What’s Next After a Parkinson’s Diagnosis?
By: Camila Cal, SeniorLivingGuide.com
Parkinson’s disease is one of the most prominent diseases associated with aging. In fact, approximately one million people in the U.S. are living with Parkinson’s. And even though the disease is common, many seniors experience difficulties knowing exactly what to do after a diagnosis. Luckily, Naomi McLeod, Program Director for the Virginia chapter of the American Parkinson’s Disease Association (APDA) joined SeniorLivingGuide.com Podcast to guide seniors on how to navigate life post-diagnosis.
First, Naomi provided the basic, essential information about Parkinson’s: It is a progressive, neurological disease due to a lack of dopamine. The disease is so complex because it affects different motor symptoms and causes tremors, abnormalities in gait, weak balance, slowness, and more. Additionally, there are non-motor symptoms such as depression, fatigue, constipation, etc. Naomi highlighted how common the diagnosis is, too. According to research, every six minutes someone is diagnosed with Parkinson’s leading to 90,000 new diagnoses every year. The goal, she said, is to find out why people are getting Parkinson’s and to find a cure.
Another complicated aspect of Parkinson’s is that receiving a diagnosis can be difficult. Naomi explained that getting to the point of diagnosis takes time and can be frustrating to patient and their care partner. Once you have been diagnosed, there can be an overwhelming number of feelings involved, including shock, denial, anger, sadness, and even relief at finally having a name for your symptoms.
So, what’s next?
Naomi emphasized that you are still able to live life with Parkinson’s. Part of APDA’s mission is to provide resources so that people with a diagnosis find the right path. The reality is that every person with Parkinson’s will likely have a different experience. The key is to have a strong healthcare team that you know you can turn to if you have questions. Don’t be afraid to advocate for yourself and your needs. And try to remain open minded and honest about your symptoms as they arise.
Additionally, Naomi explained that it can be easy to fall into a rabbit hole of Googling information. And while it’s important to stay engaged and knowledgeable about your disease, remember to only look at credible sources. And when in doubt, visit a doctor or bring up your concerns with support groups.
Focus creating healthy habits. Because everyone is different, –some seniors may be working, some may be retired, some may have had an active lifestyle, some may not– be patient with yourself. The key is to make adjustments. For example, exercise can slow progression of Parkinson’s. Start small: do something you enjoy, and incorporate endurance, strength, stretching, and balance. There are so many free resources like YouTube, going for a walk with grandkids, etc.
Adding physical, occupational, and speech therapy into your treatment plan may be encouraged as well. Physical therapy targets improving balance, strength, and gait. Occupational therapy focuses on daily living tasks such as showering, cooking, learning how to modify the home for your lifestyle. Speech therapy improves swallowing challenges or other vocal changes. Some neurologists recommend engaging in these therapies before symptoms worsen. Therapies give people control and flexibility back.
Staying active and engaged is also important. Having Parkinson’s can be very isolating, especially when experiencing symptoms of depression and anxiety. Try to maintain as much socialization and connection as possible. Making these connections and interacting with friends, family, and others that have been diagnosed with Parkinson’s is vital to shifting your mindset and continuing to create those healthy habits that will create a better quality of life. Use APDA and similar organizations as a resource – they offer activities that help encourage socialization, like support groups or art programs.
APDA’s mission has four pillars: support, research, education, and programs. Their goal is to help Parkinson’s patients live with the disease and to be a resource for the community. Whether you want more information about Parkinson’s or where to find activities, programs, or virtual groups, they will guide you in the right direction. If you’re not a patient but still want to get involved with APDA, they accept volunteers! McLeod said they encourage anyone in the community to attend their events and learn about Parkinson’s.
Naomi and APDA believe that there is strength in optimism, hope, and progress. And along with staying engaged and educated, what’s next for Parkinson’s patients is a life full of support, community, and connection.
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