BSN Supporting Parkinson’s Research Plus Lyme Disease Research

In October 2021, we helped a gentleman with Parkinson’s disease (PD) make arrangements for his brain donation plus donation of his cerebral spinal fluid (CSF) to Lyme disease researchers.  The gentleman had several positive tests for Lyme borreliosis.  He decided this was the best approach in terms of donating — brain for PD research and to confirm the diagnosis, and CSF for supporting Lyme disease research.  He and his family knew that the Lyme disease diagnosis would not be confirmed but this was of no concern to them since he had several positive tests for Lyme borreliosis already But he was hoping that his CSF could aid researchers.

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“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.

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