of Parkinson’s-specific exercise classes:


Many are appropriate for those with LBD, PSP, CBD, and MSA.

If you live outside Northern California or can’t leave your home, consider Parkinson’s-specific exercise videos.  You can find a list here:



Role of the microbiome in PD – webinar notes

Here are some notes I took from today’s Michael J. Fox Foundation (michaeljfox.org) webinar on the role of the microbiome (gut bacteria) in Parkinson’s.

This was not my favorite MJFF webinar.  Very few practical things came out of the presentation and question-and-answer session.  It was mostly a high level overview of the little bit of research that’s been done on this topic.

Probably the best part was the section on diet.

If you’d like more than the gist of things provided below, you can wait for the recording of the conference to be posted to the MJFF website, michaeljfox.org.  Probably next week.



Robin’s Notes from

The Michael J. Fox Foundation’s webinar
“Gut (Bacteria) Check on Parkinson’s: Role of the Microbiome”
January 19, 2017

Jeff Bronstein MD, PhD
Filip Scheperjans, MD, PhD


Presentation and Notes:

* Our intestinal tracts are home to about 100 trillion bacteria (3 lbs. worth).
* This community of microorganisms that calls us home is known as the microbiome.
* The gut microbiome plays a key role in developing and regulating our immune system.
* Gut bacteria may affect functioning of nerves in the gut, which could affect nerves of the brain.

Now talking about the “gut-brain axis.” There seems to be communication both ways.

The gut affects mood.

Does the bacteria release hormones and other chemicals that affect the brain?  Does the bacteria communicate with the neurons in the gut?

1. The gut is an entry point for environmental exposures such as pesticides.
2. Some researchers believe changes seen in the key Parkinson’s protein alpha-synuclein first happen in the gut.
3. Constipation is reported as one of the earliest Parkinson’s symptoms.
4. Slow emptying of the stomach (gastroparesis) is a Parkinson’s symptom and impacts medication absorption/effect.

Constipation is often present 4-5 years before motor symptoms.  Could even be 20 years before motor symptoms.  Why does this happen?

Jeff: No consensus that PD starts in the gut.  This might not be true for everyone.  There is evidence that there is early pathology in the gut.

Filip:  Gastroparesis is especially important in advanced PD given the link to dyskinesia.  Even in early PD, 60% of patients show signs of gastroparesis.  Gastroparesis – slowed emptying of the stomach to the small bowel.

Filip: There hasn’t been a study of the whole gut biome and its effect on PD symptoms.

* People with Parkinson’s may have less of bacteria that protect from environmental toxins and inflammation.
* Gut bacteria levels may be associated with different types of Parkinson’s symptoms, such as gait/balance difficulty.
* Bacteria in the gut may influence medication response.

Filip: Looked at stool samples to determine that those with PD are about 80% low on certain helpful bacteria.  This may affect the mucus layer of the gut which make you more susceptible to environmental toxins.  Other studies have pointed to inflammation.

Jeff: Cause and effect still not clear.  People who are constipated but not PD also have bacteria issues.

Jeff: CalTech study showed that those mice with a bad microbiome have worse motor symptoms.  This contradicts other studies on fatty acids.

Filip: Low-chain fatty acids seem to be reduced in those with PD.

We don’t know yet, but a healthy diet is never a bad idea.
» Studies are capturing data on diet to make connections to Parkinson’s disease.
» We don’t know exactly which probiotics or how much would impact Parkinson’s-associated gut bacteria.
– Probiotics: bacteria found in food and thought to provide health benefits
» A healthy diet (high fiber, low sugar and saturated fat) does alter the microbiome.
» More on how a healthy diet can help manage Parkinson’s through the link in the Resource List.

Jeff: Some movement to pre-biotics.  Good diet most important.  No evidence that probiotics on their own can help.

Filip: To treat gastroparesis, eat smaller portions, many times a day.  Avoid fatty foods.  Perhaps avoid citrus fruits (or things that raise acidity).

Jeff: One study said that people who drink a lot of milk had a higher risk of getting PD.  Perhaps this is a route for pesticides getting into body.

Jeff: Eat organic as much as you can.  Avoid the “dirty dozen” – fruits and vegetables known to have high pesticide residue.  We don’t know the effect of pesticides on the microbiome.

