I had a small chuckle at this article on a single case of “purposeless groaning” in Parkinson’s disease (PD):
OFF-Period Purposeless Groaning in Parkinsonism
Neurol India
2022 May-Jun; 70(3):1232-1234.
Vikash Agarwal, et al
Monthly Archives: July 2022
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.
High burden on those with PSP and their caregivers, regardless of type
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.
Poem about caring for someone with dementia (Esquina Poetica)
This is a beautiful poem about caring for and loving someone with dementia. I saw it on the “Esquina Poetica” (Poet’s Corner) Facebook page.
Excerpt:
[It] is not our job to hold anyone accountable to the people they used to be.
It is our job to travel with them between each version and to honor what emerges along the way.
Check out the full poem below.
Robin
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Poet’s Corner / Esquina Poetica
July 9, 2022
Posted by:
Heidi Priebe
Maxine Noel, Soulmates
To love someone long-term is to attend a thousand funerals of the people they used to be.
The people they’re too exhausted to be any longer.
The people they don’t recognize inside themselves anymore.
The people they grew out of, the people they never ended up growing into.
We so badly want the people we love to get their spark back when it burns out; to become speedily found when they are lost.
But it is not our job to hold anyone accountable to the people they used to be.
It is our job to travel with them between each version and to honor what emerges along the way.
Sometimes it will be an even more luminescent flame.
Sometimes it will be a flicker that disappears and temporarily floods the room with a perfect and necessary darkness.
“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.
—————–
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.