This international study (US and five European countries) found that there is a high burden of progressive supranuclear palsy on patients, caregivers, and healthcare systems, regardless of PSP phenotype.
Category Archives: Caregiving – General
“I got tired” (poem by Parkinson’s caregiver)
At one of our recent local Lewy body dementia caregiver support group meetings, a caregiver said that she felt as though she had “run out of gas.” A few days later, I ran across this story/poem on a Facebook group for Parkinson’s caregivers.
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Lorie R. (from Caregivers’ of Parkinson’s Disease Support Group on Facebook)
Somewhere along the way I got tired.
I got tired of the noise- the constant grunting, groaning and sex sounding noises that are not that.
I got tired of getting something for him and sitting down and then being asked for something else.
I got tired of having to leave every event early.
Never being on time.
I gave up on going to church because he cannot manage to get ready on time no matter how early we get up or how much I helped.
I saw friends visits lessen or stop altogether.
Dealt with sexual addiction, pornography, accusations that were not true.
Fled the house and slept at my job because of accusations.
I’ve been injured trying to pick him up five minutes after I had just gotten him up.
We do not have conversation because I can’t understand him anymore and he gets mad at me for his speech.
Learned to take my supper alone because he won’t come in the house because he is perseverates on whatever he is trying to do that isn’t going good.
Been through many arguements about things that absolutely make no sense.
I used to be positive and supportive.
I want to be but I am just tired
I lost my compassion
I have gotten weary of doing good
I have lost most of him and a good chunk of me.
I still love him but he makes it truly hard to sometimes.
I still believe And pray to God that he will heal him
But.
I am simply tired.
“Managing Swallowing Changes” – CurePSP webinar notes
In late June 2022, CurePSP (curepsp.org) hosted a webinar on “Managing Swallowing Changes in PSP, CBD, and MSA” with Stanford speech language pathologist (SLP) Julie Hicks. Her presentation provided general information about working with an SLP, what a swallowing evaluation looks like, and what treatment might involve. In the question-and-answer period, Julie Hicks addresses when to see an SLP, the use of feeding tubes, practical tips families can use to help people slow down and control impulsivity while eating, and how to find an SLP with experience treating those with parkinsonism disorders.
40% of Elderly Brains Found to Include “LATE” (brain research)
Researchers studying donated brain tissue coined the term “LATE” a few years ago. “LATE” stands for limbic-predominant age-related TDP-43 encephalopathy.
Checklist for When Your Loved One Dies
In May 2022, Lisa Stambaugh, daughter of a local support group member with Parkinson’s Disease, created a website, WhenYourLovedOneDies.com.
In 2015, when Lisa’s father Ira died, Lisa searched online for a list of all the tasks that needed doing when someone dies. She did not find a comprehensive list. So, at that time, she created a to-do list in Google Docs to share with her sister and keep them both organized. Lisa converted the Google Docs list to a PDF, and has been sharing it with interested parties that way.
Now, she has created a website, where both the Google Docs and PDF are posted. See:
The Checklist
May 2022
Lisa Stambaugh (WhenYourLovedOneDies.com)
Like all good lists in this category, it has sections based on timeframe — things to do immediately, things to do soon, things to do later.
For those in the SF Bay Area, the advantage of this checklist is that it includes some helpful Bay Area-specific info, such as phone numbers for PG&E, etc.
The Brain Support Network blog has a few other checklists to consider:
Three good lists from 2010 and 2012 (especially a list of 100 things)
Help for Seniors list from 2020 that is specific to spouses and includes a list of needed documents and information
Robin