Parkinson’s Diagnosis: 5 Essential Steps for Education, Support, and Planning
- Rebecca Kruise
- Apr 1, 2024
- 3 min read
Facing a Parkinson's disease diagnosis can be a daunting experience, both for the individual receiving the diagnosis and their loved ones. Parkinson’s is the second most common brain disorder that affects millions of people around the world. However, amidst its challenges, there is hope, resilience, and a wealth of resources to help navigate this path.
After a diagnosis, it can be difficult to know where to turn. I have compiled 5 steps to help you navigate the complexities of the diagnosis and what needs to be prioritized.
Step 1: Educate yourself on Parkinson’s.
Educating yourself on Parkinson’s can help you feel more confident about navigating the disease's progression. Parkinson’s is a progressive neurological disorder (meaning it will get worse) that primarily affects body movement. Nerve cells in the brain produce dopamine, a neurotransmitter needed for coordinated muscle movement. When these cells are damaged or die, dopamine is not produced, leading to muscle changes, including tremors, stiffness, and impaired balance. This can affect all parts of the body.
Step 2: Seek expert medical advice.
Find a healthcare team that will help you navigate the progression of the disease. This team can include:
Neurologists, specifically one specializing in movement disorders, if possible, to provide expertise in diagnosing and managing the disease and prescribing appropriate medications.
Physical therapists design exercise programs to maintain mobility, balance, and physical function.
Occupational therapists assist in addressing challenges relating to daily living activities and provide adaptive tools and modifications to the home as needed.
Speech therapists maintain communication skills and swallowing difficulties that can arise as the disease advances.
Social workers help navigate the various challenges related to providing community resources, aiding with coordinating care, and helping advocate for the individual to receive the appropriate services, accommodations, and support.
Dietitians offer guidance on maintaining a healthy diet to support the overall well-being of individuals with Parkinson’s and can address nutritional challenges as they arise.
Many others may be a part of this team as well. The important thing is finding team members who will listen to you and address your concerns.
Step 3: Build a support system.
Your support system should include individuals who can walk alongside you on this journey. Friends and family members who can help you to appointments, make your meals, and celebrate with you in the victories. Finding a support group in person or virtually is another excellent way to help an individual through the various challenges of Parkinsons. Individuals in the support group share similar experiences, resources, education, and strategies to assist in navigating the disease.
Step 4: Prioritize physical and mental well-being
Regular exercise is crucial for maintaining skills and managing symptoms. Physical activity promotes flexibility, strength, and balance. Activities that stimulate the mind can help maintain the brain skills needed for everyday activities and engagement. Participating as much as possible with family and friends also helps maintain an individual's mood and mental health throughout the disease.
Step 5: Plan for the future.
Because Parkinson’s is a progressive disease, it is vital to have various plans in place. This can and should include:
Having a plan for more advanced care
Having a POA in place
Consider financial arrangements
Complete a living will
Following a diagnosis, connect with a lawyer to help establish these documents while the individual is well enough to sign the necessary documents.
I have created a complete system to help collect and obtain the most important documents and information. You can grab your copy here.
The journey with Parkinson’s may be challenging and scary to navigate. Still, with education, support of a medical team and friends/family, and proactive planning, individuals and their loved ones can navigate this path feeling empowered.
It can feel life-stopping to hear a Parkinson’s diagnosis, but it doesn’t have to be. By educating yourself and establishing a solid medical team and support system, you can continue to participate in what you enjoy most.
Now you know what you should do if the diagnosis is Parkinson’s, but if you want to learn more about what it is – I’ve got you covered.
I love to share resources to help you navigate all of life’s unexpected. Here are some Parkinson’s resources that may be helpful:
