Caregiving with Love through Neurodegenerative Disease – Webinar Notes

Today, CurePSP ( hosted a webinar on caregiving with Janet Edmunson. It was titled “Caregiving with Love through a Neurodegenerative Disease.”

The presenter was Janet Edmunson.  Janet’s book is called “Finding Meaning with Charles” and is about her caregiving experience for her husband Charles.  Her website — — is worth checking out.  She visited the Bay Area a year ago, and met with some of our support group members and at various other events.

These are the notes I took during the webinar.
The notes are divided into these sections:

* Intro/Timeline – this is of general interest as it’s short

* Symptoms – these are likely of most interest to those dealing with PSP and CBD but those dealing with MSA may find some relevance

* Affirmations – these are of general interest to those dealing with PSP, CBD, MSA, and LBD

* Questions and Answers –  these are likely of most interest to those dealing with PSP and CBD but those dealing with MSA may find some relevance.  (There was one question on LBD.)

* CurePSP+ Overview – this will only be of interest to those dealing with PSP, CBD, and perhaps MSA



Robin’s Note on

Webinar Presenter – Janet Edmunson
Chair of the Board, CurePSP
Author of “Finding Meaning with Charles”


Her late husband Charles developed his own mission statement and read it every day:  “I will make a significant different in the world by bringing grace with integrity into the lives of others.  Therefore, through a disciplined focus, I will apply my life to bringing peace for people who are in turmoil…”

Charles wrote a book called “Paradoxes of Leadership” in the last years of his life.

Charles developed had his first symptoms in 1995 at the age of 45.  First symptoms are trouble with stairs.

1997 they saw Dr. Litvan at NIH.  She suggested CBD.

1998 they saw a group of MDS at Boston Teaching Hospital.  Diagnosis was PSP.

2000:  Charles fought brain disorder for 5 years.  Upon autopsy, it was confirmed that he CBD.


Symptom:  eye movement problems
No peripheral vision or depth perception
Syncopated, double vision, no focus
Problem driving (didn’t know where he was in space)
Reading problems (tracking)

Symptom:  fine motor movements
Buttoning buttons, tying ties
Writing (squiggly and small)
These are called “cortico-sensory problems.”  They are classic symptoms for CBD.

Symptom:  rigidity and unsteady gait
Extremely stiff  (brain caused frozen back muscles to contract at same time)
Neck hyper-extended
Lost ability to run
Lost ability to walk, eventually

Symptom:  not many falls
Falls when jogging
This is a bit different with PSP where falls can be frequent

Other symptoms:
Stiff, unsteady gait
Out of bed
Symptoms started out one-sided  (typical with CBD)
Apraxia – couldn’t do purposeful movements, such as clapping hands
Essential tremor – especially when reaching
Alien limb – foot didn’t feel connected to body and arm would float up  (typical with CBD)
Bladder incontinence started early on.  Charles might’ve gotten to the restroom in time but couldn’t get his trousers down in time.

Symptom:  speech
Slurred, jumbled, though Charles didn’t think it was slurred
Just gave up

Symptom:  swallowing
Straws, sippy cups
Thickening liquids
Pills in pudding and apple sauce
Chopped food into small pieces
He’d “pass out” while chewing.  After awhile, he’d start chewing again.  Happened frequently.  Seizures?
Based on a swallow study, some of the food was being pocketed.  They would tell Charles to swallow a second time.
She recommends a swallow test

Symptoms:  cognitive
Word find
Slowed thought-processing  (this requires patience from caregivers)
Perseveration, where Charles would put the same word (“process”) in every sentence.  (To resolve this, they would have to get Charles off track.)
Yes/No backwards

Symptoms:  behavioral
Depression.  No antidepressants helped.  Finally, an atypical antipsychotic called Seroquel helped with the depression and sleep issues.
Sleep issues.  Charles would wake up every hour!
Obsessions with time and Beatles music
Inappropriate behaviors

Symptoms:  ADLs
Toileting.  Charles sat for 30 minutes on the toilet.
Constipation.  Lactulose and a suppository helped.
Showering.  She recommends a shower chair with a sliding seat.
Washing and combing hair
Brush teeth.  Very hard because Charles would clamp down on the tooth brush.  They got a bite block from the dentist.
Eating.  Charles wanted to eat on his own.  It was a mess with food everywhere.  He eventually had to accept help.
Transfers from the bed, to a recliner, and to a wheelchair.  They were taught how to do transfers by an OT.  They used a Hoyer lift later on (with hospice).

