Coping With Parkinson’s Disease

Address Possible Underlying Causes

Sometimes underlying health problems, from acute infections to metabolic changes, can be linked with psychosis, says Dr. Espay. When people develop unexpected psychotic symptoms, Espay says he sometimes orders blood tests to check for infections or changes in kidney or liver function in his patients that may contribute to a change in symptoms.

Challenges You As A Caregiver Are Likely To Face

There are challenges that a person with Parkinson’s disease confronts. First, the disease can vary from day to day. There will be times when they can function almost normally and then other times when they will be very dependent. This is a natural part of the disease. But it can make a caregiver feel that the person is being unnecessarily demanding or manipulative. Keep in mind that Parkinson’s is unpredictable and each day can pose new challenges for you and your loved one.

Also, keep in mind that Parkinson’s is a progressive disorder. While medications and surgery can provide significant relief of symptoms, they do not stop the progression of the disease.

Depression is also very much a part of the disease. It is important to recognize the signs and symptoms of depression so you can help your loved one seek treatment promptly. And, if you are feeling depressed and having trouble coping, it’s just as important to get care for yourself.

Staying Active With Exercise

The majority of survey respondents living with PD use exercise as part of their treatment. Among types of exercise, walking is the most common.

• 66 percent use exercise to stay active
• 60 percent walk for exercise

Other common ways respondents stay active include:

• Stretching

• Journaling
• Reading

Watching television and playing games can also help serve as a distraction from pain or other Parkinsons symptoms.

• 22 percent binge a favorite TV show
• 11 percent use retail therapy or shopping
• 5 percent blog or write online

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Keep Your Home Well Lit

A dark environment may be associated with increased hallucinations, says Dr. Barrett. For some people, increased lighting may help, he says. However, this could also have a negative effect on sleep, so it should be approached with that in mind. After all, adequate sleep can help you feel better, he says. Talk with your doctor about adjustments that might work for you.

Other Parkinsons Disease Coping Strategies

• Don’t think about alienating your friends and family. Talk to them about your situation. You need them to help you cope.
• Dig deeper and get more information about your illness.
• Get involved in activities you enjoy.
• Occasionally, you may feel depressed. Go for a prescription for the antidepressants to lift your mood.
• Stress worsens your condition, and learning to manage it will give you a positive emotional, physical and spiritual outlook.

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Exercise And Healthy Eating

Regular exercise is particularly important in helping relieve muscle stiffness, improving your mood and relieving stress.

There are many activities you can do to help keep yourself fit, ranging from more active sports like tennis and cycling, to less strenuous activities such as walking, gardening and yoga.

You should also try to eat a balanced diet containing all the food groups to give your body the nutrition it needs to stay healthy.

How Will I Manage The Changes Caused By The Disease

You likely had plans, dream vacations or other things you wanted to accomplish in your future. You must now incorporate your condition into these projects. Although Parkinsons is a progressive disease, it progresses slowly and differently from person to person.

Take advantage of everyday that passes and continue the hobbies and activities you enjoyed. For some, the diagnosis can be the opportunity to strengthen character and discover passions and qualities they would not have found otherwise.

Turn your fear into curiosity and learn all you can about the disease. Parkinson Québec has many resources to help you better understand the disease and live with it on a daily basis. Ask your loved ones for help or reach out to available resources for support.

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Discouragement Searching For An Explanation

• In this phase, people look for some direct cause for the health problems they are experiencing.
• You might become preoccupied with asking yourself “why me?”, while searching for something or somebody to blame for the unwanted circumstances occurring in your life.

What to do

• Symptoms of depression are common in any stage of PD. In some cases, depression is an early symptom. Don’t be afraid to tell your doctor if you feel depressed.

Health Of The Care Partner

As a care partner, you are likely focused on your loved one. Yet research shows that care partners in general, not just those who care for loved ones with PD, face risks to their own physical and emotional health. This elevated risk can show up in a higher-than-average incidence of heart disease, high blood pressure and visits to the emergency room. Care partners have been shown to experience decreased immunity and sleep deprivation. Lack of sleep can lead to irritability and frustration. In addition, care partners experience higher-than-average rates of depression, anxiety and grief.

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Subgroups With Respect To Different Courses Of Pd Severity

Moreover, from an intervention or applied perspective, one might argue that a significant change in coping styles reflects a helpful or not so helpful coping style in dealing with the individual situation along the course of disease in daily life. Within the relatively healthy Low stable group, even-minded optimistic reflections, such as Humor, Wish for information and Ups and downs, appear as particularly helpful to deal with the own stable situation of PD. For the worsening subgroup, it turned out that to Compare with others may not have been so helpful when PD increased in severity over time, whereas seeking for Social support was. Within the High stable subgroup, it was helpful to Keep going in a stable but unhealthy situation. In sum, this highlights the importance for social support as the disease progresses to stay active and be able to participate in society.

