NOTES FROM THE CARE PARTNER MEETUP: JANUARY 2024

19 January 2024
https://davisphinneyfoundation.org/download/1073385/?tmstv=1705595137

Some quotations in this post have been edited for length and clarity.

The Care Partner Meetup kicked off the new year on January 2 with a special guest: Jessica Barr, PA-C. Jessica is a board-certified physician assistant specializing in movement disorders at the University of Colorado Movement Disorders Center. Her connection to Parkinson’s involves more than just her medical practice, as her mother was diagnosed with Parkinson’s in 2015.  

Jessica’s background in dance was also a factor in her decision to focus on caring for people living with movement disorders. “I grew up dancing,” she explained. “Learning how the body could position in different ways was always fascinating, and learning how to help improve that was very interesting.” 

Watch the video of this month’s meetup below and sign up to join us live for future meetups by clicking here. 

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NOTES 

Written by Connie Carpenter Phinney  

We began this month’s meetup by taking a few deep breaths together before welcoming our regular panelists, Gail and Pat, both of whom are Davis Phinney Foundation Ambassadors. Gail Gitin is a former care partner who lost her husband to Parkinson’s in 2020 and continues to mentor care partners. Pat Donahoo is a schoolteacher in Las Vegas whose wife Cidney was diagnosed with Parkinson’s in 2010. Pat is a community leader in both care partners and Parkinson’s resources, as well as an avid cyclist. Polly Dawkins, the Foundation’s executive director, served as moderator of the session. This month, we welcomed special guest Jessica Barr, PA-C: a board-certified physician assistant specializing in movement disorders.

Q&A WITH JESSICA 

DOES PARKINSON’S CAUSE PERSONALITY CHANGES? 

Jessica noted that “a lot of the dopaminergic medications can affect your personality a little bit differently.” She added that dopamine agonists can be associated with obsessive-compulsive behaviors, or more impulsive behaviors, including excessive or unnecessary shopping, gambling, and hyper-sexuality.  

Jessica advised any care partner who notices impulsive or compulsive behaviors to contact their doctor/medical team as soon as possible. She explained that there have been well-documented cases of impulsive behaviors resulting in individuals who have gambled or shopped away their life savings. It’s important to immediately receive attention if you notice impulsive or compulsive behaviors. 

DO COLDS AND FLU WORSEN PARKINSON’S SYMPTOMS?

Jessica explained how Parkinson’s symptoms gradually show up, but that symptom progression can really flare up when there is an extra stressor, including an infection. “Any time your body has an infection or a stressor on it, we can see a flare-up of the Parkinson’s symptoms, and it can be the motor and the non-motor symptoms that get worse.” After an infection recedes, symptoms tend to improve. 

Jessica added that even when your loved one with Parkinson’s isn’t showing any other signs of an infection, your care team may test for common infections if there is a sudden worsening of symptoms. She noted that infection is the most common cause of acute worsening of Parkinson’s symptoms. The takeaway is to seek help when you, the care partner, observes these sudden changes. 

Other stressors–like travel–can also cause stress that worsens Parkinson’s symptoms. Jessica urged anyone traveling to build in time to adjust because the medication cycle will be off for several days. Staying with a routine and managing the stress around travel helps minimize symptom flare-ups. 

Even simple disagreements in the home with your person with Parkinson’s add stress and lead to symptom exacerbation. This may leave care partners feeling guilty. Many of us feel we have to tone down the argument or shelve the disagreement for a later date, but this can be wearing on both you and your person with Parkinson’s.  

I asked Gail and Pat if they had any advice other than to simply tone down the argument or modulate our voices. Gail said whenever she got really frustrated with her husband, he’d often gently remind her that he wasn’t doing this on purpose. It’s hard to remember that Parkinson’s can be like a third party in any discussion, but it can help to keep this in mind. Pat talked about recent travels and how he had to create a calmer and more soothing environment both on the road and back home. Being patient helps. 

WHY DO MY PERSON WITH PARKINSON’S TOES BEND UPWARD AND HURT?

This is a common Parkinson’s dystonic posturing. Dystonia is an abnormal contraction of muscle, often associated with holding a particular posture.  

The “striatal toe” is a common experience of dystonia: This is when the big toe curls or points up. This is often accompanied by the other toes curling down. This type of dystonia increases problems with balance and can be painful. Medications help and some people find relief in Botox injections to the muscles, which causes the toes to lift. Note that you must find a trained doctor to do this, and it’s generally covered by Medicare if prescribed by your doctor.

IS ANGER AND IRRITATION COMMON FOR PEOPLE WITH PARKINSON’S?

Jessica said this anger and irritation are quite common because so many with Parkinson’s suffer from increased depression and anxiety induced by the lower levels of dopamine. This may manifest as irritability. She said you also have to consider whether dementia is a factor in changing behaviors. 

