Category Archives: PSP

SHARE program available to some caregivers in the Bay Area

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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

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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

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“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

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“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.”

2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

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2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

As 2017 ticks down, we hope you enjoy some quality-time with family and friends. We wanted to share our results for 2017. Plus, this is a great time to make a charitable contribution as other generous donors are doubling your contribution.

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:
(1) create and disseminate information on LBD, PSP, MSA, and CBD to members (You are one of 450 Northern Californians on our network’s email list.)
(2) coordinate the local caregiver support group in San Mateo
(3) help any family with brain donation.

We (BSN volunteers and part-time employees) have kept busy in 2017:

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:

(1) create and disseminate information on LBD, PSP, MSA, and CBD to members

(2) help any family with brain donation

(3) coordinate the local caregiver support group in Northern California

We (BSN volunteers and part-time employees) have kept busy in 2017:

* We sent out over 250 email updates, most of which focused on one of four specific disorders: LBD (Lewy body dementia), PSP (progressive supranuclear palsy), MSA (multiple system atrophy), and CBD (corticobasal degeneration). Many emails relate to caregiving and dementia caregiving.

* We published over 600 Facebook posts on similar subjects (because some people prefer Facebook).

* We served as a clearinghouse of information and support for network members.

* We have kept our web site relevant and up to date (e.g. our “Top Resources” lists for the four primary disorders and our blog).

* We organized 94 brain donations (a new record for BSN), most of which were delivered to the Mayo Clinic in Jacksonville. (Of course the year isn’t quite finished.)

* We hosted our largest-ever “Research Update and Practical Conference on PSP/CBD” in cooperation with the UCSF Memory and Aging Center on October 28, 2017, in San Mateo. Conference video and handouts are available.

CHALLENGE GRANT

This is the time of year when we ask you for assistance.

Five long-time support group members and two long-time BSN benefactors have offered a “challenge grant” to network members. Your charitable contributions through December 31st will be matched up to $8,000. Please help us take advantage of this opportunity and help make possible our efforts for the coming year.

If you mail a check, please write “match” on the memo line along with the name of the family member or friend that you are honoring or remembering. Or, enclose a note with that information. Make checks payable to “Brain Support Network,” and mail to BSN, PO Box 7264, Menlo Park, CA 94026. To count towards the challenge donation, checks should be dated and postmarked by December 31, 2017, Your check does *not* need to be received by this date.

If you make an online contribution (via credit card), please write the name of your family member/friend after selecting “in honor of” or “in memory of.” Please append “/Match” to the name of the person. To count towards the challenge donation, online contributions should be completed by Sunday, December 31, at 11:59pm California time.

Brain Support Network is recognized by the IRS as a 501(c)(3) tax-exempt charity and your donations are deductible to the extent allowed by law. Please know that any amount—$25, $50, $100, $250, $500, or more—is appreciated! Thank you for supporting our three missions!

Happy 2018 to you and your families!

Take care,
Robin (volunteer)
Brain Support Network CEO