I Got Diagnosed with Parkinson’s — Now What Do I Do?

Oct 26, 2022

First things first: take a deep breath. Understandably, it can be a lot to take in. But know these three things:

  1. You’re not alone.
  2. You have many support options.
  3. You can live a great life!

Nonetheless, knowing what to do next or where to turn for help can be tough. Many resources are available to help you live your best life with Parkinson’s.

Here are some things to keep in mind as you begin this journey.

Did I Get Misdiagnosed?

Female psychologist listening to young lady talk about her Parkinson's disease

Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year. So how can you know if you’ve been correctly diagnosed with Parkinson’s?

This question often comes up, but accepting your diagnosis is the best path forward.

There is no single test that shows you have Parkinson’s. Your symptoms and reactions to medication are recorded and measured over time to help make the determination. However, once your physicians have performed various tests and found them conclusive, your diagnosis is generally reliable.

Of course, only a qualified medical professional can give you a definitive answer, but if you have any concerns about your diagnosis, it’s always best to speak to your doctor. Once you’ve been diagnosed, learn how to live your life fully with the condition.

See a PD Specialist

Neurologist showing brain scan to a man living with Parkinson's disease

After receiving a Parkinson’s diagnosis, consult with a movement disorders specialist. A movement disorders specialist is a neurologist specializing in diagnosing and treating neurological conditions that affect movement, such as Parkinson’s.

While your regular doctor can provide initial care and medication, a movement disorders specialist can offer more specialized care and services. For example, a specialist can help you create an individualized treatment plan that may include medications, physical therapy, and lifestyle changes.

They can also help you manage your symptoms and side effects and provide support and resources for you and your family. In addition, seeing a movement disorders specialist can help ensure you receive the best possible care and treatment for Parkinson’s.

Share Your Diagnosis (As You See Fit)

How and when you share that you’ve been diagnosed is up to you. Nonetheless, here are the two major groups of people you will likely need to consider as you navigate your PD journey: family & friends and work.

Sharing with Family & Friends

Father and son holding hand while discussing Parkinson's disease

Knowing how to break the news to your family and friends can be difficult. You may feel scared, alone, or confused about the future and how they will react.

Also, take your time and only share when you’re ready. You have a right to privacy when it comes to your health.

Once you feel comfortable sharing your diagnosis with loved ones, you must be honest about your feelings and what you are struggling with. Many people find it helpful to write what they want to say beforehand. This can help you to stay on track and focus on developing solutions.

It is also important to have any questions or concerns about your loved ones’ reactions. Remember that everyone will process the news in their own way, so try to be patient and understanding.

Ultimately, sharing your diagnosis is a brave and courageous act that will help to garner trust, support, and love from your family and friends.

Sharing with People at Work

Man looking hopeful during his facetime chat about Parkinson's disease

Many people, especially those with young-onset Parkinson’s disease, continue to work after being diagnosed. However, if your symptoms are significant and your job is physically demanding, start a backup plan. Examples of preparing include:

  • Changing careers
  • Shifting schedules
  • Financial planning for retirement
  • Moving closer to care partners

Remember that you have a right to disclose your diagnosis and that doing so can help you get the support and understanding you need. Check out these tips for sharing your Parkinson’s diagnosis with co-workers:

1. Choose the right time and place.

Tell your co-workers in person or over Zoom rather than through a phone call or email. This will allow them to see your facial expressions and body language and to ask any questions they may have. Choose a quiet moment when you won’t be interrupted, such as during a scheduled meeting, break, or after work hours.

2. Keep it simple.

You don’t need to go into detail about your symptoms or prognosis. State the facts about Parkinson’s and that you may need some accommodation or understanding as you manage your condition.

3. Reassure them that you’re still the same person.

It’s natural for your co-workers to feel uneasy when they hear about your diagnosis. Let them know that you’re still the same person they’ve always known and that you’re committed to continuing to work diligently despite your condition.

4. Be prepared for questions.

Your co-workers may have many questions about Parkinson’s, so it’s helpful to be prepared with some answers. You can find helpful information on the PCLA website or online research resources.

