Blood Test to ID Who Has PD vs. PSP/CBD/MSA

Thanks to Brain Support Network volunteer Denise Dagan for passing this article in MedPage Today on to me.  This is progress on the way to a biomarker to discern if someone has Parkinson’s Disease (PD) vs. one of three atypical parkinsonism disorders — progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA).  Of course what we really need are biomarkers for each of the disorders — PD, PSP, CBD, and MSA.  But still, it’s progress.

The article is about a Swedish/UK study (published in the journal Neurology on February 8th) that shows that neurofilament light chain (NF-L) protein levels are increased in PSP, CBD, and MSA as compared to those with PD or healthy controls.   This was true for those recently diagnosed as well as those with had been living with PD, PSP, CBD, and MSA for several years.  (This also means that the blood test is not a biomarker for determining if someone has PD.)

And researchers determined that a blood test for the NF-L protein achieves the same results as a spinal test for this protein does.  Obviously it’s much easier to administer a blood test than a spinal tap.

In an accompanying editorial, authors pointed out that there is a need for autopsy confirmation of the PD vs. atypical parkinsonism diagnoses.

Here are two excerpts from the article:

* “These atypical parkinsonism disorders are rare, but they generally progress much faster and are more likely to be the cause of death than Parkinson’s disease,” [one of the researchers] said. “It’s important for patients and their families to receive the best care possible and to plan for their future needs.”

* “Distinguishing these major parkinsonian groups is crucial for best possible treatment and care, and not least for providing adequate information to patients and caregivers on their future needs and perspectives,” the editorialists pointed out. “When disease-modifying treatments become available, diagnosing parkinsonian disorders correctly at early, possibly preclinical stages will be even more important.”

Here’s a link to the full article:

Blood Test Matches Spinal Tap to ID Parkinson Disease Types
Less painful diagnostic workup could help diagnosis
by Kristin Jenkins
Contributing Writer, MedPage Today
February 08, 2017



“The PSP Chronicles” – blog by man in UK with PSP

A man in the UK, diagnosed with PSP and dementia, started a blog called “The PSP Chronicles” in October 2016.  Though described as a “daily journal,” there are once-a-month posts that describe all the events in this man’s life in the preceding month.  It’s a little tedious for my tastes but your mileage may vary.

The title information at the top of each blog post indicates the man has been diagnosed with PSP and frontotemporal dementia (FTD).

Here’s a link to the January 2017 “PSP Chronicles”:


“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 ( 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


Compassionate communication and managing difficult behaviors

Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association “Circle of Care” conference in Foster City.  Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias.  He also had the opportunity to attend a few of the break-out sessions.  Copied below are his notes from the break-out session on “Managing difficult behaviors.”

During the break-out session, a handout on “Compassionate Communication” was reviewed.  The handout offers “do’s” and “don’ts” of communicating with someone with memory impairment.  You can find my previous post from 2008 about this terrific handout:

Two key lines from the “Compassionate Communication” handout are:

“You can’t control memory loss, only your reaction to it.   Compassionate communication will significantly heighten quality of life.”

Words to live by as caregivers!



Steven’s Notes

Managing Difficult Behaviors
Session led by:  Alexandra Morris, Alzheimer’s Association
Circle of Care Conference, December 2016

Ms. Morris spent a good deal of time describing some typical dementia behaviors, why they occur and how to change or redirect these behaviors.

Ms. Morris reminded all of us that dementia behaviors are not deliberate. The care recipient has a disease and is exerting all of his or her energy to do the best they can with their disease.  Expending so much effort when trying to communicate and have the care recipient’s needs met can lead to “sundowning” at the end of the day.

Additional dementia behaviors can include repetitive questions, hiding/hoarding objects, delusions and hallucinations, suspicion, wandering and hitting. Besides exhaustion what leads to these behaviors? Here are some ideas.

The care recipient is a person who

– is an adult and doesn’t like being disrespected or under someone’s control

– is trying to get his or her needs met

– needs connection and purpose

– lacks insight into his or her condition

– is doing the best he or she can to deal with the cognitive challenges being experienced

– is  suffering from delusions or anxiety

– is irritated at something the caregiver said or did.

Ms. Morris gave us several tips to dealing with behaviors:

– Kindness versus Truth – “white lies” are better than anger, hurt or causing fear

– Appeal to the care recipient’s motivation (this may require practice to carry off successfully)

– Always say “yes” to a request.  If the outcome could endanger the care recipient, redirect to something safer as soon as possible.

– Don’t try to reason with or over-explain something to the care recipient

– If communication gets stuck, stop. Try physical movement to get unstuck (touch, gently direct the person towards where thy need to go).

– Tell a story – “I wondered about that…” “I’ll have to look into that…”

Probably one of the most difficult challenges happens when the care partner knows that a topic will agitate the person. Here are some tips:

– Determine if the conversation must be raised at all

– Interject with ” I have a question…”

– Change location

– Appeal to the person’s emotions, not the topic itself

– Use humor to defuse a charged situation

– Tell a “therapeutic fib” that helps move the conversation along without frightening the care recipient.

