“You have Parkinson’s” – that is not a one-sided experience!
The job of a care partner can be tough. No matter how much you care for your loved one, no matter how strong your relationship is, there are shifts and changes and role reversals that come with a movement disorder diagnosis that are just downright hard. The person with the diagnosis is obviously directly impacted in so many deep and challenging ways, but care partners, adult children, family, and friends are also impacted, and they need support that is unique to the journey they are on.
Basic education is readily available on the internet, but it often only scratches the surface of what the care partner and adult child really want and need to know. And while some might address the sadness, fear, concern, anxiety, and helplessness that can come with this journey, PMD Alliance is here to also offer hope and connection.
Enter Getting Real!™ Online.
This program was designed specifically for care partners and adult children who want to learn about the disease and topics that are relevant to their specific situations. Getting Real!™ Online is a virtual community that offers education, resources, and connection. The library of educational videos is available for you to watch whenever and as often as you want. The topics are covered by experts in movement disorders and address subjects ranging from symptoms and practical management to coping with stress, all in short, conversational style programming. Getting Real!™ Online will also offer chat groups and discussion groups where you can interact with other care partners and adult children from all over on a variety of topics.
So often as care partners and adult children, you put on a strong front and play cheerleader to your loved one although you are walking this journey, too. Ensuring the person with the diagnosis understands and has education about symptoms, treatment options and lifestyle behaviors that improve quality of life is paramount. However, care partners and adult children need information geared specifically toward them so they can best navigate the road that lies ahead, too. Getting Real!™ Online was made available on April 20th. This program does require registration. Once registered, you will be able to begin accessing the videos. New material will continue to be added. Chat groups, monthly facilitated discussion groups, and topic-specific roundtables will launch in May.
At PMD Alliance, we recognize that a movement disorder diagnosis impacts more than just the person with the disease. We want to support care partners and adult children on their journey as well. It is our hope that this educational platform will help equip you in practical ways that prepare you for the journey ahead and fill you with hope as you connect with others who share in your journey.