Coping With A Diagnosis

When you or a family member is diagnosed with Parkinson’s disease , you will experience a range of emotions and go through several stages of adjustment to the disease. As PD progresses, bringing new challenges, you will go through many of the emotions and stages of adjustment anew. Each person experiences stages in their own order and at their own pace. Remember, everything you feel is normal.

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Preparing For Doctor’s Appointments

Patients and their families should always ensure they are prepared for a doctor’s appointment when dealing with Parkinson’s disease. With this in mind, they should note down symptoms, even if they do not seem related, as well as any recent major changes or stresses. Additionally, these notes should include all the medications the patient is taking. This must include natural supplements and vitamins as well.

Patients and their family members should also consider writing down all of the questions they have, no matter how insignificant they may seem. Some things many individuals will want to know about include what tests they will require, treatments being considered, and details on other conditions being dealt with. Many patients will also want more information about Parkinson’s disease. While patients can go alone, it is incredibly helpful to bring a family member or other loved one along for emotional support, especially where questions are concerned. They can fill in any gaps if the patient is unable to do so.

Coping With Parkinson’s Early

The following is an excerpt from the book Alter The Course. Newly Diagnosed Parkinson’s disease.

Parkinsons disease is an unexpected- and unwanted- twist and turn in your life journey. Like any journey there is uncertainty about what lies ahead, how things will change or where your life with PD will take you. Although you cannot completely control your future, certain choices you make can guide your course to set your path in the best direction.

Change is an opportunity to refocus and negotiate how lifes twists and turns will play out for you. No one can predict their future but they can lay the foundation for their future to unfold in a particular direction. Like any journey, the first step is to set your intentions and take deliberate steps toward positive action. Your diagnosis presents you with just this opportunity- to take action and choose how you will move forward.

Get the Facts- How Much and When

Think about which approach works best for you before you dive into learning about PD full steam ahead. Do you need to pace yourself? The internet is full of information, some of it good, some of it not. Be sure to seek credible sources by respected professionals and foundations. Look for information that is designed to empower, inspire and offer practical guidance rather than read like an encyclopedia of facts. If too much information is overwhelming then you may want to start with your doctor and or allow some time after the diagnosis before learning more.

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What Are The Stages To Coping With My Condition

Parkinsons disease causes recurring bouts of grief. Your life will change and you will no longer be able to continue all your activities.

These are the stages most individuals go through before accepting their diagnosis and developing new life skills. A psychologist specializing in neurodegenerative diseases can help you go through these stages more easily.

Try To Be Socially Active

Many people with Parkinsons restrict themselves from being socially active. This is a completely wrong approach. You dont have to do this. In fact, you need to be more social.

Research has shown that social interaction helps patients to boost their feelings of well-being and decrease feelings of depression.

Therefore, keep yourself busy and participate in gatherings with family and friends as much as you can. The more you engage yourself socially, the more you will feel normal.

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Patient And Public Involvement Statement

This research was done without patient involvement. Patients were not invited to comment on the study design and were not consulted to develop patient relevant outcomes or interpret the results. Patients were not invited to contribute to the writing or editing of this document for readability or accuracy.

How To Cope With Parkinsons As A Caregiver

Research from the National Alliance for Caregiving shows that when caregivers are asked what they want, the majority respond saying they want information about coping with being a caregiver. This information takes several forms, including knowledge about Parkinsons disease , comfort with the caregiving role and managing stress.

The following tips can help you cope:

• Forgive yourself for not being perfect. From the day your loved one was diagnosed your world has been turned upside down. Your daily routine will change, as may your personal standards of housekeeping and other tasks. Accept your own humanity.
• Acknowledge your right to feel emotionally off-balance. Recognize the hidden grief component of your anger, anxiety, guilt and depression. Expect adaptation to, but not resolution of, your grief. Accept it and seek out someone who understands it.
• Determine your limits. What is your comfort level providing care? Some caregivers feel they can provide care at home as long as others in the family can put up with the disruptions.
• Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.
• Seek out joy in your relationship with your loved one. Your hands-on duties, such as dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.

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Parkinsons Disease: Symptoms Stages And Treatment

Parkinson’s disease usually begins after age 60, gradually progressing over the years. Some people can have early-onset Parkinson’s disease, starting in their 30s or 40s. It is primarily a movement disorder characterized by resting tremors and slowness and stiffness of movement.