What could’ve caused this?  We don’t know.
Family history?  Dad had PD, Mom had AD.
Chemical exposure?
Heart disease or treatments?
Very low-fat diet?  (You need fat for your brain function.)
Diet sodas that used sacchrine?
Gum disease?
Tick bites?  Charles was never tested for Lyme Disease.
Sleep issues?  Charles had sleep apnea.
Mobile phone use?

She encourages those with PSP (who can still talk or communicate) to enroll in Dr. Litvan’s PSP study.  See


“When life kicks you, let it kick you forward.”  (Message from someone with breast cancer.)

Affirmations:  positive messages; uplift; inspire

Caregiving Affirmation #1:  hold on to your passions because they are the essence of who you are
Examples:  hobbies, being with friends, genealogy

Caregiving Affirmation #2:  I can make it through the difficult transitions of this disease
First hard transition for Charles was not driving
Another hard transition for Charles was not walking and using a wheelchair
Another hard transition for Charles was accepting an aide

She suggests that family members allow others to help:  don’t try to do all the caregiving yourselves!
Make a list of tasks that you’d like to have done.  Whenever someone says “is there anything I can do for you?,” take out the list and say “can you do this?”
See to allow family and friends to help

Caregiving Affirmation #3:  explore life’s adventures together to store up fond memories that will sustain you
Example:  celebrate your anniversary every month
Example:  dinner with friends at your house, with Subway sandwiches, paper plates, and paper cups

Caregiving Affirmation #4:  I will give myself credit for staying strong despite being pushed to my limits

Caregiving Affirmation #5:  I will give myself grace when I occasionally blow it

Caregiving Affirmation #6:  I will expect that some people will find it difficult to visit my loved one.  That’s OK — it doesn’t mean that they’ve stopped caring.
Consider encouraging visitors to come over in pairs so that they can talk and your loved one can listen in

Caregiving Affirmation #7:  I will remember that the difficult personality changes are not my loved one — they are the disease

Caregiving Affirmation #8:  I will consider hospice sooner versus later; the support will bring me relief

Caregiving Affirmation #9:  It’s perfectly normal to grieve even before my loved one dies
You grieve with each loss.
Janet bought a grief book even before her husband Charles died.

Caregiving Affirmation #10:  Look for the gifts that only this type of tragedy can afford
Caregivers can gain patience
Caregivers can make new friends at support groups
One gift – the ability to say “goodbye”

Last thought from Charles’s boss:  “May this [disease] make you better, not bitter.”

QUESTIONS AND ANSWERS  (answers are by Janet Edmunson, unless indicated)

Q:  Why does it take so long to get a diagnosis?

A:  To get it right, probably isn’t as important as we think it is.  For the person with the disease, getting a diagnosis is very important.

It takes time for enough symptoms to appear so that a diagnosis can be made.

Many people start with a primary care physician, who has probably never seen another person with these diseases.  Even many neurologists haven’t seen people with this disorder!

Get a DVD from CurePSP to give to your MD!  [You can find it here:]

Q:  Where can I find an online group of caregivers?

A:  There’s the PSP Forum at

There are a few Yahoo!Groups available:  ShyDrager, PSPinformation, cbgd_support.  Look in the health section on Yahoo!Groups.

[Robin’s note:  There are four Yahoo!Groups that deal with MSA:

“ShyDrager” –

“Multiple System Atrophy” –

“idcircle” –

“ChristianMSAGroup” – ]

Q:  How did you remain so positive?  I don’t think it is reasonable that someone can remain as upbeat as you did during your caring for Charles.

A:  Part of it is Janet’s optimistic nature.  What’s the alternative?  See “Learned Optimism” by Martin Seligman.  He says that optimism energizes.

