Category Archives: PSP

Partners in Parkinson’s event, Sat Aug 9, 8am to 3:30pm, San Mateo

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This “Partners in Parkinson’s” event on Saturday, August 9th, in San Mateo may be of limited interest to those in our atypical parkinsonism community since the focus is Parkinson’s Disease (PD).  There is no charge to attend but advance registration is requested.

Important note: Last week when I registered, the confirmation webpage showed the wrong date.  But the confirmation email had the correct date.  Don’t be confused!

Brain Support Network will have a table at the all-day (8am to 3pm) resource fair.  You can stop by our table and see all of our new print materials on the top resources for LBD, PSP, MSA, and CBD.  Other community groups and movement disorder centers will have tables to share information and materials.

There will be panel sessions and breakout discussions from 9am to
3:30pm.  Breakfast and lunch will be provided. (No idea about the menu and if it will be “friendly” to those with swallowing problems.)

Speakers include Kathleen Poston, MD, movement disorder specialist at Stanford, Brian Fiske, PhD, vice president of research programs at the Michael J. Fox Foundation, and the Bay Area’s Dave Iverson, veteran journalist and patient living with Parkinson’s.

Registration seems to be online only.  See:
tfaforms.com/337817

Check out this webpage for other event dates in other cities:
partnersinparkinsons.org/attend-an-event

Copied below are the details about the August 9th San Mateo event.

See you there!

Robin

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Partners in Parkinson’s Bay Area

WHO:  People living with Parkinson’s disease and their families

WHERE:  San Mateo Event Center, 1346 Saratoga Drive, San Mateo, CA 94403

WHEN:  Saturday, August 9, 2014, 8:00 a.m. – 3:30 p.m.

EVENT SCHEDULE

Note: A resource fair will be open from 8 a.m. to 3 p.m. for you to
access between and during sessions.

8:00 – 9:00 a.m.    Registration and breakfast
9:00 – 9:15 a.m.    Welcome and Introduction
9:15 – 9:45 a.m.    The Many Faces of Parkinson’s Disease
9:45 – 10:45 a.m.  Seeing a Movement Disorder Specialist: What to
Know, Ask and Expect
10:45 – 11:00 a.m. Morning break
11:00 – 11:45 a.m. Parkinson’s Research: The Road Ahead
11:45 – 12:15 p.m. Moderated Q&A on Morning Sessions
12:15 – 1:15 p.m.   Lunch
1:15 – 2:00 p.m.    Breakout Sessions
2:00 – 2:15 p.m.    Afternoon break
2:15 – 3:00 p.m.    Breakout Sessions
3:00 – 3:30 p.m.    Closing Session: What’s Next?

BREAKOUT SESSIONS
Living Well with Parkinson’s: A Holistic Approach, Led by National
Presenting Partner The Davis Phinney Foundation

Building Connections with Family, Friends and Community

I’m Still Wondering About…
Partners in Parkkinson’s is a collaboration between The Michael J Fox
Foundation for Parkinson’s Research and AbbVie Inc., a pharmaceutical company.

“Tears in My Coffee: Living with PSP” (new ebook)

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PSP folks –

Someone (the author?) recently posted a link to this 21-page Kindle
ebook ($6) on the PSP Forum:

Tears in My Coffee: Living with Progressive Supranulear Palsy
by Shauna Herrington
Published July 2, 2014 as a Kindle ebook
21 pages
$6

The post on the PSP Forum described the book as usual for families
dealing with a new PSP diagnosis.

The author’s husband was diagnosed with PSP about a year ago.  The
author is a retired nurse.

Here’s the description of the ebook, posted on amazon.com:

“Tears In My Coffee” is the story of how we have undergone major
changes and how I found a way to grieve for what is being taken from us everyday.

PSP changes your life not only for the long term, but can change as fast as a few minutes. This book follows our life over the past year and the changes that have been brought about by this disease.

There is very little information published for families about this
incurable brain disease which shares symptoms with Alzheimer’s,
Parkinson’s, and Amyotrophic lateral sclerosis (ALS) diseases all
combined.

Progressive supranuclear palsy (PSP) is a rare degenerative disease of the brain.  The disease impairs movements and balance. Many people with PSP also experience changes in mood, behavior, and personality. A decline in cognitive mental processes, such as thinking, memory, attention, and speech, is not uncommon. When these mental changes are severe enough to interfere with everyday activities, they are called dementia.

I hope “Tears In My Coffee” will help others understand what its like when the world stands still and you are still spinning. Many mornings I sit with my cup of coffee and cry silent tears so no one sees the pain this disease has brought into our life.

Living with Progressive Supranuclear Palsy will help you see how the things that suddenly start becoming a part of your world are not the fault of the patient but are caused by this disease and the patient can not control.