Filip: H. Pylori is related to inflammation of the stomach.  Some studies show this bacteria leads to a risk in PD.  We do know that h. pylori worsens the motor symptoms of PD.  This is attributed to the inflammatory process this bacteria may induce.  It may worsen gastroparesis and reduce absorption of medication.  One study showed that the reduction of this bacteria may be helpful.  Bacteria was reduced due to antibiotics use.  But did the antibiotics also destroy good bacteria?

Video on diet and exercise:

1. Slow progression of Parkinson’s disease and improve health
2. Screen for or track Parkinson’s disease
3. Learn about disease process from the role of bacteria linked to PD
4. Choose people for studies (such as for gait/balance trials)
5. Regulate gut bacteria to optimize medication response

Filip: Someone with constipation is 4 times more likely to develop PD.  We can’t identify which ones will get PD.

A:  Neither MD recommends fecal transplants.

“The Stem-Cell Revolution Is Coming – Slowly” (NYT)

Thanks to local Brain Support Network member Christine for forwarding me this interesting article in today’s New York Times about the “stem-cell revolution.”  This is an interview with scientist Shinya Yamanaka, the Nobel Prize winner for discovering induced pluripotent stem cells (iPS cells).

Here are two key excerpts from the interview:

Q:  Was the promise of stem cells overstated?
A:  In some ways, yes, it is overstated. For example, target diseases for cell therapy are limited. There are about 10: Parkinson’s, retinal and corneal diseases, heart and liver failure, diabetes and only a few more — spinal cord injury, joint disorders and some blood disorders. But maybe that’s all.

Q:  What is needed before patients can receive stem cell treatments for the 10 or so diseases you identified?
A:  Time and money. … iPS cells are only 10 years old. The research takes time. That’s what everybody needs to understand.

Here’s a link to the full article:



The Stem-Cell Revolution Is Coming — Slowly
A Conversation With
By Wallace Ravven
New York Times
Jan. 16, 2017

Here’s hoping something can be addressed by stem cells…



Notes from “Pain in Parkinson’s Disease” webinar

Though this webinar was focused on Parkinson’s Disease, nearly all of the information shared applies to those within Brain Support Network.

Last Tuesday, the Parkinson’s Disease Foundation (pdf.org) hosted a webinar on “Pain in Parkinson’s Disease.”  The speaker was Dr. Jori Fleisher, a movement disorder specialist with NYU Langone.

The slides from the talk are here:


You can view the recording — which includes the 45-minute formal presentation plus a great 20-minute Q&A — here:


You’ll have to register first.  Registration is free.

Brain Support Network super-volunteer Denise Dagan listened to the webinar and wrote up some highlights.  Of course you can find lots more details by viewing the slides or, better yet, by listening to the recording.  See Denise’s notes below.



Notes from Denise Dagan

Pain in PD
Parkinson’s Disease Foundation Webinar
January 10, 2017

Dr. Jori Fleisher spoke for 45 minutes + 20 minutes of Q&A on these points:

Pain is common, under-recognized, under-reported, detrimental and manageable as a non-motor symptom of Parkinson’s disease.  By detrimental, she meant pain can keep you from exercising, thereby worsening stiffness, contractures, and balance, potentially falling and resultant injury.

Early, asymmetric stiff or painful shoulder (hip or knee) is a common, often misdiagnosed presenting symptom of Parkinson’s disease.  Talk with your neurologist or movement disorder specialist before you get surgery.

There are four categories of pain.  More than one may be present in Parkinson’s disease.

1. Musculoskeletal pain is most prevalent (45-75% of patients) and involves muscle cramps, tightness (especially in the neck), paraspinal (on either side of the spine), or joint pain (distinct from arthritis in unilaterality & lack of inflammatory changes).

2. Dystonic pain (8-50% of patients) is caused by both sides of a limb’s muscles spasming simultaneously.  It can occur early in Parkinson’s disease, even as a presenting symptom, or as a complication of treatment, either as an early morning off-dystonia or at the peak of medication effectiveness, especially in the neck and face.

3. Radicular or Neuropathic pain (5-20% of patients)

* Radicular pain is caused by a pinched nerve due to a herniated disk in the spine which may be due to postural abnormalities or dystonia.  Physical therapy should be tried to remedy those postural changes brought about because of Parkinson’s disease.

* Peripheral Neuropathy refers to the bottoms of feet or fingertips and occurs more often than expected in Parkinson’s disease.  It is potentially related to dopaminergic therapy.

