Notes from the Care Partner Meetup: August 2024
Description
Written by Connie Carpenter Phinney
For this month’s meetup, we were pleased to welcome Dr. Mark Mapstone as a special guest. Dr. Mapstone is a professor of neurology at UC Irvine and the chief of neuropsychology. He is currently researching new ways to screen for neurodegenerative diseases before symptoms arise. He joined us to help us understand Parkinson’s better and to help us focus on our own emotional and spiritual health.
If you haven’t already signed up to attend our sessions live, you can do so today.
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An audio-only version of this webinar is available as well.
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MEETUP NOTES
How to deal with changing symptoms
Panelist Pat Donahoo’s wife Cid has recently experienced an uptick in her anxiety. Pat asked Dr. Mapstone for guidance about how he could better cope with Cid’s changing moods, which he noted were harder for him to navigate because of her softening speech.
Dr. Mapstone said, “The speech characteristic is called hypophonia, which means low speech. The volume goes down, and when you combine that with the motor aspects of poor articulation, you get kind of this slurry, rushed, low-volume speech.”
Dr. Mapstone also noted that hypophonia often leads to increased isolation, and he suggested finding times in the day to communicate when your person with Parkinson’s is not having those problems, perhaps based on medication timing. Pat said he and Cid intend to learn some sign language to get by, and we have heard from other care partners that this can be effective.
Variables that can affect mood
Because Pat’s wife has a deep brain stimulation (DBS) implant, Dr. Mapstone talked about how the implant involves emotional, cognitive, and motor pathways in the brain.
Dr. Mapstone noted that it is important to talk to the device programmer and confirm that they are not only programming for movement, but also for cognition and mood. He noted most programmers try to control tremor and dyskinesias with their programming and overlook other pathways. If you and your person with Parkinson’s are considering DBS surgery, talk with your care team about placement of the DBS leads relative to these concerns, too.
Why is anxiety a problem for people with Parkinson’s?
Dr. Mapstone said, “Parkinson’s is a neurodegenerative disease. It’s a disease in which cells in the brain…are dying off. These cells make a chemical called dopamine and other neurotransmitters. This is a key chemical in the brain that’s necessary for cognitive networks, emotional networks, and motor or movement networks. Dopamine plays a role in all of these things, and if your brain is not making as much of that, those pathways are not firing the way that they should.”<span data-ccp-props="{"201341983":0,"335557856":16777215,"335559739":0,"335559740":4
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