PSP takes over the entire family and will change you whether patient or family.  Patients look the same, sound the same, but are not the same, PSP changes everything.

Thus far, there’s been one reviewer, who said that she was disappointed.

To read all of this, go to amazon.com.  Then do a search on the book title.

If anyone gets this book and reads it, please let me know if it’s any
good.  It would be great if someone could share some things they
picked up from the book!

Thanks,
Robin

 

“PSP: A Primer for the Newly-Diagnosed” (video)

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Though this CurePSP video was designed for those dealing with a new diagnosis of PSP, I think the hopeful messages in the video are worth listening to, regardless of the “stage” of PSP with which you are living. I’ve been handing out the DVD at our caregiver support group meetings for the last 18 months. The video is also available online here:

www.youtube.com/watch?v=eAlLKni9K9E

[Editor’s Note: link updated in 2016.]

I’ve copied my notes on the video below.

Robin

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PSP: A Primer for the Newly-Diagnosed (video)
CurePSP
Published in late 2012 (Robin’s guess)

This 14-minute video includes:
* actress and CurePSP national spokesperson Patricia Richardson
* expert neurologist Dr. Lawrence Golbe
* patient, Thomas Timm, and spouse, Debra Timm
* volunteer Becky Hill

PATRICIA RICHARDSON

Getting the facts is vital.

LAWRENCE GOLBE, MD

PSP is a degenerative disease of the brain. It causes brain cells in many different areas to not work well, and then die off.

There are only 4K-5K in the US with the disease. About three times that many have the disease but aren’t yet diagnosed with it.

1:52 Most common first symptom: unheralded falls. This occurs in 60-65% of people. There’s no change in walking to go along with the falls.

2:03 Next most common symptom is a change in behavior — becoming more withdrawn or more outgoing.

2:11 PSP very rarely runs in families. Fewer than 1% of people with PSP have a family member who is affected.

2:50 Many of the symptoms of PSP can be treated with existing medication.

3:08 There is also physical and rehabilitative treatment, including exercise, that can be very helpful to someone with PSP.

RICHARDSON

Work with therapists as soon as possible, after you’ve been diagnosed.

THOMAS TIMM (patient)

4:30 Balance problems. Then memory problems.

Upon receiving the diagnosis, my wife was terrified.

Ask your doctor to be very upfront and tell you exactly what they expect.

DEBRA TIMM (wife)

6:18 First symptoms: forgetful and distant (not engaging in conversation).

Diagnosis felt like we were both being hit by a train. A lot of things were probably said that we didn’t hear.

7:30 My goal every day is to make his day the best it can be.

When you love someone, there is no burden.

BECKY HILL (volunteer)

8:18 Became a volunteer after caring for my late husband. I wanted to be able to pass along the knowledge I gained.

8:50 Great fulfillment in volunteering. Wonderful to see a difference being made.

Participating in a support group is really important. You find out you are not alone. There is plenty of hope. There’s opportunity to share your knowledge to try to help others who are going through the same thing.

10:00 Most people feel they aren’t support group-candidates. I knew I needed help because this experience was far greater than me. I encourage everybody to make that first call or contact.

RICHARDSON

10:40 Maintaining hope is vital. Hope is as vital as oxygen. Those with hope may live longer and more meaningful lives.

GOLBE

11:07 Hope is a valid scientific opinion. There are lots of new developments going on in understanding and treating PSP. It is realistic to be hopeful. I am hopeful. All the researchers I know are very hopeful. They all expect their efforts will improve the lives of sufferers with PSP.

A good emotional attitude towards one’s illness does help the long-term outcome of that illness.

HILL

11:59 There is going to be a cure some day for PSP.

D. TIMM

12:11 Hope is a state of mind. You need to have a good state of mind. Faith, and you have to be strong.

T. TIMM

12:23 I am very hopeful for the future.

12:35 If you have recently been diagnosed, just remember – there is hope. Keep exercising. Enjoy each day. Take one day at a time. Keep smiling.

[Robin’s note: There’s a cute surprise at the very end of the video.]

The Challenge of Obtaining an Accurate Diagnosis in FTD

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The Association for Frontotemporal Degeneration has published a terrific paper explaining the research and drug development landscape in FTD (frontotemporal degeneration).  FTD is an umbrella term that refers to:

  • Behavioral disorders:  Frontotemporal Dementia – Behavioral Variant
  • Language disorders:  Primary Progressive Aphasia (including Semantic Dementia)
  • Movement disorders:  Corticobasal Degeneration and Progressive Supranuclear Palsy

Here’s a brief excerpt on obtaining an accurate diagnosis.