4. Central pain (10-12% of patients) is hard to describe, vague, constant, not localized to a specific nerve distribution.  It may have autonomic or visceral character in some Parkinson’s patients and present as reflux, labored breathing, or feeling flushed in the oral or general areas.

In communicating your experience of pain to your neurologist, consider using the OLD CARTS reference to be thorough.  Doctors can’t help at all if they don’t have specific information.  OLD CARTS stands for:

* Onset  (when did it start?)

* Location  (where does it hurt?)

* Duration  (how long does it last?)

* Character  (how does it feel?  Sharp, tired muscle, nauseating, etc.)

* Aggravating and alleviating factors  (exercising, resting, pain killers, next PD med dose, postural changes?)

* Radiation  (does it travel along the nerves from the point of origin?)

* Timing  (especially in relation to when you take your meds., mornings, after exercise or prolonged sitting)

* Severity  (completely pain free or child birth on a scale of 1-10)

Pain management in Parkinson’s disease requires attention to timing, quality of the pain, and relation to medication doses.  So, keep a diary of when you actually swallowed your medication and answer all the OLD CART questions in your diary with respect to your pain.  This should give your doctor enough information to determine how to help.

Multidisciplinary, customized approach to each patient’s pain should include:

– Physical therapy and exercise to improve mobility, prevent contractors, maintain range of motion.

– Pharmacotherapy tailored to the particular pain type(s).  May require adjusting Parkinson’s medications and/or adding anti-inflammatories, anti-depressants, anti-epileptics, or opiates, depending on the type and cause of pain.

– There are no proven benefit for medical marijuana or other alternative treatments (yet).  In fact, the effects of using marijuana include low blood pressure, dizziness, hallucinations, sleepiness, and confusion, which are similar to Parkinson’s symptoms and Parkinson’s medication side effects, so marijuana is not a recommended alternative therapy for any symptoms of Parkinson’s disease, including pain.

Parkinsonism still not covered as part of new federal rule on Camp Lejeune

This post will ONLY be of interest to those who have family members who were Marines stationed at Camp Lejeune in North Carolina.

I remember reading about the water contamination issue a few years ago on an MSA-related website.  People who had been diagnosed with MSA who were Marines at Camp Lejeune were hoping to receive compensation since those with Parkinson’s had received compensation.

Based on my reading of this week’s federal rule, those with MSA and other forms of parkinsonism (besides Parkinson’s Disease) are still not eligible for disability benefits.  If your reading is different, let me know!

Here’s a New York Times article on the new federal rule:


US Agrees to Pay Billions to Marines Affected by Toxic Water
New York Times
By The Associated Press
Jan. 13, 2017, 3:42 A.M. E.S.T.

And here’s a link to the new federal rule:



“Pain in PD” webinar, Tues, Jan 10th, 10am CA time

This Parkinson’s Disease Foundation (pdf.org) webinar on Tuesday January 10th may be of interest to those in Brain Support Network who are coping with pain.  The slides for the webinar are already posted to the PDF website.  If you are interested in the webinar but cannot attend live, I encourage you to sign up.  Within a few days of the webinar, you will receive an email giving you a link to the recording.

Details are below.


Parkinson’s Disease Foundation (PDF) Webinar

Pain in PD
Tuesday, January 10, 2017
Start time:  10am California time
Duration:  One hour

Do you experience pain as part of your Parkinson’s disease (PD)? Are you looking for ways to better manage it? Learn more by joining a one-hour online seminar led by PDF and Jori E. Fleisher, M.D., M.S.C.E., Assistant Professor of Neurology and Population Health, The Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone.

Learning Objectives:
* Understand how common pain is in Parkinson’s disease
* Be able to identify and describe the different types of pain commonly experienced in Parkinson’s
* Learn about current treatments for pain in PD, including both pharmacological and non-pharmacological options

Sign Up Now:

Preview Seminar Slides (may take several minutes):

Expert Physical Therapist – Fall Prevention, etc. (Highlights of 48-min Video)

This email is of general interest to those in our Brain Support Network.

Though this talk by a physical therapist was delivered at a CurePSP family conference in Canada (mostly PSP and CBD families in the audience), all of the disorders in our BSN group will find value in this talk.

The speaker is Joellyn Fox, DPT, a movement disorder specialist physical therapist at the University of Pennsylvania.  Her focus is offering practical tips to preventing falls and keeping moving to “improve everyday life.”

