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

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:


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

I’ve copied my notes on the video below.



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


Getting the facts is vital.


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2:03 Next most common symptom is a change in behavior — becoming more withdrawn or more outgoing.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


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.


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.


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


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.


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


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


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

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.



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.


“A new normal” – 10 things learned about trauma

This post is of general interest.

Recently, I saw an online magazine article called “A new normal.”  The online magazine, “catapult,” is a Christian publication; it “fosters collaborative thought on practically living out faith in all areas of life and inspires hopefulness and action through the experience of community.”  I don’t find this article very religious, which is why I’m sharing it here.

There are not a lot of details about the writer, Catherine Woodiwiss.
She writes on faith, policy, and culture.

The author lists the ten things she learned from experiencing trauma.  We aren’t told what kind of trauma the author experienced.

It resonated with me in terms of dealing with the trauma of a loved one’s death.  It may resonate with many of you in different ways — whether you be a care giver or care recipient.

Here are the ten things the author learned:  (with details on a couple)

1.  Trauma permanently changes us.

2.  Presence is always better than distance.

3.  Healing is seasonal, not linear.

4.  Surviving trauma takes “firefighters” and “builders.” Very few
people are both.

5.  Grieving is social, and so is healing.

6.  Do not offer platitudes or comparisons. Do not, do not, do not.

“I’m so sorry you lost your son, we lost our dog last year…” “At
least it’s not as bad as…” “You’ll be stronger when this is over.”
“God works in all things for good!”

When a loved one is suffering, we want to comfort them. We offer
assurances like the ones above when we don’t know what else to say. But from the inside, these often sting as clueless, careless or just plain false.

Trauma is terrible. What we need in the aftermath is a friend who can swallow her own discomfort and fear, sit beside us and just let it be terrible for a while.

7.  Allow those suffering to tell their own stories.

8.  Love shows up in unexpected ways.


9.  Whatever doesn’t kill you…


There will be days when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.

10.  …Doesn’t kill you.

The short article is worth reading in its entirety.  See:


A new normal
by Catherine Woodiwiss
catapult Magazine, vol. 13, num. 1, January 2014



“Exploring Positive Psychology in Caregiving” (Webinar, Thurs 6-26, 11am CA time)

Some of you may know of Janet Edmunson.  Her husband was thought to have PSP when he was alive but brain donation revealed he had CBD. (Both PSP and CBD are disorders in our local support group.)  She wrote a book titled “Finding Meaning with Charles” on what she learned as a caregiver; the book is organized around “caregiver affirmations.”

She visited the Bay Area several years ago and spoke on the topic of
“caregiver affirmations.”  She also joined several meetings with group
members.  Janet is the chair of board of CurePSP.  Plus she has been
hosting webinars for caregivers for the last couple of years.

Janet sent out this invitation recently for a 45-minute webinar
tomorrow (Thursday, June 26th, at 11am CA time) for caregivers that is hosted by eCareDiary.  If that’s not a convenient time for you, you might register anyway so that you can receive a link to a recording of the webinar.

The topic is:  Are You Emotionally Healthy? Exploring Positive Psychology in Caregiving.

If anyone participates in this webinar and is willing to share
highlights, please email me with your highlights so that I can share
with everyone here.

To get on Janet’s email list, visit her website at janetedmunson.com.



Are You Emotionally Healthy? Exploring Positive Psychology in Caregiving

Caring for someone with a debilitating illness can drain us of the
emotional health we need day-to-day.  Whether you are a pessimist or
optimist, research in positive psychology demonstrates that we can
adopt a healthier thinking style that fosters strength, creativity and
resilience. Janet Edmunson, M. Ed. and author of “Finding Meaning with Charles,” explores this exciting research and uses practical
activities to explore positive ways to get through this challenging
life experience. Join us for this FREE 30 minute Webinar followed by a 15 minute Q&A session.

Presenter: Janet Edmunson
Janet Edmunson is an inspirational speaker and author of the book,
“Finding Meaning with Charles”.

Host: Susan Baida
Susan Baida is the Co-founder of eCareDiary.

Airdate:  Thursday, June 26, 2014
Time:  02:00 PM EST
Duration:  30 min + 15 min Q&A

Sign in to watch now:
If you can’t make the webinar, register anyway and we will send you a
link so that you can watch later.


MSA Coalition’s 2014 Conference for Patients/Family

This announcement about the MSA Coalition’s 2014 Conference for
Patients and Family was posted to the ShyDrager Yahoo!Group recently.

The conference is on October 17th and 18th in Crystal City, VA (near
Washington, DC).  I believe they have started recording these events
and DVDs are eventually available.  But, if anyone attends from our
local support group, please share your notes!



You are cordially invited to attend:

The MSA Coalition’s
2014 Conference
For Patients
Family & friends

When: October 17 -18, 2014

Where: Arlington, Virginia

Hotel: The Westin Crystal City

Airport: Washington National (DCA)

Cost: There is no fee to attend this educational conference. Meals and
snacks are provided at no charge.  Should you wish to help us offset
our costs we kindly suggest a $40 donation per person.

RSVP: Please Register with the MSA Coalition
(add www to the front of this website address)


Friday, Oct 17
6:00pm – 9:00pm Friday Evening Welcome Social Hour — No charge
A generous selection of hot and cold hors d’oeuvres, fruit & cheese
trays, cookies, coffee, tea and soft drinks

Saturday, Oct 18
7:30am Breakfast buffet — No charge
Full hot American breakfast buffet, coffee, tea and juice
9:00am Medical Presentations — speakers and topics TBD
10:30am Break & Snacks
10:45am Medical Presentations
12:00 Noon Lunch buffet — No charge
Hot and cold lunch items, coffee, tea and soft drinks
1:00pm Medical Presentations
2:15pm Break & Snacks
2:30pm Medical Panel – Q & A
4:00pm Patient/Caregiver/Survivor Breakout Sessions
5:00pm Conference Adjourns