Robin

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Excerpt from:

FTD Research and Drug Development Landscape
Published May 2014
Association for Frontotemporal Degeneration (AFTD)

The Challenge of Obtaining an Accurate Diagnosis in FTD  (page 11)
Misdiagnosis is a major problem for FTD patients and caregivers, and it can contribute to delays in accurate identification of an FTD syndrome. This is due in part to symptoms that appear to reflect aspects of other dementias, such as AD and mild cognitive impairment (MCI) or psychiatric disorders such as schizophrenia, bipolar disorder or depression. A decade-long retrospective survey of patients at a specialty clinic found that patients with bvFTD receive a prior psychiatric misdiagnosis more often (52.2%) than patients with AD (23.1%), svPPA (24.4%) or naPPA (11.8%). BvFTD patients were also more likely than patients with other neurodegenerative diseases to be diagnosed with bipolar disorder or schizophrenia.

Although memory loss is considered a distinguishing feature of AD, more papers are
appearing in the literature reporting episodic memory loss in FTD. Although revised diagnostic criteria for bvFTD and PPA were implemented in 2011, considerable expertise with FTD and other cognitive disorders is required and it is less likely that the nonspecialist can readily distinguish FTD from AD or psychiatric disorders. There is an urgent need for blood- or cerebrospinal fluid-based diagnostic markers to complement neuroimaging along with improved medical education to support the family physician in discriminating FTD and AD from other disorders.

 

PSP, CBD, MSA, and LBD Research Going On in Northern/Central California

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Probably everyone in our group can find something of relevance in this post.

It has been awhile since Brain Support Network published a list of all of the MSA, LBD (DLB or PDD), PSP, or CBD research studies currently recruiting at non-profit institutions in Northern and Central California.  BSN staff member Arif H. helped compile the list below to encourage everyone our community to participate in at least one of these studies!

Listed below are studies for:  (if you don’t know what an acronym means, just skip over it!)
* those with a PDD, MSA, PSP, CBD, CBS, or DLB diagnosis
* those with RBD and no neurological diagnosis
* those with neurogenic orthostatic hypotension
* those whose parents or siblings had/have PSP
* healthy controls

We’ve listed studies from Stanford, UCSF’s Memory & Aging Center, and UC Davis.  All studies listed are open to anyone — you don’t have to be a patient of one of those centers to participate, and your family member doesn’t have to be a patient either.  (We did not list studies that don’t recruit from the wider community.)

We’ve provided brief info on the specific studies that are actively recruiting below.  Contact the study coordinator to learn what the specific inclusion and exclusion criteria are.

When we say “research study,” we are referring to:
* clinical trials where there is an intervention tested — a drug, therapy, or experimental treatment
* observational studies where participants are observed over time

You can always search for actively-recruiting clinical trials by visiting clinicaltrials.gov.  For good background on types of clinical trials, trial phases, why it is so important that more people volunteer for trails, etc, see this Michael J. Fox Foundation webpage:
foxtrialfinder.michaeljfox.org/understanding-clinical-trials/clinical-trials-101/

Short note to the PSP and CBD families who participated in the February 8th seminar we organized with UCSF:  MAC researchers attended the seminar and were recruiting for three of the PSP and CBD studies mentioned below, so most will be familiar to you.  The clinical trial for PSP and CBS is brand new, and was just posted to clinicaltrials.gov last week.  This is the clinical trial that Dr. Boxer mentioned in February as “being in the works.”

Obviously if no one participates in research, we can never make progress towards finding treatment or a cure for these disorders!  Please check out the list below to see if you, a family member, or a friend can participate.

Robin
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STANFORD UNIVERSITY

LOOKING FOR THOSE WITH PDD (PARKINSON’S DISEASE DEMENTIA) AND HEALTHY CONTROLS

1-SU:  Development of multimodal imaging biomarkers for cognitive dysfunction in Parkinson’s disease

Purpose:  Our goal is to better understand brain networks and biological markers associated with memory changes in Parkinson’s disease, and to find ways of detecting these changes before memory problems develop.

Recruiting:  Primarily recruiting people with a diagnosis of Parkinson’s who have moderate to severe memory impairment (including PDD), ages 50 and up.  Also recruiting healthy control subjects, ages 65 and up.

Principal Investigator:  Kathleen Poston, MD, MS.  Funded by the Michael J. Fox Foundation for Parkinson’s Research.

Contact:  Anisa Marshall [no longer at Stanford]

LOOKING FOR THOSE WITH MSA, PSP, CBD, OR RBD AND NO NEURO DIAGNOSIS

2-SU:  Early Differential Diagnosis of Parkinsonism with Metabolic Imaging and Pattern Analysis

Purpose:  To develop imaging markers that will more accurately diagnose parkinsonian disorders, such as Parkinson’s disease, Multiple System Atrophy, Progressive Supranuclear Palsy, and Corticobasal Degeneration.

We are recruiting:
1: People with an established clinical diagnosis of PD (diagnosed 2+ years)
2. People with an established clinical diagnosis of MSA, PSP, or CBD
3. Any person with REM Sleep Behavior Disorder (RBD), but no other neurological diagnosis.