You can find the December 2015 talk by Joellyn Fox, DPT, on YouTube here:  (48 minutes)


BSN volunteer extraordinaire Denise Dagan recently watched the video and wrote down a few highlights, which are below.  Denise encourages everyone to watch the video, however!



Methods to Improve Everyday Life
By Joellyn Fox, DPT, University of Pennsylvania
CurePSP Family Conference, Canada
December 4, 2015
48 minutes

Highlights by Brain Support Network volunteer Denise Dagan

Ms. Fox prefers to begin working with people the moment they realize there has been a change in their movement.  She calls this ‘prehabilitation.’  Clever, but her point is that until there’s a problem we don’t think about how we move.  Once there is a problem, she believes it is best to start motor learning and conscious movement training right away to prevent loss of balance and falls.

With Parkinson’s disease and parkinsonisms there develops a motor-sensory disconnect.  To compensate for that, one needs to:
– Think before moving
– Move with larger movements
– Finish one part of a task before moving on to the next by breaking tasks into parts.

For example; sitting requires approaching a chair, turning, and lowering oneself onto the seat.  When each part is done with thought, the risk of falling, sitting on the arm, or dropping onto the seat is minimized.

People with Parkinson’s often feel as if their ability to move has been lost, particularly when they suffer from freezing.  In actuality, it is a problem of activating the motion due to motor-sensory disconnect.  Compensating for this is primarily done through the use of cues to activate movement and improve gait quality.

Cueing the activation of movement can be internal (mental reminders, imagination) or external (verbal, visual or audible reminders, signs around the house, etc.).  Examples include:

– tape on the floor: to line up in front of a chair or bed before sitting, to step over going through doorways, etc.

– laser lines: light is emitted from the bottom of a cane (e.g. UStep laser cane) to break freezing and increase stride

– metronomes: help overcome freezing and maintain a regular pace or prevent slowing of stride.

Free apps are available for smartphones, even blue tooth so others can’t hear them.

– imagination: pretending to step over or on something that isn’t there (like step on a bug or over a threshold).

– tactile stimulation: tapping on the foot that’s frozen can often get it moving, or tapping on the side that needs to take the next step.

– RAS (Rhythmic Auditory Stimulation): People tend to step in time with music, whether they have Parkinson’s disease, or not.

Ms. Fox’s FOG (Freezing of Gait) Strategies start with the 4 S’s:
– Stop
– Stand tall
– Shift weight
– Step big

The key is to unweight one foot and make the next step a big one.  The cue in a physical therapy appointment is her saying, “Stop,” but remembering to say it to yourself is an internal cue, which doesn’t work for most people.  A solution at home can be STOP signs around the house where freezing often occurs (an external cue).

The rest of her FOG Strategies include:

For areas in the home (doorways, around furniture, etc.)
– Destination Estimation: estimate the number of steps to a destination and try to keep to just that many.  Works well for elevators because there is some anxiety over beating the door close.  Estimate 4 steps, take them big, and you’re in!
– Look through a doorway to the wall ahead.
– Stop, and step big over the threshold

For crowds (elevators, escalators, church, concerts, trains & buses)
– Allow others to go ahead of you to blaze a trail, and follow in their wake
– Move to the side of the crowd or against a wall and follow around the edge of the group

Turns require learning new techniques because you’re probably used to leading with your shoulders, but that causes legs to cross and may result in falling.  Instead, Ms. Fox offers specific techniques for maintaining balance while turning in both open areas and tight spaces.

Ms. Fox also spoke about retropulsion, backward balance loss with reduced step size and increased cadence, and festination, forward gait with increased step cadence, a.k.a. “runaway train.’  She listed several specific triggers and preventions for both.

Ms. Fox made the point that moving doesn’t have to be boring or tedious, even during your physical therapy appointment.  You want a therapist with that same attitude.  Her last slide has several research based movement options shown to benefit people with Parkinson’s disease.  Pick some and keep moving!

Lastly, Ms. Fox offers some specific tips for caregivers to to help steady someone with Parkinson’s disease while walking together, as well as minimize quarrels about nagging over posture or gait.

To find a physical therapist close to you, start with these resources:

– Look for therapists with experience working w/people who have Parkinson’s disease & parkinsonisms

– National Parkinson Foundation : Centers of Excellence

– LSVT BIG Certification (Lee Silverman Voice Treatment, limb movement training)

– Parkinson’s Wellness and Recovery