Stanford/BSN Webinar – Diagnosing PSP, Wed, Aug 30, 2-3pm PT – Register Now!

Brain Support Network is kicking off a webinar series with Stanford Movement Disorders Center, one of our Northern California partners.

Join us for a free, one-hour webinar on diagnosing progressive supranuclear palsy (PSP). The speaker is Stanford movement disorders specialist Kathleen Poston, MD. Please spread the word!

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Diagnosing Progressive Supranuclear Palsy

When: Wednesday, Aug 30, 2017
2-3pm Pacific Time (US and Canada)

Speaker: Kathleen Poston, MD, MS, movement disorders specialist, Stanford Movement Disorders Center

Register in advance for this webinar:

https://stanford.zoom.us/webinar/register/d19798267307ba908c34be5db4a05ad8

After registering, you will receive a confirmation email containing information about joining the webinar.

Note: If you can’t make it on August 30th, we encourage you to register for the webinar so that you will be alerted when the recording is available online.

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Further details on the webinar topic:

Dr. Kathleen Poston, a movement disorder specialist with extensive experience with PSP, will address these topics:

* how is PSP diagnosed?
* how many years does the average person wait for a diagnosis?
* what are the two main types of PSP?
* what’s the new diagnostic criteria for probable PSP?
* what’s the accuracy of a PSP diagnosis?

There will be time for audience questions on PSP.

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Further details on the speaker:

The speaker is Dr. Kathleen Poston, a movement disorders specialist at Stanford University. Dr. Poston research focuses on the development of novel neuroimaging biomarkers to improve diagnostic accuracy and monitor the efficacy of investigational treatments for Parkinson’s Disease and other movement disorders, such as PSP. She is the co-investigator for the NINDS-funded Udall Center of Excellence for Parkinson’s Disease Research.

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Further details on the webinar host:

The webinar will be hosted by Robin Riddle, who coordinates a Parkinson’s Information & Referral Center at Stanford. She is also the CEO of Brain Support Network, a nonprofit focusing on the four atypical parkinsonism disorders, including PSP.

Brain Support Network is organizing a research update and family conference on Progressive Supranuclear Palsy and Corticobasal Degeneration on Saturday, October 28th, in the San Francisco Bay Area. To be notified when registration opens for this conference, please join the PSP email list.

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Register in advance for this webinar:

https://stanford.zoom.us/webinar/register/d19798267307ba908c34be5db4a05ad8

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Questions? Please contact Robin Riddle.

BSN’s Allan Marcus Fund Gave Six Grants in 2017

The Allan Marcus Fund for Families in Need with PSP has successfully completed its giving for 2017.  The Marcus family and Brain Support Network (BSN) approved six grants to families with loved ones with progressive supranuclear palsy (PSP).

The grants to PSP families provided in-home caregiving, travel to family reunions, needed physical therapy, and more.  Congratulations to all the families in the US who received grants.  It was an honor to hear your stories and help make what we hope will be precious memories.

The Marcus family aims to provide this fund annually.  Please join BSN’s PSP email list to be kept informed as more information is available in the new year.

PSP and CBS excerpts from curriculum on dementia for healthcare professionals

Someone in our local support group recently sent me this link to US Dept. of Health and Human Services’s curriculum for physicians (especially primary care physicians) and healthcare professionals (social workers, psychologists, pharmacists, emergency department staffs, dentists, etc.) on dementia. Though the web address includes the term “Alzheimer’s,” frontotemporal dementia is also mentioned in this curriculum:

Training Curriculum: Alzheimer’s Disease and Related Dementias
Health Resources and Services Administration (part of Dept of HHS)
bhw.hrsa.gov/grants/geriatrics/alzheimers-curriculum

One of the types of frontotemporal dementia is the “motor type,” which include corticobasal syndrome and progressive supranuclear palsy.

Here are some excerpts on frontotemporal dementia.