Study participants will receive at no cost:  brain imaging (MRI and PET), a memory evaluation, and a clinical evaluation.

Principal Investigator:  Kathleen Poston, MD, MS.  Funded by the National Institutes of Health (NIH).

Contact Info:  Hadar Keren-Gill  [no longer at Stanford]

UNIVERSITY OF CALIFORNIA SAN FRANCISCO, MEMORY & AGING CENTER

LOOKING FOR THOSE WITH DEMENTIA WITH LEWY BODIES (DLB)

1-MAC:  Epileptiform Activity in Neurodegenerative Diseases

Purpose:  Assess the frequency of epileptiform abnormalities which we can measure using EEG and MEG.  The epileptiform activity we are exploring may be a sign of hyperexcitability in the brain related to seizures, and has been found in animal models of neurodegenerative diseases.  Furthermore, in animal models the use of an antiepileptic can sometimes improve cognition and this suggests a potential new therapeutic avenue for individuals suffering from neurodegenerative diseases in the future

Recruiting:  Currently recruiting DLB, early-onset variant AD (including PCA and language subtypes in addition to amnestic cases), and behavioral variant of FTD.

Principal Investigator:  Dr. Keith Vossel, MD, MS

Contact:  Alex Beagle, [email protected], phone 415-476-2906

LOOKING FOR THOSE WITH PSP, CBD, OR CBS

2-MAC:  Four Repeat Tauopathy Neuroimaging Initiative (4RTNI)

Purpose: To identify the best methods of analysis for tracking PSP and CBD over time. The results from this study may be used in the future to calculate power for clinical drug trials, as this study aims to identify the most reliable outcome measures.  The study will also provide additional information about the relative value of different imaging techniques for diagnosis, and the value of imaging versus other blood, urine, and cerebrospinal fluid (CSF) biomarkers.

Recruiting:  PSP and CBD patients between 45 and 90

Webpage:  memory.ucsf.edu/research/studies/4rtni

Principal Investigator:  Adam Boxer, MD, PhD.  Sponsored by the National Institutes of Health (NIH) and Tau Research Consortium.

Contact:  Dan (Phi) Luong, [email protected], phone 415-476-9578

3-MAC:  Safety Study of TPI-287 to Treat CBS and PSP

Purpose:  To determine the safety and tolerability of intravenous infusions of TPI-287 administered once every 3 weeks for 9 weeks (for a total of 4 infusions) in patients with primary four repeat tauopathies (4RT), corticobasal syndrome (CBS) or progressive supranuclear palsy (PSP).

Webpage:  clinicaltrials.gov/ct2/show/NCT02133846

Principal Investigator:  Adam Boxer, MD, PhD

Contact:  Emmeline Chuu, [email protected], phone 415-476-0671

LOOKING FOR THOSE WITH PSP

4-MAC:  FamPSP or Familial PSP Study

Goal: To identify genetic risk factors for PSP

Recruiting:
1.  PSP patients with a first degree blood relative with a neurological or psychiatric disorder (e.g. PSP or related disorders, dementia, Parkinson’s, psychiatric illness)
2.  First degree blood relatives of such PSP patients who are either (a) healthy or (b) might have a neurological or psychiatric disorder.  Both affected and unaffected family members are eligible and can provide important information about PSP.

Participants will undergo a neurological exam, cognitive testing, and a blood draw

Principal Investigator:  Michael Geschwind, MD, PhD.  Funded by the Rainwater Charitable Foundation.

UCSF Contact:  Joe Winer, [email protected], phone 415-476-2909.  (Other study sites are UCSD and UCLA.)

5-MAC:  Sleep in PSP

Purpose:  To characterize sleep and daily activity patterns in individuals with PSP; to identify sleep as a biomarker for disease onset and progression; and to develop an intervention to improve sleep and daily activity patterns.

Recruiting:  Individuals with a diagnosis of PSP

Principal Investigator: Thomas Neylan, MD

Contact:  Christine Walsh, PhD, [email protected], phone 415-476-8676

UNIVERSITY OF CALIFORNIA DAVIS

LOOKING FOR THOSE WITH MSA OR NOH

1- UCD:  A Clinical Study of Patients With Symptomatic NOH to Assess Sustained Effects of Droxidopa Therapy

Recruiting Parkinson’s Disease, Multiple System Atrophy, parkinsonism, etc. with symptomatic neurogenic orthostatic hypotension (NOH).

Webpage:  clinicaltrials.gov/ct2/show/NCT01927055

Principal Investigator:  Lin Zhang, MD, PhD.  Sponsored by Chelsea Therapeutics.

Contact:  Virina De Jesus, CCRP, senior clinical research coordinator, phone 916-703-9174, email [email protected]