[Webinar Recording] Live Well Today: Non-Motor Symptoms of Advanced Parkinson’s

SHOW NOTES

Regardless of how long you’ve been living with Parkinson’s, your experience is complex and personalized. As you age and your Parkinson’s advances, you will experience changes in your symptoms. Your medications, dosing schedules, and other therapies will be updated. Your home environment may be adapted. But one thing remains constant–the importance of seeking out the care you need and taking action to live well.

As Parkinson’s advances, remember too that Parkinson’s is not just a movement disorder. Many people report that the non-motor symptoms actually have a greater impact. The most important thing to know about non-motor symptoms is that for every non-motor symptom you experience, there is likely someone who can help you manage it.

With this in mind, be sure you speak up about the symptoms that are most impactful in your life, and ask for referrals if your primary provider isn’t able to offer the particular kind of care you need.

Cognitive Challenges as Parkinson’s Advances

Parkinson’s can slow down your ability to think and process information. It alters many regions of the brain and this can lead to impairments in executive function, language, and memory. Parkinson’s can also cause visuospatial changes and neuropsychiatric symptoms, like delusions and hallucinations.

Executive Function Changes

Challenges related to executive function often increase as Parkinson’s progresses, though the changes are typically gradual. You may find your decision-making skills and problem solving abilities may seem less sharp. Multi-step or complex tasks may become more difficult, and you may find it challenging to follow directions or remember names.

Visuospatial Changes

Visuospatial changes can increase as Parkinson’s progresses. These changes relate to how people see and and understand the world around them with regard to spatial relationships. Visuospatial changes may mean you lose your sense of direction more easily. It can also affect your gait and can increase your risk of falls by worsening your depth perception.

Neuropsychiatric Changes

Neuropsychiatric symptoms also grow more common as Parkinson’s progresses. These are often lumped into a term called Parkinson’s Disease Psychosis (PDD), a non-motor symptom that causes people to experience hallucinations and/or delusions. Approximately 50% of all people living with Parkinson’s will experience some form of hallucinations or delusions, and the longer someone lives with Parkinson’s, the greater the likelihood they’ll experience them.

• A hallucination is something someone sees, hears, smells, tastes or feels that’s not actually there. Essentially, they’re tricks that the brain plays on the senses.
• Delusions, which are less common than hallucinations in Parkinson’s, are fixed beliefs about things that aren’t true; they often manifest as paranoia or suspicion.

It is important to remember that in Parkinson’s cognitive changes–like other changing symptoms–are subtle. If you or your loved one experiences a cognitive episode that comes on suddenly, you should reach out immediately to your physician. For example, if you’ve never had hallucinations and all of the sudden have one, it’s unlikely that the hallucination was caused by Parkinson’s. It could, however, be caused by a serious medical condition like an infection, so it’s essential that you notify your physician right away.

How to Manage Advancing Cognitive Changes

Although changes in cognition are common as Parkinson’s progresses, there are several strategies you can employ to help manage these symptoms and continue living well. Dr. Fleisher broke these strategies down into two categories: non-medication-related and medication-focused.

Non-medication strategies

• Exercise, exercise, exercise. Any type of aerobic exercise may help slow down your Parkinson’s progression and help manage symptoms. Find a mode of exercise you like and that keeps you motivated, and make it a part of your weekly routine.
• Social isolation and loneliness can worsen symptoms, so it is critical that you find ways to stay connected to your loved ones and your community. If you are struggling to find a Parkinson’s group near you, reach out to a Davis Phinney Foundation Ambassador, who can help you find new friends who truly understand what you are going through.
• A whole-foods, plant-based diet (like the MIND Diet) can provide numerous benefits for people with Parkinson’s. Numerous studies have explored the eating plan’s effects on aging and cognitive function, including a systematic review published in Nutrients in 2017 that found that the Mediterranean diet “could play a major role in cognitive health and risk of Alzheimer’s disease and dementia.” Since cognitive changes are common as Parkinson’s progresses, choosing foods that benefit your brain and can slow cognitive decline is one way to influence your Parkinson’s in a positive way.
• Occupational therapy can help address several cognitive symptoms that become common as Parkinson’s advances. Dr. Fleisher highlighted driving as an example: as your Parkinson’s progresses, driving can become a concern due to impacts on your concentration, attention, visuospatial awareness, reaction time, and more. This does not necessarily mean you need to stop driving, but you should be aware of possible challenges and seek out an occupational therapist who can conduct a driving evaluation and offer advice to keep you safe on the road. Occupational therapists can help you live well with Parkinson’s in many other ways as well.

