[Webinar Recording] July 2024 Living With Parkinson’s Meetup

TEMPERATURE REGULATION AND PARKINSON’S

Several Parkinson’s non-motor symptoms are related to Parkinson’s effects on the body’s autonomic nervous system. As the name suggests, your autonomic nervous system controls functions your body “automatically” does, like blood pressure regulation and digestion. Temperature regulation falls into this category as well, and when this function is hampered, your body isn’t able to cool itself down or warm itself up the way it used to. This can lead to excessive sweating, dehydration, lingering cold in your hands and feet, and more.

When your body struggles to regulate your internal temperature, it can feel more than uncomfortable. It can be embarrassing and worrisome, and in the case of dehydration, it can have significant health consequences.

The good news is that there are steps you can take to cool off (or warm up) even if temperature regulation is a challenge you face. Here is some advice our panelists offered, much of which focuses on taking action to stay cool in hot weather:

• Make use of portable hand fans and spray bottle fans.
• Be aware of how heat can drain your energy. Rest and refuel often.
• Schedule outdoor time for the coolest times of the day, and make conscious choices about outdoor activities.
• Stay hydrated! Your sense of thirst can be affected by Parkinson’s, so take steps to ensure you’re drinking water regularly.
• Many people with Parkinson’s–especially those with perimenopause or menopause symptoms–experience night sweats. For some of our panelists, switching to extended-release carbidopa/levodopa helps manage the symptom.

PAIN AND PARKINSON’S

Studies show that 60 to 83% of people with Parkinson’s report experiencing pain, and chronic pain is twice as common in people living with Parkinson’s than in those without Parkinson’s. A poll taken during this month’s meetup demonstrated the prevalence of pain as a common symptom, with many in the audience sharing that it is a symptom that significantly impacts their daily lives.

Several different types of pain are associated with Parkinson’s, and effective management requires coordination with your care team and implementation of pharmacological and non-pharmacological treatments. Recognizing which kind of pain you’re experiencing can help you optimize treatment. It can also help to pay attention to what activities or times of day make your pain better or worse.

The panelists shared their experiences with Parkinson’s-related pain and discussed the differences between persistent, low-grade pain and acute pain, which can be so intense that it “stops you in your tracks.” Multiple panelists advised that you can–and should–manage these different types of pain differently. Here are some ways they do so:

• For some people, dry-needling can help relieve pain from dystonia, an involuntary muscle contraction in which the brain tells the muscles to tighten and move even though you don’t want them to.
• Explore a variety of complementary therapies. Remember that Parkinson’s is personal, and a therapy that works for someone else might not work for you. Be patient with yourself as you try new treatments. Pay attention to how your body feels–and how your pain level varies–during and after different therapies. Examples of therapies that have helped our panelists manage pain include acupuncture, mindfulness, yoga, massage, and Tai Chi.
• Listen to your body and find what feels good for you.
• Remember that your mind and body both change as you live with Parkinson’s, and a therapy that once helped you manage pain may not work anymore. The flip-side is also true: a treatment that once had no positive impact may prove beneficial at another time.
• While some complementary therapies designed to manage pain are expensive, some may be covered by insurance. Talk with your care team to see what options are available for you based on your medical plan and your current symptoms.

SLEEP AND FATIGUE

Among our audience, panelists, and the wider Parkinson’s community, sleep problems and fatigue are among the most burdensome non-motor symptoms. Parkinson’s can impact sleep in multiple ways. It may cause you to have trouble falling or staying asleep at night, and it may also cause excessive sleepiness during the day. Fatigue, which is not the same as sleepiness, is also common for people with Parkinson’s.

People with Parkinson’s typically experience some combination of insomnia (trouble falling asleep) and sleep fragmentation (waking up frequently during the night). Studies have shown people with Parkinson’s have different sleep patterns and that their deepest periods of sleep during the night are shorter and interrupted more often than people without Parkinson’s. Medications can wear off during the night and make sleep disturbances worse by causing painful stiffness, difficulty moving in bed, or the return of other symptoms.

What can you do to manage these kinds of sleep issues? Here’s what our panelists advise:

• The timing of medication doses is important for sleep. You may need to experiment with the time you take your final dose of the day. Talk with your Parkinson’s provider about how adjusting the times you take your medications may impact your sleep.
• Box breathing can help calm your brain and body and help you fall asleep. Typical box breathing involves inhaling for four seconds, holding your breath for four seconds, exhaling for four seconds, and waiting for four seconds before breathing in again.
• For some people, melatonin is a beneficial sleep aid.
• Talk with your providers about pharmaceutical treatment options and whether your current medications may be making your sleep problems worse.
• Practice good sleep hygiene, especially minimizing screen time before bed.
• Exercise can help you sleep better at night and give you an energy boost during the day.
• Avoid processed foods, make your energy levels crash. Explore plant-based ways of eating that can help manage daytime fatigue.
• Talk with your care partners and family to find solutions that help you all get the sleep you need.
• If you experience neurogenic orthostatic hypotension (nOH), as many people with Parkinson’s do, take extra care to get out of bed slowly. Neurogenic orthostatic hypotension involves a drop in blood pressure when you change positions, and it is most common when standing up.

BLADDER AND BOWEL CHALLENGES

Like sleep, challenges related to Parkinson’s impacts on your bowel and bladder are extremely common among people with Parkinson’s. The discussion during the meetup centered around bladder control issues, as many people with Parkinson’s have trouble with bladder overactivity that causes urinary urgency, frequency, and incontinence (unintentional leaking).

For some of our panelists, the sense of urgency–especially at night–is the biggest challenge. Here are some of their tips for managing this common symptom:

• Keep in mind that because of Parkinson’s, your brain may not be receiving messages of urgency the way it used to. Do not wait to go to the bathroom until it becomes an emergency. Try using the bathroom on a set schedule, like every two hours.
• Normalize talking about bowel and bladder issues, because they can be very impactful on your quality of life. Tell your providers what you’re experiencing. There are a variety of exercises and, if needed, pharmaceutical treatments that can help.
• Take care to stay hydrated, even if it makes you worry about needing to use the bathroom often. Dehydration brings with it a host of other complications, so make sure you’re drinking adequate amounts of water each day.
• If you often need to get up at night to use the bathroom, consider using amber-colored, motion-sensing lights to guide your way. Comparted to a whiter light bulb, an amber-colored light may be less disruptive to your ability to fall back asleep.
• Pelvic floor therapy can be beneficial in managing an array of bladder challenges.

No matter what non-motor symptoms you may experience, remember to speak up about them. Advocate for yourself during appointments and wellness visits, and connect with others, like our Ambassadors, who know what you’re going through.

NEXT MEETUP

We hope you’ll join us for our next meetup on August 15, 2024!

The panelists always welcome your questions. Please send them using this form or by emailing [email protected].

ADDITIONAL RESOURCES

A Primer on Pain and Parkinson’s

[Podcast] Managing Pain in Parkinson’s

[Video] Box Breathing

The Victory Summit® Virtual Event: Sleep and Parkinson’s

A Primer on Sleep and Parkinson’s

[Webinar] Pelvic Health and Parkinson’s

Breath Work for Parkinson’s

Insight Timer

Fox Insight

Amber motion-sensor light