Robin

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Overview of Mild Cognitive Impairment and Dementia for an Interprofessional Team (Module 1)

Frontotemporal Dementia Types
* There are at least 3 distinctive clinical syndromes, each with heterogeneous neuropathology.
– Progressive behavior/personality decline: behavioral variant FTD (bvFTD)
– Progressive language decline: Primary progressive aphasia (PPA)
– Progressive motor decline: corticobasal syndrome, amyotrophic lateral sclerosis, or [progressive] supranuclear palsy. FTD with progressive motor decline is rare. FTD with progressive motor decline can involve movement problems/slowed movement, muscle rigidity (Parkinsonian symptoms), body stiffness, and changes in behavior or language.
* Behavioral variant FTD (bvFTD) is the most common variant. It is characterized by marked personality changes and changes in social conduct.


Understanding Early-Stage Dementia for an Interprofessional Team (Module 5)

Early-Stage Frontotemporal Degeneration (FTD): Overview
* FTD is a heterogeneous group of diseases with overlapping clinical symptoms but different causative genes and differing underlying pathologies.
* FTD is caused by damage to frontal and/or temporal lobes. Impairments generally progress quickly but memory often remains intact.
* Persons with FTD demonstrate changes in behavior and personality, language problems, and motor problems.
( Memory impairment is minimal in early stages.


Palliative and End-of-Life Care for Persons Living with Dementia (Module 12)

When to Consider Hospice Care in Persons with End-Stage FTD
* Persons with end-stage FTD are generally younger and healthier than persons with other types of end-stage dementia.
* As with other dementias, FTD is often not recognized as a terminal diagnosis.
* End-stage FTD may “look different” than other advanced dementias.

 

Apathy – description and treatment

Brain Support Network volunteer Denise Dagan came across this article in a recent Parkinson’s Disease (PD) organization’s newsletter about apathy in PD.  Certainly apathy occurs in many of the disorders in the Brain Support Network community as well — especially progressive supranuclear palsy (PSP).  That’s why I’m sharing the article within our network.

These statements in the article caught Denise’s eye:

“Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. … It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.”

The author of the article is Rosa Chuang, MD.  She may be familiar to some in our multiple system atrophy (MSA) group.  She used to practice at Stanford but is now in Seattle.

The article is copied below.

Robin

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www.apdaparkinson.org/community/northwest/about/newsletters/

Apathy in Parkinson’s Disease
Parkinson’s Pathfinder (Newsletter by APDA Northwest)
Summer 2017
By Dr. Rosalind Chuang

Apathy is a common non-motor symptom of Parkinson’s disease but often times not recognized or commonly mistaken for depression. Some studies show that 30-40% of PD patients have apathy, but the frequency can range from 20-70%, depending on how patients are asked. It can occur at any stage of PD and can even occur before motor symptoms develop. It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.

WHAT IS APATHY?

Apathy is defined as:
• Loss of motivation or lack of initiative
• Loss of pleasure
• Decreased goal directed behaviors
• Decreased goal directed cognitive activity
• Decreased interests and emotions (reduced display of emotions)

WHAT TO LOOK FOR IF YOU ARE CONCERNED ABOUT APATHY

A common complaint from family and friends is that the PD patient just “sits around” or “doesn’t seem to care about anything.” Nothing gets done and a person often declines social activities if given a choice. This can be misinterpreted as fatigue, laziness, or lack of empathy/ uncaring.

Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. Medical providers may ask specific questions from the Starkstein apathy scale to determine apathy. Some questions on the scale include:

• Any interest in learning new things?
• Does anything interest you?
• Do you look for things to do?
• Are you concerned about your condition? Or unconcerned about many things?
• Does someone have to tell you what to do each day? Do you need a push to get started on things?
• Are you neither happy nor sad, just in between?

As you can see, these questions are similar to those to assess for depression, so sometimes it can be difficult to separate apathy from depression. Often times, patients can have both depression and apathy, but in ~10- 28% of time, patients can have apathy alone.

WHY IS IT NOT DEPRESSION?

