Coping With Parkinson’s Disease

How to manage this condition on a day-to-day basis

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Many of the symptoms of Parkinson’s disease (PD) are manageable, but it is a lifelong condition. In addition to getting treatment, there are a number of strategies you can use to cope with the illness so that you can optimize your own quality of life as well as that of your loved ones

Emotional 

Living with PD can cause a number of emotional effects, some of which can seem to completely contradict each other. Learning about these paradoxical emotions and emotional expressions can help you cope, and can help your family, friends, and coworkers understand you better.

It is important to seek professional help in the form of counseling or medication if the emotional effects of PD become a major burden for you.

Anxiety and Depression 

Being diagnosed with PD can lead to anxiety about your ability to carry out your normal routine. You may be worried that you won’t be able to take care of things the way you used to. Concerns about your family, your job, and your ability to remain independent can take a toll. 

PD can also lead to sadness and depression as you mourn the diminished control of your body. The disease itself can cause depression through its effect on the brain.

In addition, PD usually causes what is described as a flat affect, which is an expressionless face, voice, and mood. You may appear to be more depressed or uninterested than you really are. It is important that you and your loved ones are aware of this disease effect so that others won’t interpret your lack of facial expression as cold or distant. 

Anxiety and depression often coexist. You, your loved ones, your medical team, and a therapist or counselor can help identify whether you would benefit from medication, counseling, or both. 

Emotional Expressions

PD is often associated with a condition called pseudo-bulbar palsy (PSP). This is a tendency to experience sudden emotional outbursts, such as ill-timed crying or laughing.

PSP can be especially confusing to you and others if you also have a flat affect. With PSP, your mood can seem to change rapidly and out of nowhere, a situation described as emotional lability.

Discuss any unusual emotional reactions with your doctor because you may benefit from medical treatment. For many people, gaining an understanding of PSP and being able to explain it to family and friends can help reduce embarrassment about the condition. 

Hallucinations 

Auditory and visual hallucinations can occur as a side effect of some medications used to treat PD. You may hear sounds or see objects that are not there. Delusions, which are false beliefs, are far less common.

Most of the time, an awareness that the medication is the cause of the symptoms can help alleviate some of the anxiety associated with these symptoms. Your doctor can decrease your medication dose or give you a prescription for another medication if the hallucinations are bothersome or frightening. 

Behavioral Changes

Behavioral changes can occur as a side effect of some PD medications. Addictive behavior, which can manifest with gambling, excessive spending, or other unusual habits, is often surprising for people who have PD (and their families) because it may occur even in people who do not normally have addictive tendencies.

If you or someone you care about has developed behavioral changes along with PD treatment, be sure to discuss these behavioral changes with your medical team. Sometimes an adjustment in medication dose can diminish this side effect. 

It is important that you understand that your feelings are normal. Your reactions to your illness, as well as the emotional effects of the illness, are not anything to be ashamed of, and interventions can help improve some of the emotional effects of PD.

Physical

There is no question that PD produces physical challenges. The disease can slow your movements, cause tremors, and alter the way you walk, producing slow, shuffling steps. 

While many physical effects of PD can be treated with medication, decreased balance (often described as postural instability) can be among the most bothersome and persistent effects of the illness. When postural instability is a problem, exercises that are focused on challenging your balance, such as yoga, may help with building balance control. 

Off Periods and Medication Effects

One of the complications of PD is that medication effects can wear off throughout the day, leading to a re-emergence of PD symptoms, often described as off periods

The key to managing the off periods often lies in timing. Many people who have PD can observe trends in physical function throughout the day. You can keep track of your symptomatic changes throughout the day with a diary, and work with your doctor to adjust your medication schedule for optimal function during the times when you need it most. 

The medications that are used to treat PD can produce physical side effects as well. You might begin to experience writhing movements and other involuntary movements that are often described as dystonia. Often, medication adjustments can help reduce dystonia.

Many people who have PD find that getting regular exercise can help in regaining some physical control. Exercises such as dancing, martial arts, swimming, and other challenging skill-based physical activity can help build better motor control—even if you start in your 70s or later.  

Social

PD can interfere with your family, social, and work life, but it doesn’t have to. Many people who have PD continue to engage in enjoyable and productive activities throughout their whole lives. 

You many want to reach out to PD support groups in your area so that you can benefit from camaraderie, advice, and a sense of community with others who are also living with the condition. 

There are also national organizations that advocate for PD awareness and research, and these organizations can be great resources to help you find updated information about the newest treatment options for PD. They may also have information about research studies that you might be able to take part in.

Caregivers

Being the primary caregiver for a person who has PD can be difficult. The disease is manageable, yet because it is so variable, it can be hard to know what to expect. 

Be sure to ask for help in scheduling medication doses if the dosing or off periods become overwhelming. Setting timed reminders and using organizational pill containers can help with scheduling.

If you are taking the burden of responsibility due to your partner or parent’s illness, it is important that you ask friends or family members for help with tasks, such as driving, so you can take a break for your own self-care.

You may be worried about your loved one falling at home, and this can make you hesitant to leave the house. It is important that you find a way to take breaks while also staying assured that your loved one is safe.

Some families move to a home without stairs if postural instability is a problem. Others make sure to have a bedroom on the main floor to avoid frequently walking up and down stairs. 

The PD-associated emotional lability, flat affect, depression, and anxiety can also take a toll on you as a caregiver. If you can try to connect with other caregivers or with other people who have PD, you can see the effects of the disease on others besides your loved one so that you won’t take the emotional responses personally.

Practical 

With PD, there can be several day-to-day challenges. It is a slowly progressive disease, which means that the issues around driving, safety at home, and ability to work can come on slowly, giving you time to think about your options and to prepare for concerns that may come up in the future.

Day-to-Day Tasks

With PD, many people can continue to shop, cook, drive, take care of bills, and enjoy creative endeavors, such as gardening, painting, or music. You might notice that you have to slow down sometimes, but it is a good idea to continue to do at least some of the activities that you enjoy and that make you feel competent and capable.

Work and Employment

PD is characterized by an action tremor, which typically improves with movement. For this reason, many people who have PD are able to work. The disease also does not typically affect cognitive function (thinking and problem solving) in the early stages, so there are many jobs that you can continue to do if you have the condition.

However, if you must carry out intricate and rapid response physical functions at your job—if you are a crane operator, a surgeon, or a pilot, for example—you might not be able to carry out your job duties due to your PD.

Sometimes PD is deemed to be a disability that makes it impossible to do your job. Your medical team can help guide you so that you can get the right services regarding benefits.

Planning for Future Care

PD is a neurodegenerative condition, which means that it progressively worsens over the years. You may need assistance with walking, such as a cane or a walker. While it is not common, some people with PD may need a wheelchair. Learning about your resources and the financial cost of these devices ahead of time can put you and your family at ease.

If you anticipate that you might not be able to drive or climb stairs, moving to a walkable neighborhood and to a home without stairs can help you enjoy your home and surroundings if your physical abilities become more limited.

And arranging for help around the house or help with transportation can provide you and your family with peace of mind as you navigate your illness through the years.

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