5. Offer to keep them updated.

Tell your co-workers that you’re happy to keep them updated on how you’re doing, but respect their boundaries if they prefer not to know too much detail. You can also let them know they can contact you anytime if they have any questions or concerns.

Plan Your Finances

Three people sitting with one another while going over information about Parkinson's disease

A Parkinson’s diagnosis can be a shock to your finances as well as your health. The good news is that with a little planning, you can take control of your finances and make sure you have the resources you need to manage your disease. Here are a few tips to get started:

1. Create a Budget (and Stick to It)

Take a close look at your budget and prepare for the added costs of Parkinson’s treatment. You may need to make some adjustments, such as cutting back on travel or dining out, to free up money for medical expenses.

2. Know Your Insurance Coverage

Call your insurance provider to know exactly what is covered and what is not so you can plan accordingly. If you have any gaps in coverage, consider purchasing supplemental insurance.

3. Start Saving

Start saving now for future costs. Parkinson’s is a progressive disease, so costs will likely increase over time as you manage arising symptoms. Having a financial cushion will give you peace of mind and help ensure you can afford the care you need.

Choose Your Care Partners

Happy couple living with parkinson's disease while cooking dinner

Care partners are the people who will help manage your day-to-day life with Parkinson’s. Your care partners are often family members like your spouse or children. However, you can choose who you feel most comfortable with from compatibility and a financial perspective.

Here are some things to consider when making this important decision.

1. Trust

This person could be a family member, friend, or professional caregiver. Whoever you choose, you must trust them implicitly. They will be helping you with some of the most personal aspects of your life, so it’s essential that you feel comfortable with them.

2. Communication

Effective communication is essential for all relationships, but it’s especially important in a caregiving relationship. There will be times when difficult conversations need to be had, and everyone involved must be able to communicate their thoughts and feelings openly. If there are concerns about communication ability, have a candid conversation before making a decision.

3. Availability

Can they commit to being available when you need them? Do they live close by? Can they take time off from work or other commitments if necessary? Answering these questions will help you narrow down your choices.

4. Skillset

What skills does the person have that would be helpful in caring for someone with Parkinson’s? Do they have medical training? Are they good at keeping organized? Can they cook healthy meals? Consider both the practical skillset required and any special talents that could make the caregiving experience more enjoyable for both you and your partner.

Care for Yourself

Woman doing yoga to cope with her Parkinson's disease

Living with Parkinson’s can be challenging, but a healthy lifestyle fully sets the table for living. Here are a few general tips:

1. Regular Doctor Visits

It is important to see your doctor regularly, even if you are feeling well. Your doctor can monitor your symptoms and adjust your medication as needed.

2. Exercise Regularly

Exercise is important for everyone, but it is especially important for people with Parkinson’s. Exercise can help improve your balance, flexibility, and coordination.

It can also help relieve stress and improve your overall mood.

Try to exercise for at least 30 minutes a day, five days a week. If you can only do that a little at once, break it up into smaller chunks of time throughout the day. Just make sure to get moving!

3. Eat a Healthy Diet

A healthy diet can help you maintain a healthy weight, have more energy, and manage your symptoms better. Eat fruits, vegetables, whole grains, lean proteins, and healthy fats. Limit processed foods, sugary drinks, and red meat. Stay hydrated by drinking lots of water throughout the day.

4. Get Good Sleep

Stick to a regular sleep schedule as much as possible, create a relaxing bedtime routine, and limit screen time before bed.

5. Connect with People

As a newly diagnosed person with PD, isolating can harm your mental health, leading to anxiety and depression. To counter this, find support groups, in-person sessions, and events to stay connected with people in the PD community.

Next Steps

In addition to the various tips above, we recommend you write a daily journal. Record your symptoms diligently so that you can compare them against previous symptoms.

If you have any questions about PD, please get in touch with our PCLA team — we’d be happy to help you navigate your options and connect you with our year-round support groups and events.

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