Medication strategies

• Reassess your drug regimen. Dr. Fleisher said the first thing to explore when it comes to medication is what you’re taking that you may no longer need. Don’t let your list of medications all into the “set it and forget it” mindset, she said. Instead, reexamine (with the help of your care team) the medications and dosages you’re on to see if they still belong on your list.
• As Parkinson’s progresses, it is also important to do new risk/benefit analyses for your meds (including any over-the-counter medications you take) to be sure all drugs are not doing more harm than good. For example, Dr. Fleisher said that taking medications like Benadryl or Tylenol PM on a regular basis can worsen cognitive symptoms and can increase your risk of dementia, so exercise caution if these are on your treatment list.
• Steer clear of over-the-counter memory-boosting supplements. Unlike pharmaceutical drug products, dietary supplements do not undergo FDA review and approval for safety and effectiveness. The FDA also does not approve the labeling on supplements. This means that some supplements may not contain the ingredients listed on their labels, or they may contain those ingredients in amounts other than what is listed. It also means companies can make health claims that are not based on human clinical trials. Rather than spending money on supplements that promise to boost your memory and thinking, Dr. Fleisher said, “take that money and spend it on a gym membership, spend it on walking shoes, spend it on going out to coffee with a good friend.”

Apathy as Parkinson’s Advances

Apathy, a common Parkinson’s non-motor symptoms, is a loss of motivation, desire, and interest. Apathy often goes hand-in-hand with cognitive decline in people with Parkinson’s. It can not only affect your outlook on life but also how well you manage your Parkinson’s. For example, if you lose the incentive to take your medicine, your motor symptoms may worsen. If you lose the desire to exercise, work on hobbies, or attend social engagements, you can experience social isolation and loneliness. Apathy can also have a significant impact on your care partner and family.

How to Manage Apathy 

Dr. Fleisher said that although there is no magic answer for managing apathy, there are some strategies that you or your loved ones can use to help.

• Create an individualized daily schedule and commit to doing at least three things from your schedule each day. “Doing stuff–even though you don’t want to do stuff–is how you fight apathy,” Dr. Fleisher said.
• Make sure exercise is one of the three activities you (or your loved one) accomplish from their daily schedule. Exercise can help boost mood and minimize apathy, and often, once you get started, you’ll find that you are enjoying the activity.
• Talk with your care team. If you or your care partner notice that you’re experiencing apathy, talk with your physicians and ask for a referral to a mental health provider (a psychiatrist, psychologist, therapist, or social workers) if necessary. Your physicians may be able to adjust your medication regimen in ways that can help manage apathy, and therapy may also prove to be a powerful treatment.

“When motivation fails you, discipline is what saves you.” –Dr. Fleisher

Fatigue as Parkinson’s Advances

For many people with Parkinson’s, regardless of how long they have been living with it, sleep is an immense challenge. As Parkinson’s progresses, it can become even more so, and one result is increasing fatigue.

Fatigue is when people feel weary, exhausted, and low on energy. If you experience frequent fatigue, it can have significant impacts on your quality of life. Fortunately, Dr. Fleisher said, there are actions you can take to help minimize fatigue, even as your Parkinson’s progresses.

• Assess (and improve) your sleep. Try to determine whether your fatigue is an outcome of sleep challenges. Ask yourself, How is your sleep? How is your sleep hygiene? Do you have REM sleep disorder or sleep apnea? If you find that your fatigue is likely due to poor sleep, explore strategies that can help.
• It may seem counterintuitive to get moving if you’re feeling fatigued; however, the right kind and the right amount of exercise can significantly reduce fatigue. Sometimes just getting out the door for a walk in the fresh air can reduce fatigue.
• Connect with others. Connecting with others in a positive way has the potential to not only make you feel supported and encouraged and loved, but it may very well give you the exact bump in energy that you need.

Bladder and Bowel Changes in Advanced Parkinson’s

Two of the most common non-motor symptoms in Parkinson’s are bowel and urinary dysfunction. Like many other symptoms, these can worsen as Parkinson’s progresses, especially if left unaddressed. Recognizing and discovering how you can best manage your bowel and urinary symptoms is critical for learning to live well with advancing Parkinson’s.

Urinary Challenges

In Parkinson’s, the brain’s control of the urinary sphincter can become disrupted, leading to difficulty holding urine. This can manifest as urgency, frequency, incontinence (the accidental or involuntary loss of control of urine) or nocturia, the need to get up multiple times during the night to use the toilet. Dr. Fleisher addresses these challenges and offered the following advice for managing urinary symptoms:

• Taper off your liquids before bed. Dr. Fleisher stressed that it’s important not to get dehydrated, but said it can help to taper off your beverage consumption in the last three hours of your day. Front load your liquids earlier in the day to be sure you stay hydrated.
• Embrace “double voiding.” Before bed, try to empty your bladder. Then go through your bedtime routines (put on your pajamas, brush your teeth, wash your face, etc.). Then, once more try to empty your bladder, even if you don’t think you need to. This is “muscle training” for your bladder and can help improve urinary symptoms.
• Explore adaptations. using products like a commode or handheld urinal can make urinating during the night more convenient while also reducing the risk of falls. Dr. Fleisher also said that to minimize fall risk at night, you should install motion-sensitive nightlights that can light your way from your bed to your bathroom.
• Additional adaptations like absorbency pads and bed protectors can help reduce the soiling of clothing and furniture. An occupational therapist can offer specific recommendations for safe bathroom and hygiene techniques based on your symptoms and preferences.

