Living with Parkinson’s can present a range of complicated emotions. It’s normal to experience anger, sadness, and fear — fear for the loss of “normalcy” in life, fear of how Parkinson’s disease will alter your relationships, and fear of what’s to come.

In most cases, people with Parkinson’s know very little about the disease until they receive a diagnosis. The first step in demystifying fears around Parkinson’s is to arm yourself with information and address the most common anxieties surrounding your diagnosis.

Here are the top 5 PD “Scaries” you or a loved one may experience and actionable steps for managing these fears.

1. Future Unknowns

It’s normal to experience anxieties about what’s to come. You may wonder:

“How quickly will my Parkinson’s progress?”

“What symptoms will I experience? How severe will they be?”

“Will I be able to be present for big life moments, like weddings, the birth of a child or grandchild, or graduation ceremonies?”

“What will my life look like in three, five, ten years?”

Every person’s journey with Parkinson’s is unique. While it may not be possible to predict the future, there are steps you can take to help maximize your quality of life.

These include:

• Eating a healthy diet full of fruits, vegetables, and protein and avoiding inflammatory foods and beverages.
• Incorporating a regular exercise program, like yoga, hiking, or tai chi.
• Keeping a strong social network and meeting up with loved ones regularly.
• Advocating for yourself with your healthcare team and staying current on treatments and research.

Rather than getting caught up in hypotheticals, try focusing on what you can control to positively impact your environment NOW.

2. Engaging with an Attorney

Living with Parkinson’s may fast-track administrative tasks that can feel overwhelming and “adult.” One of these is meeting with an attorney to develop a will.

The thought of creating a will is scary to many. For some, it brings the reality of mortality to the forefront, which can be uncomfortable.

While addressing legal matters might seem scary, it’s also empowering!

Writing a will is not a sign of surrendering to Parkinson’s. It’s a smart and effective way of organizing your assets and affairs to ease the burden on your family as much as possible.

Remember that Parkinson’s disease will progress regardless of whether you have a will in place. Developing a will and/or trust is a thoughtful way to define how to allocate your possessions and finances. This minimizes confusion and conflict while bringing peace of mind to both you and your loved ones.

3. Telling Friends & Family

Sharing your diagnosis with loved ones can be a difficult and emotional experience. You may worry how someone will react, whether they’ll treat you differently, or how to explain your needs.

How and when you decide to tell family and friends is entirely up to you. Keep in mind that maintaining an open line of communication is the most effective way to minimize confusion and get the emotional and physical support that you need.

See our guide for how to share your diagnosis in a loving way. If it’s still overwhelming, consider joining a support group where you can bounce ideas off others and gain clarity on what has worked for other people living with Parkinson’s.

4. Financial Insecurity

The financial burden of Parkinson’s can be significant, especially as symptoms progress and medical care, treatment, and possibly assistance with daily tasks become more necessary.

People living with PD may also need to reduce their work hours or retire earlier than planned, which can lead to worries about long-term financial security.

Start by speaking with a financial planner who understands the complexities of managing chronic health conditions. A professional can help you budget for future medical costs, explore disability benefits, and advise on how to maximize your retirement savings.

Additionally, make sure you review your insurance policies, including long-term care insurance, if applicable. Taking a proactive approach to your financial health can reduce stress and prepare you for potential expenses.

5. Moving to Assisted Living

The thought of losing independence and adapting to a new environment can be unsettling, particularly for those who have been self-sufficient for most of their lives.

It’s important to remember that assisted living does not mean a loss of independence but rather a shift in how support is provided. Consider exploring assisted living options early, especially those that are more familiar with the needs of people living with Parkinson’s — visit communities, talk to staff, and learn about their services.

Having a clear understanding of what to expect can make the transition smoother if or when the time comes.

Be Prepared & Seek Support

Facing the PD “Scaries” is a normal part of living with Parkinson’s disease. It’s crucial to validate these fears and acknowledge that they stem from real, understandable concerns about the future.

However, by taking proactive steps, you can significantly reduce the anxiety associated with these fears.

Remember, you don’t have to face these challenges alone. Surrounding yourself with supportive healthcare professionals, financial advisors, friends, family, and community resources will make the journey less overwhelming and more manageable.

Check out PCLA’s full calendar of events for our virtual and in-person support groups. We’re here to provide quality resources so you can live your absolute best life.