In both depression and apathy, a person may no longer enjoy things. However, someone with depression may endorse feeling “blue” or sad. Other “negative” symptoms of depression include inappropriate guilt, loss of appetite, loss of sleep, or thoughts of death. An apathetic person does not cry frequently or have suicidal thoughts.

TREATMENT

It is important to evaluate if the symptoms are from apathy alone because it can affect treatment. If apathy is associated with depression or anxiety, treatment of co-morbid conditions can help reduce apathy. Sometimes isolated apathy can also respond to the SSRIs used to treat depression, but generally studies don’t show good response. Dopamine medications (levodopa or dopamine agonists) may also improve apathy. (In some patient who have undergone deep brain stimulation for PD, rapid withdrawal of their PD medications resulted in apathy.) In one trial, PD apathy responded to rivastigmine, a medication used for dementia, even though the patients did not actually have dementia.

For isolated apathy, I generally recommend non-pharmacologic treatment. These include:

• Write down at least 3 daily goals and 3 weekly goals. These goals can be physical, social, or thinking activities.
• Daily goals should be specific and can be reasonably achieved.
• Create a schedule: be specific when each task will should be accomplished.
• Review the written list at breakfast, lunch and dinner to remind yourself of the next goal.
• Cross off each task as you complete them.
• Say “yes” to at least one thing every day even if you don’t feel like it.
• Maintain routine: continue to do things you used to do, even if you don’t feel like it.
• Recall an activity that you used to enjoy and try to restart that activity.
• Exercise even if you don’t feel like it.
• Must leave the house at least once a day

Even though apathy is not as easily treated as the motor symptoms of PD or other non-motor symptoms such as depression, simply recognizing and understanding apathy is an important part of overall management of Parkinson’s disease.

Save the Date! Saturday, October 28, PSP/CBD Research Update and Family Conference

Save the date!

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)

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.

BSN’s 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!

The conference will be run from 9am to 5pm. The morning will feature international researchers in town for a major conference on PSP, CBD, and tau. The afternoon will feature Bay Area clinicians (from UCSF and Stanford), healthcare professionals, and families.

We anticipate registration will open in early September. Join our PSP or CBD email lists and we’ll send you an update when registration opens. Alternatively, check back at our website in September to register. Our meeting facilities are planned to accommodate 150 participants.

Stay tuned for more details!

Robin

 

Inheritability of PSP

This is an interesting, short question-and-answer on the Genetic and Rare Diseases Information Center (part of NIH) about the inheritability of progressive supranuclear palsy (PSP), from September 2012.

Robin

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rarediseases.info.nih.gov/diseases/7471/progressive-supranuclear-palsy/cases/36421

Progressive supranuclear palsy
Genetics and Rare Diseases Information Center (part of NIH)
Last updated 9/12/2012

Question: My identical twin sister has been diagnosed with progressive supranuclear palsy (PSP). As it seems this disease may have a genetic cause, what is the chance that I would also develop PSP? And within what timeframe?

 

Answer: The following information may help to address your question:

What is the chance of developing progressive supranuclear palsy if a relative is affected?

Researchers do not yet completely understand the causes of progressive supranuclear palsy (PSP), so it is not possible to predict the chance of a relative developing the condition if one family member has been diagnosed. Most of the time, only one person in a family develops PSP. It is not very common to have multiple members of a family develop PSP. One study found that 7% of individuals with PSP had a family history of potentially related conditions (including dementia or parkinsonism), which suggests there may be a shared genetic risk factor.[1][2]

A few genetic risk factors (particularly a gene called MAPT) are known to play a role in the development of PSP.[3][4] However, these genetic risk factors have only been found in a few families. Researchers suspect that there are other genetic factors that haven’t been found yet that also contribute to progressive supranuclear palsy.

 

If a family member has a known genetic risk factor for progressive supranuclear palsy, what is the chance a relative has inherited it?

Close relatives such as parents, siblings, and children of an affected individual have a greater chance of sharing a genetic predisposition than do aunts, uncles, grandparents or cousins. Identical twins share their entire DNA, so they should have the same genetic risk factors.

