Coping and Living Well with PD

Everyone copes with PD differently. Below are some challenges that the Parkinson's Foundation addresses in their guide: Living Your Best Life: A Guide to Parkinson's Disease and some tips to help with coping.

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• Unpredictability: Parkinson's is unpredictable. Symptoms can change from day to day and even over the course of a single day. People with PD often say the unpredictability is one of the hardest aspects of the disease to manage. Work on getting comfortable with uncertainty. You may need to find ways of making plans or, as many people with PD share, learn to "go with the flow" depending on how you feel on a given day.

• Sense of Control: Human nature is to want to feel in control - of our body, decisions, plans and the future. It is not easy to remind ourselves that none of us know what the future holds. Take back control! There are plenty of things you can take ownership of - your exercise routine, how you think about PD, and your attitude throughout the day. It might not happen overnight, but every step toward self-empowerment is important.

• Independence: Like our need to feel in control, it is normal to want to feel that we can operate self-reliantly. We are taught from the time we are children to learn to function independently in the world. As abilities change during the progression of PD, people may need to ask for and accept help. People with PD frequently share worries of burdening their families. Remind yourself that these emotions and fears are normal and common. Reflect on what independence means to you. Share these thoughts with your loved ones. Consider ways you can still maintain a sense of independence while also being uplifted through the support and assistance of those around you.

• Lifestyle: We all become used to our lifestyles; whether it's the activities we enjoy, those we excel at, or the time it takes to perform specific tasks. Integrating medication and exercise programs, coupled with your unique set of symptoms, may affect your routine, or change how you participate in certain activities. Reconfigure your lifestyle. Rather than cutting out the things that are hard, adjust.

• Roles: As you adjust to life with PD (and the normal aging process), your roles within your household and community may shift, making physical and lifestyle change necessary. You may decide to leave the workforce. You may cut back on driving long distances or opt to stop driving altogether. You may need to ask your partner to help you with things you've done throughout your relationship, such as paying the bills or cooking. If you have done something one way for many years or your identity is tied to a certain role, changing these roles can be difficult. Create new roles. If you retire sooner than you would have liked, look for volunteer opportunities that are less demanding but still fulfilling. If you no longer have the extended family over for regular meals, can you organize a regular family walk in the park instead?

• Identity: How you feel in your body and how you have always viewed your health are important to how to see yourself and the world. It is not always easy to incorporate a label, such as "someone with Parkinson's" into your sense of self. Reflect on your identity. As things change, it is an opportunity to look at things in new ways. Set aside time to intentionally take stock of the things that you like about yourself, the things you have accomplished, and how you'd like to see yourself moving forward.

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We share these commonly expressed coping challenges not to bring you down or make you fearful. Rather, we want you to know that if you find yourself confronting these challenges, (and you may not,) they are a normal part of going through any type of health and aging-related transition. Most importantly, you are not alone. You are entitled to recognize the changes and the losses, and to even grieve over them if you need to, but we also want to highlight the importance of adopting and finding healthy coping skills as part of your journey with PD.

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Adapting to Life with Parkinson's

Living with a chronic and progressive disease like PD is no small feat. How you experience and react to life with Parkinson's is normal and unique to you. We hope you feel empowered knowing that how you choose to live with PD is something that is in your control. PD does not have to stop anyone from living a long, fulfilling, joyous life - it just takes a willingness to adapt to changes and challenges as they arise. With the right adjustment and assistance, you do not have to give up important activities of your lifestyle.

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Tips for Healthy and Effective Coping with PD

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• Try to have both a hopeful and realistic attitude: While you should give yourself permission and space to feel sad or overwhelmed at times, try to balance that with putting energy into empowering yourself and finding optimism. Try to let go of what may not be working for you anymore and set small, realistic goals that will feel good to accomplish.

• Use humor: Life is too short to not laugh at yourself, even in sad or hard situations. It may even open you up to viewing something in a different light.

• Don't let your life revolve around PD, but do not deny or avoid it either: This can be a delicate balance, but there is space between the two extremes. Find time where you are focused on addressing your PD and time where you can immerse yourself in the other aspects of who you are. It is possible to incorporate PD into your identity without letting it define you.

• Continue to participate in enjoyable, meaningful activities: Even if you need to modify them instead of getting discouraged and giving things up as they become harder to do. If you find yourself losing interest in hobbies that you used to enjoy or are no longer finding joy in, inform a loved one or someone on your healthcare team because this can be a sign of depression or apathy, both common symptoms of PD that can be addressed.

• Be your own advocate:  You understand your experience with PD better than anyone else. Speak up for your needs and beliefs in a constructive way. You may need to remind people that they can direct questions to you if you're finding that they are turning to your care partner to ask about how you are doing. You can share with your partner that you appreciate when they give you the time you need to respond.

• Be kind to yourself: Try to not hold on to judgements of your symptoms or what you think you should have done differently in the past. You are doing the best you can. You have never been faced with this situation before and you are reacting to it and giving it the best you can, given the circumstances. Being kind also means cultivating patience with yourself - to get through a task at your own pace and to give yourself space and time to sit with your feelings and experiences around PD.

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This is all a process. Effective coping looks different for everyone and changes over time. Sometimes chronic and progressive diseases leave people feeling helpless at times, but most people with PD, especially after digesting the diagnosis, share that they surprised themselves with their resilience and were able to establish a "new normal." It is then that there are opportunities to make meaning out of the PD journey.

