Parkinson’s Q&A: How do I find information after a new diagnosis?

Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question answered by the Parkinson’s Foundation Helpline on PD Conversations. 

Question: My husband is newly diagnosed with Parkinson’s disease (PD) but didn’t tell me much about his diagnosis. What should I know about Parkinson’s, and what resources could be helpful for us?

It sometimes takes time for people who are newly diagnosed to share much about their diagnosis and symptoms. It is difficult news to hear and difficult to digest. Giving him time to reveal what he wants to at the right time might be helpful. 

We have no way of knowing the rate of progression or symptoms people may develop. For the most part, he may have some movement symptoms like tremor, slowness of movement, and stiffness or rigidity in his muscles in the beginning. This may worsen over time. He may also have some non-movement symptoms like anxiety, low blood pressure, decreased facial expression, or hoarse voice. However, no one can predict if he will develop any of these symptoms as Parkinson’s is different for every person. 

Treatments such as medications and exercise may help manage symptoms, while seeking expert care — through building a care team — improves the quality of life and lowers the risk of complications.

In the meantime, you can educate yourself and share these resources with him when he is ready:

We have a newly diagnosed page to review and encourage you to share it with your husband when you feel he’s ready. Please see our webinar about the newly diagnosed and I suggest you also see our 5 Steps to Living Well article.

We have a booklet on Frequently Asked Questions and Living Your Best Life. Learn more about exercise as a treatment because studies show it can help increase quality of life and possibly slow down progression. It can also lift his mood, so encourage him to exercise!

Please also join us for Meditation Mondays, Wellness Wednesdays, and Fitness Fridays at PD Health @ Home. You can also view the Meditation Mondays, Wellness Wednesdays, and Fitness Fridays archives for more resources. Please call the Parkinson’s Foundation Helpline for answers to your PD questions at 1-800-4PD-INFO (473-4636).

Do you have a question for the PD community? Join the PD Conversation in our discussion groups: Newly Diagnosed, Symptoms, Caregiving, Tips for Daily Living, Young Onset and more.