 

If an individual inherited a known risk factor, what is the chance of developing progressive supranuclear palsy?

Having a genetic risk factor increases the chance of developing progressive supranuclear palsy (PSP); it does not guarantee that an individual will develop this disease at some point in their lifetime. The exact risk of developing PSP in an individual with a genetic predisposition is currently unknown.[5]

 

What is the average age at diagnosis for progressive supranuclear palsy?

Individuals with progressive supranuclear palsy usually experience the first symptoms of this disease while in their 60s.[1]

 

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

Warm regards,
GARD Information Specialist

 

References
1. Progressive supranuclear palsy. Genetics Home Reference. March 2011; http://ghr.nlm.nih.gov/condition/progressive-supranuclear-palsy. Accessed 9/7/2012.

2. Donker Kaat L, Boon AJ, Azmani A, Kamphorst W, Breteler MM, Anar B, Heutink P, van Swieten JC. Familial aggregation of parkinsonism in progressive supranuclear palsy. Neurology. 2009; 73:98-105. http://www.ncbi.nlm.nih.gov/pubmed/19458322. Accessed 9/12/2012.

3. Rojo A, Pernaute RS, Fontán A, Ruíz PG, Honnorat J, Lynch T, Chin S, Gonzalo I, Rábano A, Martínez A, Daniel S, Pramstaller P, Morris H, Wood N, Lees A, Tabernero C, Nyggard T, Jackson AC, Hanson A, de Yébenes JG. Clinical genetics of familial progressive supranuclear palsy. Brain. 1999; 122:1233-1245. http://www.ncbi.nlm.nih.gov/pubmed/10388790. Accessed 9/6/2012.

4. Dickson DW, Rademakers R, Hutton ML. Progressive supranuclear palsy: pathology and genetics. Brain Pathology. 2007; 17:74-82. http://www.ncbi.nlm.nih.gov/pubmed/17493041. Accessed 9/6/2012.

5. Litvan I. Update on epidemiological aspects of progressive supranuclear palsy. Movement Disorders. 2003; 18:S43-S50. http://www.ncbi.nlm.nih.gov/pubmed/14502655. Accessed 9/6/2012.

 

“Square patches of light remember you” – reflections on grandmother with PSP

This beautiful remembrance, “Square patches of light remember you,” was published in the June 13, 2017 issue of Neurology journal.  These reflections are by Bronte Nicole Ficek, whose grandmother Lola had progressive supranuclear palsy (PSP).  See:

www.neurology.org/content/88/24/2333.full

“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:

www.lewybodydementia.ca/dementia-care-facility-choice-avoid-mistakes/

How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016

Robin

 

July 2017 Parkinson’s Support Group Meetings – 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 July 2017.

With my Brain Support Network atypical parkinsonism (DLB, PSP, MSA, CBD) 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:

* Lodi, Monday, 7/3: a neurologist is speaking on Parkinson’s and essential tremor. I know nothing about this neurologist but it seems to be a unique opportunity to hear a neurologist speak in Lodi.

* Soquel, Wednesday, 7/5: physical therapist addresses practical solutions to daily challenges

* Yuba City, Monday, 7/10: social worker talks about the importance of sleep for caregivers. Hopefully everyone in this area knows about the Del Oro Caregiver Resource Center. If not, please attend the talk just to learn about their services.

* Bakersfield, Tuesday, 7/11: fitness instructor demonstrating exercises and yoga

* Turlock, Wednesday, 7/12: social worker describes coping skills for dealing with Parkinson’s (for both those with a diagnosis and caregivers). Certainly many of these coping skills will be applicable to those in Brain Support Network.

* Palo Alto/Avenidas, Wednesday, 7/12: a palliative care social worker and hospice nurse will be addressing palliative care and hospice at home for those with neurological disorders (not just Parkinson’s). Many in the Brain Support Network group apply for palliative care. Come learn about what this is!

