Australian pop duo The Veronicas – mother with LBD and PSP

Australian pop duo The Veronicas were recently named ambassadors for Dementia Australia, after putting their music on hold last year to spend more time with their mother.  After four years of misdiagnoses, their mother was diagnosed with Lewy Body Dementia (LBD) and progressive supranuclear palsy (PSP). Their goal is to use their platform and their mother’s story to break down the stigma and shame surrounding dementia, and to build a social movement to advance community awareness.

Check out the article about The Veronicas here:

www.dailymail.co.uk/tvshowbiz/article-5892653/The-Veronicas-discuss-helping-mother-cope-dementia.html

Cancelled – “What If It’s NOT Parkinson’s?” Webinar on Tuesday, June 12th

Update on 6/11/18:  Unfortunately this webinar is now cancelled.

Brain Support Network group member Steven Russell shared with me today info on an upcoming webinar, which will give an overview of all four of the atypical parkinsonism disorders — MSA, LBD, PSP, and CBD.  Details are:

What If It’s NOT Parkinson’s?

In this webinar, Dr. Mihaela Alexander, Colorado Neurodiagnostics, will discuss atypical parkinsonisms such as multiple system atrophy and Lewy body dementia, among others (PSP, CBD). Dr. Alexander will cover what we know about these conditions and what treatments are available for each condition.

Tuesday, June 12
10-11am CA time

Organizer:
Parkinson Association of the Rockies, Denver, parkinsonrockies.org

Registration:
attendee.gotowebinar.com/register/3367947443153312002

General Information:  (same as what is above)
parkinsonrockies.org/programs-services/event-calendar/276/2018-06-12/what-if-it-s-not-parkinson-s-webinar

 

Sad story about woman with PSP who tells daughter to “remember me dancing”

This is a sad story about a daughter whose mother has progressive supranuclear palsy (PSP).

Excerpt: “Remember me dancing,” my mom managed to tell my stepdad a couple months ago, as she was wheeled out the door headed to the place with round-the-clock care where she will die.

The full article is here:

www.tallahassee.com/story/news/2018/05/19/remember-me-dancing-mothers-long-goodbye/624773002/

Robin

 

“The Happy Hours” – great idea for socialization and other thoughts from KLS

Kathryn Leigh Scott (kathrynleighscott.com) has recently published three books about caregiving —
“The Happy Hours”
“A Welcome Respite”
“Now With You, Now Without”

In January 2018, I shared Denise’s short review of “A Welcome Respite.”

In 2016, Kathryn Leigh Scott (KLS) published the beautiful book “Last Dance at the Savoy,” about caring for the love of your life through the very end. KLS mentions Brain Support Network for help with brain donation in this book. Denise’s short review of that book is posted to our blog, www.brainsupportnetwork.org/blog.

After listening to a February 2018 interview* of Kathryn Leigh Scott, I think “The Happy Hours” might be of interest to some of you. I haven’t read it yet but, in the interview, Kathryn shares the core idea of the book. In her husband Geoff’s final years — after he was diagnosed with progressive supranuclear palsy (PSP) — she was determined to make the most of his remaining time. And she was determined that neither Geoff nor she, as the caregiver, would be isolated.

KLS and Geoff instituted “happy hour” at their home. The happy hour took place in the master bedroom. She removed all signs of medical equipment or disability. She added a bistro table and chairs. There was an open door policy. Anyone could come. Geoff wore an amplification device so that his voice could be heard. Apparently these gatherings were very important to her husband as they helped him be remembered by others.

In the interview, she mentions a few other things worth sharing here. First, she says that the key is to have patience. She tried to remember that “Geoff can’t help it.”

Second, she found the role reversal of caregiving very difficult.

Third, she addressed the importance to her husband Geoff of his engaging in research. He participated in trials. And he donated his brain for research. They both participated in an environmental study of PSP.

Fourth, she recommends hospice at home. She doesn’t call hospice “end of life care” but rather “quality of life care.”

A few things were said about PSP in the interview. I’ve put some notes about that below for the PSP folks on this email list.

Robin

———–

* https://www.youtube.com/watch?v=j4hzl7SYseA&feature=youtu.be

The caregiver-related part of the interview is basically from minute 6 to minute 22.

From minute 6 to minute 10:27, Kathryn Leigh Scott offers some general information on PSP. She describes PSP as being part of a family of five progressive movement disorders. The five are PSP, corticobasal degeneration, multiple system atrophy, Lewy body dementia, and ALS. The host of the interview incorrectly refers to these as auto-immune disorders. KLS said that 20K people a year are diagnosed with PSP in the US. PSP research is informing Alzheimer’s research.

SHARE program available to some caregivers in the Bay Area

This blog post will be of interest to those living in the San Francisco Bay Area, who are caring for those age 60 or older without dementia.

Northern California-based Family Caregiver Alliance (caregiver.org) is
organizing a free educational program called SHARE.

Within Brain Support Network, three types of caregivers are eligible —
* PSP caregivers not dealing with dementia
* CBD caregivers not dealing with dementia
* all MSA caregivers

The care receiver (person with a neurological diagnosis) must:
–  Be over age 60
–  Be living at home in the San Francisco Bay Area
–  Have intact cognitive abilities – NO dementia
–  Not be in the terminal stage of their disease

The caregiver will receive:
–  6 in-person home visits
–  Learn effective communication skills
–  Learn to reduce stress
–  Learn to promote health
–  Learn about long-term care management (make the most out of today
while planning for tomorrow)

If this is of interest, contact Michelle Venegas (415-434-3388, x323,

[email protected]) at Family Caregiver Alliance.