Q:  What did the brain autopsy show?

A:  The pathologist said that the diagnosis was hard for her to finalize.  It looked like both PSP and CBD, but more like CBD.  Charles also said hardening of the blood vessels in the brain.

See info on brain donation here:

Talk about brain donation now!  Be sure that all the paperwork is handled about 2 months before your loved one dies.

CurePSP pays for most of the charges associated with brain donation.  Families often have to pay a local pathologist for the extraction.  CurePSP can reimburse families for part of these costs.  [Robin’s note:  this reimbursement is available to PSP, CBD, and MSA families only.]

A by John Burhoe (CurePSP Outreach Committee Chair):  Lou’s brain was donated.  Hospice did a lot of groundwork on the brain donation arrangements.

Q:  How did you balance working fulltime and caring for Charles?

A:  Janet had a team of aides.  Because she couldn’t afford 7×24 aides, she had some volunteer aides.  Hospice provided some aides.

A by John Burhoe:  John was able to work at home.

Q:  Where can I find the latest information on PSP?

A:  See  In particular, find the Guide or Guidebook.  This can be downloaded for free or it costs $10.  [See:]

Also get on the CurePSP newsletter mailing list.  It comes out quarterly.  This will keep you up to date on research.

Tune in to the frequent webinars, organized by Larry Schenker.

Also see (for MSA), (for LBD), (for CBD).

Call Vera James with the Shy Drager Support Group (MSA).

Call any of the “communicators” listed.  It doesn’t matter if they are in a different state than the state you live in.

A by John Burhoe:  The website is being updated and will be launched at the end of the year (November) or early next year.  All these webinars will be available on

All of the support groups are listed by state.  And there are “communicators” as well, listed by state.

Other sources of support:  physical therapy facilities, your church, hospice, friends.

Q:  How do you discuss poor judgments with a parent who is no longer independent but still believes she can take care of herself?

A:  Get the MD involved in explaining to the patient what is needed.

Q:  Can you describe the speech exercises you did with Charles?

A:  Her sister developed the LSVT for PDers.  She instructed Charles to keep saying “aaaaaahhhhh” for as long and as loud as he could.  Also, she instructed Janet to give a word to Charles and then Charles had to come up with a sentence using that word.

She recommends finding LSVT-trained speech therapists for those with PSP, CBD, and MSA.  See:  They also have LOUD training.

A by John Burhoe:  The swallow tests always came out clear though, at home, Lou was always gagging and choking.

Q:  How do we make the journey as easy and dignified as possible?

A:  Keep telling your loved one how much you love them.

Use utensils to let people keep eating with dignity.  Figure out how to use the bathroom with dignity.

A by John Burhoe:  Keep doing things!  He kept taking Lou to church every week.

Q:  Do PSP patients understand what is going on around them?

A:  They may not, but we don’t know.  Treat them as if they do.

A by John Burhoe:  Hell yes.  Lou was right there, all the way through.  Treat them just as you treat everyone else.  Don’t let someone talk about your loved one in the third person (“does she want this?”).

Q:  What are the pros and cons of a feeding tube?

A:  One consideration is how much quality of life is there.  It seems appropriate if it’s very early in the disease course.

Be sure you discuss when the feeding tube should be removed or when tube feedings should be stopped.

A by John Burhoe:  There’s no right or wrong answer.  It’s a very personal decision.  It should be discussed early on so your loved one can be involved in the discussion.

They chose not to have a feeding tube because they were concerned it would extend life, and they were concerned it would be necessary to move Lou outside the home.

Q:  Can you speak about LBD?  It was my understanding that this webinar would be relevant to our situation (my wife has PDD/LBD) but you mostly spoke about PSP and CBD.

A:  The hard part is the dementia element to LBD.  Dementia gives caregiving more of an emotional component than a physical component.

We often confuse dementia with Alzheimer’s Disease.  They are different.

Behavioral things that can happen in LBD can be very disturbing to the caregiver.  Someone with LBD can accuse his/her spouse with having an affair.

Bringing humor to a the situation is so important!  (Husband with LBD:  you have other men in our bed at night!  Wife:  that’s why I got a big bed.]