* Walnut Creek, Saturday, 7/15: movement disorder specialist Salima Brillman, MD, will be talking about the diagnosis and treatment of Parkinson’s. She is very familiar with the disorders in our group.

* Sacramento/Arden Arcade, Thursday, 7/20: an excellent physical therapist addresses physical therapy for PD. She may be familiar with the disorders in our group.

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:

parkinsons.stanford.edu/support_groups.html

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

Robin
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Lodi
Monday, 7/3, 10-11am
Guest Speaker: Mohammad Kazmi, MD, neurologist, Lodi
Memorial Hospital, Lodi
Topic: Parkinson’s Disease and Essential Tremor
RSVP?: No.

 

Soquel (Santa Cruz County)
Wednesday, 7/5, 1-2:30pm
Guest Speaker: Ruby Straehley, PT, physical therapist
Topic: Practical solutions to everyday challenges facing those with Parkinson’s
RSVP?: No.

 

Yuba City (Tri-Counties)
Monday, 7/10, 1-2pm
Guest Speaker: Dorene Fanning, LCSW, family consultant, Del Oro
Caregiver Resource Center
Topic: Insights into challenges and the importance of sleep for caregivers
RSVP?: No.

 

Bakersfield
Tuesday, 7/11, 2-4pm
Guest Speaker: Deb McCormack, Bakersfield Mind & Body Studio
Topic: Exercises and yoga for PD
RSVP?: Yes to group leaders Linda Feist, 661-304-9227, or Bill
Burgemaster, 661-343-2707

 

Pacific Grove (Monterey County)
Tuesday, 7/11, 3-4:30pm
Program: Discussion groups – people with Parkinson’s and care partners
RSVP?: No.

 

Davis – regular and caregivers groups together
Wednesday, 7/12, 12:45-2:15pm (special day/time for July)
Guest Speaker: Marg Bartosek
Topic: Experiential presentation of Feldenkrais awareness through movement
RSVP?: No.

 

Turlock
Wednesday, 7/12, 1-2pm
Guest Speaker: Nancy Neufled Silva, PhD, LCSW, counselor, Turlock
Topic: Coping skills in dealing with PD for patients and caregivers
RSVP?: No.

 

Palo Alto/Avenidas
Wednesday, 7/12, 2-3:30pm
Guest Speakers: Libby Hagman, RN, clinical outreach coordinator, and Anthony Lupian, MSW, Transitions program coordinator, Mission Hospice and Home Care, San Mateo
Topic: Palliative care, hospice at home, and hospice house for Parkinson’s – recommended services and what’s new
RSVP?: No.

 

Sonoma/Vintage House
Thursday, 7/13, 10-11am
Guest Speaker: Margot Schaal, certified Feldenkrais practitioner
Topic: Feldenkrais
RSVP?: No.

 

Walnut Creek (Mt. Diablo)
Saturday, 7/15, 9am-noon (speaker 10:45am-11:45am)
Guest Speaker: Salima Brillman, MD, movement disorder specialist, The
Parkinson’s Institute, Sunnyvale
Topic: Diagnosis and treatment of Parkinson’s
RSVP?: No.

 

Elk Grove
Wednesday, 7/19, 10-11:30am
Guest Speaker: Christy Adams, RN, MPH, trauma prevention coordinator,
UC Davis
Topic: A matter of balance
RSVP?: No.

 

Merced
Thursday, 7/20, 10am-noon
Guest Speaker: Lisa Clawson, LVN, HealthSouth Rehabilitation, Modesto
Topic: Rehab services for PD
RSVP?: No.

 

Sacramento/Arden Arcade
Thursday, 7/20, 10am-noon
Guest Speaker: Christine Shade, DPT, physical therapist, Kaiser Roseville
Topic: Physical therapy and outdoor exercises for PD
RSVP?: No.

 

Mill Valley (Marin County)
Friday, 7/28, 1-3pm (guest speaker 1-2pm)
Guest Speaker: James Nevin, Sr., attorney
Topic: Estate planning and end of life issues
RSVP?: No.