Video of man with PSP with messages to recently-diagnosed people

This morning, I came across this post on an online PSP support group and received permission to share it here.
Robin

———————

From Bill Gibbons
Lindon, UT
I was diagnosed with PSP five years ago. I recorded a video of friendship and greeting, especially intended for those of you with the disease, and with a special sense of regard and best wishes for those recently diagnosed.

youtu.be/0Y-nejkZLl8

“Chicago Med” TV show had a PSP patient

On Tuesday, January 16, 2018, the NBC TV show “Chicago Med” had a story that included a woman with progressive supranuclear palsy (PSP). The same woman had appeared in a previous episode where some details were given of PSP. In last week’s show, the patient had pneumonia. There was lots of discussion of a do-not-resuscitate (DNR) order and being placed on a ventilator. The patient died.

One person on an online support group said that last week’s TV show gave her a good opening to discuss pneumonia, end-of-life treatment, and the topic of a DNR with her spouse with PSP.

There was also some discussion online about how the lady with PSP had no problems with cognition, speech, or her eyes.

Here’s a link to Tuesday’s episode:

www.nbc.com/chicago-med/video/over-troubled-water/3649706

Robin

“A Welcome Respite” by Kathryn Leigh Scott

Last year Brain Support Network (BSN) volunteer Denise Dagan recommended the book “Last Dance at the Savoy,” by Kathryn Leigh Scott, to BSN members.  It is a beautifully written account of the author’s caring for her husband, Geoff, with progressive supranuclear palsy (PSP).  In it she shares both her struggles and lessons learned as a long term caregiver.

This year Kathryn has published “A Welcome Respite,” which is a stand-alone chapter about her struggles with caregiver exhaustion and the need for respite.  She shares the gradual, almost insipid way in which changes to their routine, which she thought were necessary due to Geoff’s progressing symptoms, were destructive to both their quality of life and the closeness of their relationship.

Fortunately, she also shares how she made positive changes to counter the negatives — once she was able to recognize the signs of caregiver exhaustion.  Obviously, her purpose in setting apart these excerpts from “Last Dance at the Savoy” are to help readers recognize their own caregiving exhaustion and offer suggestions to counter it.  Kathryn encourages long term caregivers to “find a new perspective and refresh ourselves…Daily periods of rejuvenation are vital, too.”

Like “Last Dance at the Savoy,” “A Welcome Respite” is NOT focused on PSP.  It is of general interest to all caregivers.  It can be purchased on Amazon for less than two bucks.

Here are a few passages Denise thought worth sharing.  Denise says:  Perhaps you will recognize yourself in some of them.

Robin

————-

“In preserving the impression that all was fine, I was downplaying the increased responsibility and daily adjustments that gave me less time to refresh myself.  The lack of respite resulted in concealed anxiety and increased fatigue.”

Geoff’s “desire to keep his condition secret meant fewer outings and less social contact.  As he required more care, I cut back on my professional work and outside activities, and we spent much of our time alone together.”

“I’d been slipping into unhealthy habits without realizing it, focusing entirely on Geoff’s welfare and ignoring my own.  I’d prepare special, easy-to-eat meals for Geoff but neglect to put food on my own plate, my dinner turning into an afterthought of leftovers eaten over the kitchen sink.  I’d make a nourishing smoothie for him but fail to have one myself.  I learned how to use a gait belt to give me a firm grip when I took Geoff for walks in the park and rigged an over-the-door fully system for him to exercise with at home, but stopped going to the gym myself and didn’t make time for my own fitness routine.  At the end of the day, in an effort to unwind, I’d pour an extra glass of wine when a quiet, reflective walk in the garden would have served me – and Geoff – better.”

After lunch with a fellow caregiver support group member Kathryn observed, “On my drive home, I realized Mari and I had each expressed major signs of caregiver burnout; anxiousness and fatigue; difficulty sleeping; feeling run down and irritable.  Making mistakes while functioning on autopilot indicates difficulty concentrating.  Feeling resentful and overreacting to minor mishaps, shouting at the very people we were caring for – Mari and I had both experienced these.  Were we also eating and drinking more in place of healthier leisure pursuits?”

“There comes a point when caregivers simply cannot do it all on their own.  When the time care for home hospice for Geoff, it should have felt like a respite to me, but I couldn’t see it that way at first.  With hospice in place, I was no longer my husband’s sole caregiver – a major disappointment.  A doctor was on call, with rotating shifts of nursing aides bathing, feeding and medicating him while I stood by, empty-handed, watching others do what I ought to be doing, and hating that I’d relinquished the intimacy of caring for Geoff myself.”

“Being stripped of the mind-numbing routine labor of caregiving had left me rattled and uncertain.  I was experiencing a curious withdrawal anxiety, wanting to be in charge and fearful that I wasn’t.  Stress at not being ‘burdened’ was getting to me.  I was crying too much, not eating enough.  I needed respite and knew it.”