Every behavior has a purpose. You may have to put on your detective hat to determine what the purpose is.

– Let the issue go (“So what?”)

– Alter the situation to make it acceptable

– Keep responses and behavior slow, simple and calming

– Re-frame the issue/redirect to a more comfortable place

– Beg forgiveness rather than ask permission

Ms. Morris reminded the audience that as a care partner you can’t control memory loss, only your reaction to it. Remember that the care recipient’s disability is memory loss. Testing memory, lecturing the care recipient on their inability to find words or express appropriate emotions leads to suffering for all involved.  Instead refer only to the future (when the person with dementia mentions they want food, instead of saying “You ate an hour ago” say ” Why don’t I fix something for you in a bit?”).  Don’t use open-ended questions or try to initiate multi-step processes. Give the care recipient a simple choice between two items or direct their choice -“you look great in the green shirt.”

Finally, Ms Morris mentioned that the goal is to make life more calm and enjoyable for both you as care partner and for the care recipient. As you reassure the person remember that the care recipient cannot remember this reassurance. You’ll need to remind him or her each time.

“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



Care partner communication at all stages of dementia – workshop notes

Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association ( “Circle of Care” conference in Foster City.  Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias.  He also had the opportunity to attend a few of the break-out sessions.  Here are his notes from the break-out session on “Care partner communication at all stages of dementia.”



Steven’s Notes

Care Partner Communication at all Stages of Dementia
Session by:  Alexandra Morris, Alzheimer’s Association
Alzheimer’s Association Circle of Care
December 2016


In early stages, where the diagnosis may be mild cognitive impairment, the person may be able to adequately express his/her thoughts, participate in and make decisions about future care but may also misinterpret what others say. People at this stage will have difficulty finding words, participating in/following conversations and struggle with decision-making or problem solving.  The care partner can connect with care recipient at this stage by using clear and straightforward sentences, leaving extra time for conversations (particularly responses), etc. Care partners should be especially careful to include the person in any conversation…related to future care decisions. Communicate in a manner that works best for the person (email, in-person, phone) and speak directly to him/her.


In mid-stage disease, language is reduced to basic words and sentences. The person receiving care is more likely to rely on tone of voice, facial expressions and body language to make a connection. At this stage, activities meaningful to the person with dementia are key to maintaining an emotional connection. Clues about cognitive changes include losing words (nouns go first), increasing trouble finding the right word and losing the train of thought or the thread of a conversation. Communication comes more through behaviors than words. Care partners can help by approaching from the front, saying who they are while calling the person receiving care by name. Care partners should move their level to match that of the care recipient, pay attention to tone of voice and take more time to let the conversation flow. Short sentences and basic words are best (one question at a time) and distractions should be limited. It is especially important to normalize experiences (for instance, if the care recipient is afraid, explain what is happening and show that you are not afraid).

Also at this stage, caregivers should join the care recipient’s reality. Keep respect and empathy in mind as you try to give the person multiple cues to help make and maintain a connection. Modeling behavior, keeping gestures fluid and overt (never sudden or coming from the side) repeating as necessary, avoiding “quizzing” about a topic and turning negatives into positives are great tools to help build trust. Writing things down, pointing them out or using photographs or pictures to convey meaning are also very helpful. One cue Ms. Morris mentioned is putting answers into your questions — “Would you like to wear the red shirt today?”  As verbal communication begins to decline, try and asses the care recipient’s needs (pain, bathroom, hunger, temperature, fear, boredom). People with dementia only receive half the pain medication needed compared to functional adults. In addition people with dementia are almost never treated for breakthrough pain (the person with dementia struggles to express this need so the care partner will need to always be alert to checking pain levels and advocating for patient comfort. Let the person with dementia know you hear his/her concern whether through words, behavior or both.


In late-stage disease, the care recipient uses body language and his or her five senses to make a connection. The person may still respond to familiar words, phrases, smells or songs. Pain is often chronic at this stage . If the care recipient is agitated, always check first for pain, then bathroom, food, temperature, etc. The care partner should reply in a similar manner using all five senses to make a connection:

Touch – feel different fabrics, identify shapes by touch, give lotion hand massages, identify items in a bag by touch, visit animals, sculpt, hold the person’s hand;

Sight – brightly colored pictures to look at together, photo albums, paint with watercolors, go bird watching, sit at an open window;

Sound – particularly music (and personally meaningful music-the movie Alive Inside shows this very movingly), traditional or native language music, poems, whistling, singing and humming are all helpful;

Smell – baking (cookies are always great), aromatherapy with essential oils, flowers, grass clippings, fragrant lotions for hand massages;

Taste – favorite foods, popsicles, flavored drinks, ice cream.

At all stages of disease the care partner needs to understand and accept what can’t be changed. The person receiving care retains a sense of self, despite the many losses caused by dementia. You are visiting their world — join them there to make a connection. Always treat the person as an adult, worthy of respect and empathy. Try and decode what need the person is trying to express and help meet that need with soothing and calming words and actions. Recognize the effects of our moods and actions on the person receiving our care.