Advancing Parkinson’s and the Gut

Parkinson’s can really slow down the gut, Dr. Fleisher said. As many as 80% of people with Parkinson’s suffer from constipation, which is defined as fewer than three bowel movements per week. Constipation is burdensome for people with Parkinson’s not only because it is physically uncomfortable but also because it can greatly reduce the efficacy of many Parkinson’s medications.

Because your gut typically becomes even more sluggish as Parkinson’s progresses, Dr. Fleisher said that people with advanced Parkinson’s often need to be taking action everyday to help keep their bowels regular. Below are the strategies she shared:

• Stay hydrated. Increasing fluid consumption can help decrease symptoms of constipation. Doctors recommend aiming for 40-64 ounces of water per day, which is about 5-8 glasses. Talk to your providers about whether those recommendations are suitable for you.
• (Yes, again!) A daily exercise routine is another important part of keeping your gastrointestinal tract healthy and moving. Different forms of exercise help manage constipation in different ways. Aerobic exercise increases your heart rate and gets your blood pumping quickly, stimulating the intestinal muscles. This can help the muscles contract, which in turn helps move stools more quickly. Exercises like yoga can help manage constipation as well. Some poses, such as downward-facing dog and cat-cow, increase blood flow to the digestive tract and, like aerobic exercise, help to stimulate intestinal contractions.
• Increase your fiber intake. Dietary fiber—non-digestible carbohydrates found in all plant foods, including fruits, vegetables, grains, nuts, and seeds—is critical for gut health. It consists of insoluble and soluble fiber, which work together to make your stools larger, softer, and capable of passing smoothly through your bowels. Dr. Fleisher recommended that you try to get your fiber from whole foods instead of supplements, which typically do not provide the variety of vitamins, minerals, and other beneficial nutrients that foods do.Two high-fiber recipes that Dr. Fleisher shared during the webinar are below:
  • “Rancho recipe”: Mix equal parts prune juice, apple sauce, and bran together. Store in the refrigerator (or freeze in ice cube trays). Begin my taking 1-2 tablespoons each night, and add additional tablespoons as needed.
  • Senna tea puree: Steep dried fruit in Senna tea, then blend this mixture with some brown sugar and lemon juice. Store in the refrigerator (or freeze in ice cube trays).
• Talk to your physician about laxative options. Dr. Fleisher noted that Miralax (restoralax) is the safest option and one that will not stop working over time.
• Purchase a toilet stool. Modifying your toileting posture can help reduce straining. Toilet stools, like the Squatty Potty®, allow you to elevate your feet and position your pelvis in a more ideal position.

PERSEVERE: Managing Advanced Parkinson’s as a Care Partner

Dr. Fleisher and her team have been working for the past 10 years to better understand how best to help people with Parkinson’s who are experiencing progressing cognitive changes, as well as how to help their care partners and caregivers. One way they are doing so is through the PERSEVERE study.

PERSEVERE, a national study funded by the National Institutes of Health, is led by Dr. Fleisher and is testing an educational program for family caregivers of people with Parkinson’s with cognitive impairment, Parkinson’s Disease Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia. PERSEVERE will test whether a disease-specific, caregiver-centered educational intervention improves caregiver knowledge, confidence, strain, and health outcomes– and whether it helps people living with Parkinson’s Disease Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia as well.

Live Well with Advancing Parkinson’s

Living with and treating advanced Parkinson’s is challenging. As highlighted during this webinar conversation, however, there are several steps you can take to make sure you are prepared to live well with Parkinson’s, no matter the stage. For more advice on living well with advanced Parkinson’s, explore our resources here.

Additional Resources  

Advanced Parkinson’s: Symptoms, Complications, and Care Strategies

Exercise and Parkinson’s

Social Capital and the Value of Relationships in Parkinson’s

Nutrition, Hydration, and Parkinson’s

Parkinson’s Care Partner Resources: My Person Is in Advanced Stages

Punding: Is that the same as OCD?

The Science of Parkinson’s Constipation

Tips for Alleviating Bowel & Urinary Dysfunction with Parkinson’s