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.
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An audio-only version of this webinar is available as well.
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.”
Dr. Mapstone also pointed to the fact that the progressive nature of Parkinson’s can be a factor in anxiety. He said, “Frankly, your person with Parkinson’s disease is dealing with a life-altering illness, a neurodegenerative illness: It’s getting worse. And it doesn’t take much to put yourself in their shoes and say, how would I react to this?”
Toward the end of our conversation, Dr. Mapstone referred to the result of diagnosis as an “ego insult,” which he described as an existential threat to a person’s notion of self. Ego insults can cause a lot of internal struggles and manifest in a variety of ways, one being anxiety. It’s important to note that care partners have also experienced an “ego insult.” As we all know, it’s not just the person diagnosed who will suffer and struggle to adapt.
Mild Cognitive Impairment (MCI)
A listener asked about mild cognitive impairment (MCI) and how quickly it might progress.
Dr. Mapstone said, “MCI is a change in cognitive function–usually memory, but not always. In Parkinson’s, MCI often relates to executive function. It’s a change in cognitive function that does not significantly impact functional capacity, meaning you’re still able to do what you need to do. You can go to the store, and you might forget an item or something like that, but it’s not really limiting your ability to live in your space.”
Dr. Mapstone continued to describe the impacts of cognitive changes by saying, “When it goes on to impact your functional capacity, meaning that you are forgetting things that are important, like to turn off the stove after you’ve used it, or to lock the doors at night and there’s safety issues…then it meets criteria for what we call dementia.”
There are relationships between MCI and dementia. Dr. Mapstone said about two-thirds of people with MCI will go on to develop cognitive impairments that impact functional capacity and therefore meets the criteria for dementia. That said, it is important to recognize that Parkinson’s Disease Dementia (PDD) is different from dementia in Alzheimer’s, where memory is the worst problem.
Dr. Mapstone further clarified that PDD manifests more as problems with executive functioning and the ability to do multi-step tasks in order or to juggle multiple things. He encourages people with this problem to try to do one task at a time.
With PDD, you also see more problems with tip of the tongue phenomena. This is the inability to find the word you are searching for. If your person with Parkinson’s experiences this, Dr. Mapstone encourages you to give them more time to find the words and not to always interject with the correct word.
MCI can stay mild or even revert depending on if there were concurrent diagnoses, such as depression or another mood disorder, which can affect cognition and could be resolved.
More Q&A with Dr. Mapstone
For the latter part of our discussion, Dr. Mapstone took questions from the audience via the webinar’s chat function.
Why does cognition fluctuate so much in my person with Parkinson’s?
Dr. Mapstone says we don’t yet understand the mechanism in the brain, but that fatigue, frustration and emotional challenges combined with medication cycles can worsen cognitive difficulties. This is also expressed in a person with Parkinson’s movement symptoms.
Is the declining capacity for creative problem-solving a sign of dementia?
Dr. Mapstone said, “People with Parkinson’s tend to have a very rigid or inflexible approach. They do things one way, and that’s how they do it. And they’re comfortable. With that it’s hard to get them out of that set. So yes, it’s very common to have problems with cognitive flexibility, the ability to think creatively or differently. And we call this perseveration, which means that they get stuck in one way of responding all the time. And sometimes that’s good because it’s adaptive.”
Dr. Mapstone also acknowledged that this type of fixed thinking can get you in trouble because the old routine might not work on a new type of problem.
How do I get my person with Parkinson’s to consider counseling?
Dr. Mapstone said it might be difficult to sway someone who is unwilling to consider counseling, and he said it is important to accept their individual choice not to do so. If they are not open to counseling, there are other options like finding a friend or sibling to confide in, or perhaps a chaplain.
Does dementia lead to apathy?
Dr. Mapstone said that apathy is often the most frustrating thing that you as a care partner might have to deal with because it appears willful and can look like they’re fighting you or just don’t care anymore. It can be very hard to see your person with Parkinson’s disease change from possibly a vibrant interactive person to someone who doesn’t want to do anything and now wants to sit around and doesn’t want to get involved.
Dr. Mapstone suggests introducing structure to help cope with apathy. For example, scheduling boxing class on Tuesday, meet the guys for lunch on Wednesday, and so on. Scheduling helps by letting both you and your person anticipate and plan. It will also help you if you create a schedule where your person is being picked up to go to events and get out of the house. It’s a way for you to cultivate a wider support network by enlisting friends.
My spouse has Parkinson’s and dementia and I’ve been taking care of him for ten years. I’m not doing well myself–feeling depressed and helpless. How do I take care of myself?
Dr. Mapstone said, “I think the first thing here is certainly an awareness of this. The fact that you can recognize this it means you’re on your way to getting yourself better. I think it’s important for you to be selfish at this point. You’re not doing your person any favors by being a martyr or just pushing through. It’s important that you take some time for yourself.”
Dr. Mapstone wrapped up his comments about this question by saying, “I am a mental health expert and I’m telling you now and giving you the freedom to get help for yourself. Please.”
How do I deal with grief and loss related to increasing dysfunction and disability?
“Grief and loss are healthy,” Dr. Mapstone said. “Those are things that you feel. These are things that are the reality of the situation, and this is a reflection of your ego insult. This is this is how you are feeling because things are being changed in your environment, in your dyad.”
He continued, “Maybe you’re not as competent as you thought you were in certain areas, or maybe your relationship has changed with your person. In my opinion, it’s part of the normal process of struggling with a monumental change that’s happening in both your lives.”
Dr. Mapstone added that these feelings are not outside of the normal realm, but if it progresses to feelings of hopelessness and despair, then you must seek help as we discussed earlier. On this point, Pat reminded us there is always light at the end of the tunnel even when things look bleakest.
Next Meetup
We gained so much from Dr. Mapstone’s insights this month, and we’re thrilled that we’ll be able to welcome him back next month for another session. Please join us on Tuesday, September 3, 2024. If you aren’t already signed up to receive meetup reminders, you can do so here, and if you can’t make it live, know that we do intend to publish the video recording and these notes as soon as possible after the session.
Additional Resources
Dr. Mark Mapstone, UC Irvine Bio
Speech, Voice, and Parkinson’s
Managing Anxiety and Depression
5 Ways to Manage Changes in Cognition
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