“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:


“Last Dance at the Savoy” – memoir by a caregiver

Recently I asked if Brain Support Network super-volunteer Denise Dagan could read the memoir Last Dance at the Savoy, by actress Kathryn Leigh Scott (  I was honored to meet Kathryn last year at a progressive supranuclear palsy (PSP) conference in the local area.  Her husband had PSP.

Below, Denise shares her review of the book and some highlights.  The symptoms and behaviors mentioned below are found in most of the disorders in Brain Support Network.



Denise’s review of
“Last Dance at the Savoy”
by Kathryn Leigh Scott

Robin asked me to review this memoir.  The diagnosis is PSP, but it is about caring for the love of your life until the very end.

Kathryn says she wrote this book because, when her husband was diagnosed with PSP she, “…yearned for someone to take my hand and figuratively walk me through the difficult times I knew were ahead.”  She’s done that for you in spades by beautifully sharing her own story!  She’s also included a good resource guide.

Kathryn is a good writer.  She spends the first several chapters introducing herself and her 2nd husband, Geoff.  She doesn’t just run through the history of how they met and their respective professions, but invites you to witness romantic moments, annual jazz pilgrimages, favorite haunts and travel destinations.  You are right there with them through everything.  Every experience is conveyed with thoughtfulness, honesty, and humor.

By the time she gets into the nuts and bolts of caring for Geoff you understand their devotion to friends, loved ones, and each other.  You understand her motivation to join in his denial, protect him from the injury of falls, and support his remaining life.  You understand their great desire to push through the difficult bits and continue enjoying all that their respective, amazing, lives have to offer.

Since it is a memoir, and not a caregiving guide, there’s little in the way of tips and tricks for helping someone with PSP (his diagnosis, after many exams), although as she describes how she manages, you pick up on what works and what doesn’t.

Most useful to caregivers of any long-term illness is her frank recollection of her thoughts and feelings, how she dealt with the stress of caregiving, complicated by trying to be available for her husband, her family, and her career.  She is not shy about sharing her mistakes and correcting them, nor her guilt over injuries he suffered because of those mistakes.  At the same time she reprimands herself for not always carrying a book in her bag for those long hours in the ER after his falls.

It took some struggle on both their parts for Geoff to accept each new dependence on Kathryn, even though he had cared for his first wife, Barbara, through 12 years of Multiple Sclerosis until her death.  It’s not the same when you’re the one being cared for and he had no control over emotional outbursts because of the disease process.  And they didn’t know PSP itself was a factor in those outbursts for a few years.

When Kathryn was frustrated with her mother’s behavior in the last weeks of cancer, Geoff recognized her mother’s behavior as separating from the family and the world in preparation for death.  He had seen the same in Barbara and shared that with Kathryn to ease the strain between her and her mother.  She remembered this when he was in hospice and his advice about her mother, “This is her journey.  Just be there for her.”  As difficult as it was, she was there for her mother, and for Geoff.

Kathryn takes us with her through the funeral arrangements and some months after.  She shares with us not only her grief, but the support of friends and family, and a bit of how she moved on.  In a quiet moment she realized that she was not only going to need to learn to live without Geoff, she would need to redefine her life.  She would find his presence in unexpected places, and make peace with that.

– Denise


Anosognosia (lack of awareness) in dementia

Someone on a frontotemporal dementia online support group recently suggested this “Senior Living Blog” post on anosognosia, which is a lack of awareness of impairment.  Though this post is focused on Alzheimer’s Disease, I believe it can affect those with non-AD dementias as well, such as LBD, PSP, and CBD.

Obviously if the family member has anosognosia, this is a difficult situation for the caregiver who wants to provide care and work with physicians to provide treatment.  Of course many of us think that our family member must be in a state of denial, when it’s really anosognosia.  Sarah Stevenson, the author of the “Senior Living Blog” post, addresses all of these issues.

Ms. Stevenson wisely draws on an AlzOnline article about anosognosia; it’s one of the best articles I’ve read.  See this email from 2009:

Ms. Stevenson also offers this suggestion:  Try reading “I Am Not Sick. I Don’t Need Help!” by psychologist Xavier Amador, a professor at Columbia University.  This book “provides practical recommendations for those who lack insight into their mental illnesses.”

Here’s a link to the post:

Senior Living Blog
Anosognosia and Alzheimer’s
A Place for Mom
By: Sarah Stevenson
Posted On 22 Mar 2016

Good luck!



NORD study welcomes those with rare diseases to participate

Oregon State University is teaming up with the National Organization for Rare Disorders (NORD, in conducting a large-scale study about the “information and psychosocial support needs of people living with rare disorders.”  Only those with a rare disorder or undiagnosed rare condition may participate in this 40-minute online survey.  Caregivers are not eligible to participate at this time.

Within Brain Support Network, these three diagnoses are considered rare:

  • PSP (progressive supranuclear palsy)
  • MSA (multiple system atrophy)
  • CBD (corticobasal degeneration)

Of course, LBD (Lewy body dementia) is NOT a rare disorder.

If you are interested in participating, check out:

At the bottom of that webpage, click on the NEXT button to view the consent form and proceed to the study.