In the late stages of the disease, Parkinson’s dementia can develop. But most people who have Parkinson’s disease do not develop dementia as a part of the condition.

Stability Of Coping Styles Over Time

Three years after baseline, the role of the different coping styles remained largely the same at first glance, though there was a range suggesting that some coping styles changed less than others. Using Humor as a coping style is the most stable of all, and is arguably a disposition that is deeply embedded in the personality . These findings thus seem to support a dispositional theory of coping and could be interpreted in line with the only previous longitudinal study that has examined coping in relation to progression of PD . According to this theory, a repertoire of coping strategies is developed and consolidated through early life and, like personality, it remains relatively stable from adulthood and onwards , although this would not hold for an empirical proof from a more differentiated perspective. Thus, there is evidence in the literature that if confronted with a new situation, such as the progression of a chronic disease, coping strategies that do not appear helpful any longer may be changed .

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Coping Skills For Care Partners

A diagnosis of Parkinsons disease is a life-changing experience not only for the person with PD, but also for the spouse, child, other family member or friend who becomes the persons primary care partner. Care partners take on many different responsibilities from accompanying a loved one on doctors visits and grocery shopping to more demanding ones like providing physical care. At the same time, you may be working, raising children, caring for grandchildren or coping with your own health or personal issues.

Because PD progresses slowly, the care partners role can last for decades. This journey can bring rewards, but it can also bring difficult times. It is important for every care partner to remember that taking care of oneself is not the same as being selfish. By renewing your own energy and staying healthy, you can better support your loved one who lives with PD.

Choose The Support System That Works For You

Getting support is necessary throughout the diagnosis acceptance process and throughout the course of the disease. Choosing who to talk to and lean on for support is an important part of the process and there is no right or wrong way of doing so.

Joining a support group with members who you identify with in age, stage of the condition and experience can be crucial. Some people may prefer more personal resources whereas others prefer help and support lines.

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Use Assistive Devices For Self

Over time, Parkinsons can make your self-care tasks difficult and so you should get ready for that.

For example, your body will be stiffed in the morning and therefore getting started your day will be slower than normal. Performing tasks like taking a shower, getting dressed, and taking shoes on, will take more time than usual.

Hand tremor is another problem that you will experience time to time. It is especially problematic in eating food. Similarly, Parkinsons can also affect the way you walk. Your walk will be slower than normal and sometimes stepping forward can be hard.

Using assistive devices can help you to perform these self-care tasks easily. There are many products available on the market that are specially designed for Parkinsons patients. Some of the most effective products that you may need include tremor spoon, weighted utensils, and walking stick.

Disclaimer: The information shared here should not be taken as medical advice. The opinions presented here are not intended to treat any health conditions. For your specific medical problem, consult with your health care provider.

Limitations And Future Perspectives

As in all longitudinal studies, we had a drop-out that might induce a bias. We have previously reported that those that were lost to follow-up were significantly older and had a longer PD duration . Nevertheless, our sample still represents the full span of disease severity .

It also needs to be noted that the Low stable group was significantly younger than the other two groups, and we cannot exclude that some of the differences in coping styles between the groups are related to age. However, previous research that used the CPS in older adults without specifically having any chronic diseases found, inter alia, that the coping styles seeking Social support and Comparison with others were notably not significantly related to age . Thus, our finding that these two styles change the most over time in the Worsening group is most likely related to the change in disease severity rather than to age differences or ageing. Moreover, there was no difference in age between the Worsening and the High stable groups, which would further support our interpretation of differentiated findings with respect to disease course.

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Emotional Aspects Of Parkinsons

It is important to examine the various emotions that a person living with Parkinsons disease can undergo in living daily with the condition. The emotional factors that affect your loved one can be both internal and external. Some changes that occur can be directly due to the disease process, which causes an alteration in brain chemistry. Other emotional changes are influenced by external factors and the persons reaction to those factors.

Having a chronic neurological condition is stressful, and people react to stress in different ways. Some see it as a challenge and others see it as a problem. Parkinsons disease has a significant impact on family and friends and can create many emotions. These emotions include:

DENIAL/DISBELIEF

Denial, a feeling of shock and disbelief is a common reaction, especially at the time of initial diagnosis and early in the disease process. Since PD can have a subtle onset before an actual diagnosis is made, people often attribute symptoms to other causes. People also sometimes report a general feeling of uneasiness or an anxious, depressed feeling prior to diagnosis. When a diagnosis is finally made, it can come partially as a relief, but there is often shock and fear of the future.

DEPRESSION

Depression is one of the most common reactions to Parkinsons disease, occurring in roughly 50 percent of clients. Some doctors feel that depression may actually be part of the disease process. PD medications can also cause depression in some patients.