Do not argue with hallucinations and delusions!

Q:  Can we get a copy of this slide presentation?

A:  Email Janet at [email protected] for a copy of these slides.

Hopefully the CurePSP website will eventually include the recordings of these webinars.

Q:  Can PT help to slow these disorders?

A:  I’m not sure it can slow these disorders.  PT can give quality of life.

A by John Burhoe:  The biggest aspect of PT for Lou was the social interaction.

Q:  Does CurePSP have more information about what my husband with MSA will experience in the coming years?

A:  We are getting more info about MSA onto our website.  The Board just approved including this disorder in its mission.


A by John Burhoe:  Don’t forget

Q:  Does anyone have puffy cheeks?  I have PSP.  Puffy cheeks caused me to bite the inside of my mouth.  It affects my speech and chewing.

A:  Don’t know anything about this.

Q:  I have PSP.  Should I try to walk and stay active, even though I fall alot?

A:  We don’t want you to fall!  If you break a bone, this will bring you down a lot.  Let someone hold onto you or use a gait belt around you.  There are techniques you can learn from a PT on how to walk.

It’s important to get a 4-wheeled walker or a very good 3-wheeled walker.  It’s a great idea to get a walker with a basket and seat.  You might consider putting weights on the walker.  You might look at

A by John Burhoe:  Put a fold-up wheelchair in the car so you can still get out!

A by Larry Schenker (webinar organizer):  You might consider a brace that comes down from the ceiling while you are on a treadmill.  Consider using a helmet.  Consider swimming.

Q:  My husband signed up for the PSP genetic/environmental risk factor study at Case Western Reserve University in Cleveland.  What other PSP studies are there?

A:  See

There’s a CoQ10 study at Lahey Clinic.

There’s a lithium study funded by NIH.

You might be able to be seen at NIH for evaluation.

There’s a drug study coming up for NAP.  It is coordinated by Dr. Adam Boxer at UCSF.

Brain donation is an important means of research.  There are over 1000 PSP and CBD brains being looked at now in a genetics study.

Q:  How did John Burhoe travel despite his wife’s incontinence?

A by John Burhoe:  On airplanes, John could lift Lou onto the plane.  They sat next to the toilet.  This was never a problem.

A:  Charles used Dignity pads along with Depends.  This is an extra pad that goes inside the Depends.

Charles used a condom catheter on airplanes.

Q:  How can I get Janet’s book “Finding Meaning with Charles”?

A:  At a bookstore, on, on, on

Q:  Is there a doctor any place in the world that we might be able to visit to get a definitive diagnosis?  My wife’s neurologist can decide between MSA, CBD, or PSP.

A:  See a movement disorder specialist, not just a neurologist.

She recommends seeing Dr. Larry Golbe.  Or:  Dr. Ravi in Boston, Dr. Diana Apetauerova at Lahey Clinic in Boston, Dr. David Riley in Cleveland.

A by John Burhoe:  He found good MDs at Mass General and Scripps.

He recommends seeing someone at a major teaching hospital such as the University of Michigan, Duke, or UCLA.


CurePSP+ Vision Statement:  cure and prevent PSP, CBD, and related disorders

CurePSP: started in 1990; 30 members initially; now, the organization communicates to over 30K people a year and receives gifts from over 8K donors

Educational Mission:
PSP, CBD, MSA, AGD (Argyrophilic Grain Disease), Pallidal Degeneration

Research Mission:
PSP, CBD, AGD, Lytico-bodig (LyB), Guadelupean Tauopathy (GT)

Outreach and education:
Guidebook and other materials
Website (videos, downloadable materials, Forum, resource)

Research:  118 research projects since 1997; values at $8.2 million
Genetics Consortium:  funded primarily by Charles D. Peebler, Jr; 13 member scientics from US, UK, and Germany
Major Programs:  Pollin Fund for CBD; Troxel Brain Bank; General Investigator-Initiated Projects

Areas of Research:
tau genetics
non-tau based pathologics
non-tau based genetic studies
anatomic and histopathologic surveys
brain bank
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