We talked about how hard it is with Parkinson’s because there is no status quo. Everyone with Parkinson’s is different, and the things we hear or read or talk about will not necessarily happen to your person with Parkinson’s. But sometimes what you hear about does happen, so it’s good to listen ahead of time and try to know what might happen. This helps you be as prepared as possible. 

Pat talked about how hard it was for him to see his wife upset about her dyskinesia. When she’s angry, she takes it out on herself. Pat said his most effective method of soothing her is to rub her legs, try to calm her down, and remind her not to make things worse. He said the frustration is heartbreaking to witness.  

As a care partner, it’s always important to acknowledge how difficult it is to put yourself in your person’s shoes and feel what they feel. Take a moment to forgive yourself for the hard feelings you might develop. Don’t hold past behaviors against the person with Parkinson’s or yourself. Try to employ self-care strategies: Stop, take a deep breath, and try to reset. Remember that forgiveness is a daily process. 

Nobody likes Parkinson’s; it’s fair to hate the disease. We are thankful for medical practitioners who choose movement disorders because they know they help people feel and function better. Pat said that’s a big part of what keeps him going: knowing he can help his wife to be better. It’s also one of the reasons Jessica chose to work in the field. 

Pat’s wife, Cidney, shared some of her thoughts about dyskinesia in a webinar in 2020, which you can watch here.  

WHAT ABOUT APATHY? 

In Parkinson’s, apathy isn’t a choice; it’s part of the disease process, but it is often frustrating for care partners. Jessica said many people with Parkinson’s want to get better and want to do more, but they just can’t. It’s important to acknowledge this and not assign blame. Jessica urges us to lower expectations and be more patient. She said, “One of the biggest things with treating apathy is external motivation.” In particular, exercising and eating well together can help both of you. Setting a routine with schedules for exercise can help, too. It takes some organization to schedule rides or make time to go to the class yourself, but even that can be reinvigorating. It’s also important to know that when you can’t help, it is okay to let your person with Parkinson’s stay on the couch.  

Pat has written about apathy and he offered five useful tips in this blog post.  

IS ANESTHESIA PROBLEMATIC FOR A PERSON WITH PARKINSON’S?  

There are many variables, including where your person is in the course of their disease and how long and invasive a surgery is. Worsening of cognitive impairment is one of the biggest risks following anesthesia, but this effect should be temporary. Still, if you are considering surgery, consult with your neurology team, regardless of the surgery’s nature. They can help you understand what to watch for and they may help coordinate with the surgical team. 

WHAT SUPPORT IS BEST FOR LIGHTHEADEDNESS OR FAINTING? 

Neurogenic orthostatic hypotension (nOH) is a sudden drop in blood pressure and heart rate that occurs when shifting positions after a period of immobility. This is common for people with Parkinson’s and often occurs during the transition from sitting or lying down to standing. nOH is related to the malfunctioning of the autonomic nervous system, and it is a common cause of falls, so it needs to be treated. 

Hydration can help, but Jessica recommends working with your neurologist to manage nOH. Consult a cardiologist if you have a more complicated cardiac history.   

WHEN SHOULD WE DOWNSIZE? 

We always have many questions about the best time for downsizing, and of course, this decision should be based on many factors. I always say, “Now,” but I acknowledge it takes time to move out of a home you have been in, perhaps for 20 years or more. 

When Davis and I downsized, we also renovated our bathroom to include a “lipless” walk-in shower and grab bars for added support. If possible, you will want a home with a ground floor main bedroom.  

WHAT IS THE BEST EXERCISE ROUTINE? 

All people need to move and continue to move–regardless of whether they live with Parkinson’s. Jessica said the best routine is the one you will stick with. More specifically, some research shows that high-intensity interval training (HIIT) can slow Parkinson’s progression, but it likely isn’t for everyone. Jessica recommended minimally three bouts of exercise, three times per week, with the aim to reach 80% of your maximum heart rate. Other lower intensity modalities like yoga and tai chi are beneficial. Boxing and Pedaling for Parkinson’s are also great options.  

JESSICA’S CORE ADVICE FOR CARE PARTNERS 

As we wrapped up the meetup, Jessica offered her core advice for people with Parkinson’s: “I think the biggest thing is being patient and being kind to yourself and to the person with Parkinson’s because this is definitely a journey for sure. And you guys are all in this together. It’s not just the person with Parkinson’s. It affects the whole family.” 

Thanks for reading, and take care. 

MAKE SURE TO CHECK OUT OUR RECENTLY COMPLETED CARE PARTNER TRAINING. 

Additional Resources 

Dystonia Overview 

Davis Phinney Ambassador Database  

Care Partner Training Series 

Dopamine Agonist Overview 

Dyskinesia and OFF 

Pedaling for Parkinson’s Home Page 

Kristin Meldrum’s New Book on Exercise for Parkinson’s 

Complementary Therapies for Parkinson’s 

Parkinson’s Motor Symptoms

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