Getting Real with Care Partners - PMD Alliance

As a care partner or adult child of someone with Parkinson disease, questions like these might keep you up at night: 

“How do I learn what the doctor means when he uses those terms about my loved one?”  

“I feel like I am getting lost in being a care giver.”  

“What can I expect in the future?”  

“Is what my loved one is experiencing normal?”  

How will I know whether I should consider a care facility?” 

“Where can I find tips on how to make daily life more manageable?”  

I’m so glad you asked! Since our inception, PMD Alliance has had care partners as a cornerstone of our service model. We have made a promise in line with our value of transparency to not withhold any information from you that would help you navigate Parkinson’s, and to listen, learn and take one step at a time together with you. 

One of the many things PMD Alliance has done toward that end is develop an online community, Getting Real Online™, otherwise known as GRO, that launched in March, 2021. This program is the next iteration of our in-depth, in-person program Getting Real! that launched August 2019, allowing care partners to join from anywhere, anytime.

As a care partner or adult child your responsibilities start out rather insignificant, but as you continue the journey with your loved one there comes a time when you suddenly realize you may not be equipped for some of the things you face. Getting Real Online™ is designed exclusively for the Care Partner and the Adult Child and provides a variety of resources to assist you with that very challenge.  

It includes a glossary of terms that is helpful when terminology is new to you. You aren’t the expert – yet. It has links back to pages on our website that help you find upcoming online programs to join and support groups in your area or online. Part of the GRO Community includes a Tuesday online discussion, facilitated by a social worker, “Real Talk: Care Partner Discussion Group.” This group is dedicated to those discussions of difficult topics while making connections with those who face similar situations and challenges. It is an opportunity to share frustrations and tips in real time. Click here to learn more and join.

There is a large collection of videos hosted by our VP of Programs and Director of Education interviewing several of our movement disorder specialists on a wide variety of topics from the basics to more complex symptoms that a person with Parkinson’s often face. We know your time is precious and so following the goals of “Getting Real” the videos are short and to the point for you to view at your convenience, as you have opportunity. You can go back and watch them as many times as you want and in any order. As new topics are identified, more videos will be added to this collection. 

In the last two months we have added a Getting Real! Chat component – as with all online chats, it takes a while to ramp up engagement – being first is vulnerable and can be a little scary. But know that it is a safe space where you can connect with other care partners and adult children who are facing some of the same challenges that you are and may benefit from a tip you have learned or have a tip to share with you in your time of frustration. You can learn from each other and be encouraged, knowing others feel the same things you do and can cheer you on. 

Since our March 2021 launch, there are other resources that have emerged for care partners and adult children, so clearly our assessment of need was accurate and timely. True to our mission, PMD Alliance takes a personalized approach to addressing support and educational needs and we will always focus on content and getting to the heart of the issue.  One of our care partner ambassadors expressed, “I LOVE what you have here!”

The Getting Real Online™ Community is just waiting for you to join in. The first course of action STARTS TODAY. Click here to get started. Share your thoughts – we treasure your honest communication with us enabling us to assess needs accurately and timely.  

“The concept and implementation of GRO is one that can help change not only the lives of those with Parkinson’s care partners, caregivers, and essential caregivers, it will also impact the health of those with Parkinson’s. The better informed the care is the better care they will be able to implement and this fact will reduce many levels of stress in homes and lives where Parkinson’s invades. I am thankful Parkinson and Movement Disorder Alliance has championed the support of the carers to this level.” – Kelley Roberson, Watauga, TX 

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