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How you experience PD and adjust your life to meet your needs will most likely evolve over time. You can intentionally decide to make meaning out of this experience and find purpose in it. Consider what you are most grateful for and reflect on how you can continuously strive for improvement and show up for yourself and those you love. Like any curveball that life may throw you, there is much personal growth and resilience that can be discovered in living with PD.

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Living Well with PD

From innovative new treatments and increasing awareness of exercise's neurological benefits to encouraging advocacy initiatives, the Parkinson's field is rapidly changing for the better. You don't have to wait for the future to begin living well with Parkinson's. Begin today. Here's what you can do, starting right now, to live well with Parkinson's:

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• Listen: Pay attention to your body and report changes to your healthcare team. Listen also to family and friends who may see changes in you that you don't notice.

• Think holistically: Every part of you is connected to and influenced by the other parts of you; so, it is important to address Parkinson's through the whole picture of lifestyle, nutrition, exercise, stress management, relationships, and personal and spiritual care and growth.

• Be informed: Learn how personal and lifestyle habits can impact your Parkinson's symptoms. The more you know, the more empowered you'll feel to form useful habits to minimize your symptoms.

• Be prepared: Organize your healthcare documents and other information important to your medical team. Prepare for your medical appointments to get the best results from your time with your physicians.

• Be your own best advocate: Ask for a referral to a rehabilitation therapist if you haven't received one. Talk with your health care team about your goals and concerns. Make them aware of areas you want to improve. If you seek treatment early and are specific about symptoms or problems that are frustrating, you'll help your physician develop the most effective treatment plan for you.

• Prioritize the symptoms you can change: This may mean taking medicines on time to limit symptoms or beginning rehabilitative therapy to improve posture or the volume of your voice. It may mean starting or renewing your commitment to daily exercise and may also include changing your lifestyle to promote overall health. You can't change that you have Parkinson's, but you can absolutely change how you live with it.

• Learn to live with the symptoms you can't change: Although a combination of medications, complementary therapies, and lifestyle changes will help you manage Parkinson's symptoms, symptoms will still show up in different ways in your life. Start to learn different ways to live with the reality of symptoms as you manage them or ways to manage those symptoms that may be less responsive to the various therapies we've mentioned. For instance, if a bothersome tremor doesn't always respond to medications, try techniques, and reduce stress as other ways to help manage tremor and explore additional ways to minimize stressors that worsen other symptoms.

• Be engaged: Seek out support from people with whom you feel comfortable sharing your thoughts and concerns, such as family members, friends, or individuals from church or work. Support groups can be helpful, as are group exercise classes and gatherings with other people living with Parkinson's who encourage and inspire you.

• Learn about clinical research trials that may be available to people living with Parkinson's: Many researchers seek to understand the impact medicines have on people in the early stages of Parkinson's before any other medicine has been started, and they are always looking for participants. Another especially important area of research is the study of neuroprotective therapies that can slow or potentially even stop the progression of Parkinson's. While participating in a research trial is not for everyone, you may be empowered by participating in the latest research and by potentially advancing the science of Parkinson's for the greater community. Click here to learn more about clinical trials open in Alabama. Also try ClinicalTrials.gov and FoxTrialFinder.org.

• Stay positive: A positive attitude focuses on what you can do, not what you can't. It fosters hope, If you're having a bad day, recall at least one victory you've had that day and know that tomorrow will bring another opportunity to live well.

• Keep learning: New information about Parkinson's research, treatments, and living well is being released all the time. Come back to this website often to learn even more about Parkinson's throughout the journey.

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We know those three life-changing words - "You have Parkinson's" doesn't have to mean giving up on the kind of life you imagined for yourself. Remember: your life's design plan is yours to make. Design it to be the best it can be. Stay active, stay engaged, stay informed, stay in control of your destiny. And remember that you hold the power you need to live well.

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Support Groups

Support groups can provide a place to share similar experiences and tips for living with Parkinson's. Some groups provide general support, while others focus on special populations, such as those living with Young Onset PD or care partners. Support groups also provide educational programs and organize members to raise awareness on a local level.

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Many people with PD and their care partners find comfort in meeting others who are also affected by PD. Support groups are not for everyone, and some people avoid them due to a fear of "seeing people who are more advanced." It can be helpful to call the leader of the group and ask about who typically attends to see if they are in the same age range and stage as you are.

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After attending at least one or two support group meetings, many people with PD find themselves relieved and validated to be in the company of people with whom they can relate. You may be surprised to learn that you are not alone in the emotions or challenges you have experienced with PD. Support groups are also a great place to learn symptom management tips and get resource recommendations on everything from books and exercise programs to tips for easier everyday living.

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Each support group operates a little differently. Some are very focused on sharing, while others primarily offer educational lectures. Many are a mix of both. Certain support groups are for specific audiences, providing space for care partners, for women with PD or for those with young-onset PD. Groups also vary in size. Like choosing the right doctor, it is important to find a support group that is a good fit for your needs.

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While many support groups meet in person, many moved to zoom during COVID-19 lockdowns and liked it so much, they continue with that meeting path. Some support groups  meet virtually over zoom about specific topics, not just geographic areas that some people find interesting. For example, a Care Partners only support group meets the 2nd Tuesday of every month at 7pm and  Living with PD support group meets the 2nd Monday of every month at 7pm on Zoom..

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You can join the Care Partner Virtual Support Group on Zoom at this link:  https://us02web.zoom.us/j/85315876563

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You can join the Living with PD Support Group on Zoom at this link: https://us02web.zoom.us/j/83108988345

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For a listing of Parkinson's support groups in Alabama, click the red box below.

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In addition to support groups, many movement groups have additional support group meetings. To learn more about Movement Groups in Alabama, click the red box below.

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