I was just diagnosed with Parkinson’s disease. What do I do now?


Community Answers
  • Editorial Team author
    1 year ago

    Receiving the life-altering news of being diagnosed with Parkinson’s disease can be devastating and overwhelming. Denial, anger, and depression are some of the common stages one goes through after being diagnosed. Working through these stages will be challenging, but one thing to keep in mind is that you are not alone! Many have found comfort in seeking out support groups, whether in person or online, or seeking outside professional help. In addition to seeking support, learning more about PD and treatment options, and assembling a healthcare team are great ways to take charge of your health.

  • Kirk Hall
    1 year ago

    There is no denying that being diagnosed with PD is a life-changing event. No matter what your age is, the vision you had for your future will be changed. Take time to ‘process’ the diagnosis and how you feel about it. Share those feelings with someone you trust who cares about you. You do not have to take this journey alone! When you are ready, the best way to avoid having fear or anxiety ‘own’ you is to make a decision to be proactive. Here are recommendations based on the experience of ‘veterans’:

    1. The most important thing to do is to choose a doctor that has appropriate experience, training, and education for your condition. The best choice is a movement disorder neurologist (MDN). You may like the idea of continuing with your current doctor (family doctor or primary care physician) because you already have a relationship with them. It is true that you will have to build a relationship with a new doctor, but it is the right thing to do! You may meet other patients who recommend a neurologist they work with. Understand that there are many types of neurologists including general practice and many specialties (pediatric, vascular, pain management and more). Not all neurologists have movement disorder expertise that will enable them to recognize the subtle symptoms of PD and recommend appropriate medications and/or therapies. To do a search for a movement disorder neurologist in your area, visit https://www.partnersinparkinsons.org/find-movement-disorder-specialist?cid=aff_00032. If there are no movement disorder neurologists within reasonable driving distance you have a couple options. Contact a few MDNs outside your area and ask them whether they work with patients in remote areas using telemedicine. This will enable you to work with them long distance using the phone and computer. They may ask if you can travel to their facility once a year (for example). Or you could pursue the option of establishing a ‘team’ relationship with a local neurologist.
    2. The best way for you to attempt to minimize your symptoms and slow progression is exercise. If you are able, try to include aerobic, strength and stretching exercises. Talk to your doctor about what type and how much exercise is right for you. Even if all you can do safely is get out of your chair and move around your house that will help you stay positively engaged and fight off the apathy that some of us experience.
    3. Take ownership of your situation by learning about PD and how you can live well with it. This will enable you and your care partner to take an active role in the management of your condition, including providing information about your symptoms, any changes you have experienced, things that concern you, medications you are taking, other conditions you may have and more. If you have concerns, ask questions! If your doctor consistently does not take the time to answer your questions, find a new one! Your obligation is to yourself and your family!
    4. Locate and join a PD support group. ‘Test drive’ one or two, if necessary, to find one that is comfortable for you and your caregiver. Attend multiple times to get a better feel for it and start to develop relationships and friendships. This is a great place to get information that will help you, share information that will help others, and discover the positive impact a sense of community’ with your PD brothers and sisters can have. These groups can be a great source of support for caregivers as well as patients!
    5. Stay engaged! The steps above will get you moving in a positive direction. It is OK to have a bad day here and there, but own it and don’t let it turn into a bad week. You do not have to go through this alone!
    6. There is a need for newly diagnosed patient participation in clinical research! To learn more visit https://foxtrialfinder.michaeljfox.org/register/* and complete the profile. Join the fight! Make a difference!
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