Aware in Care Ambassadors played a key role in helping the Parkinson’s Foundation distribute 100,000 Aware in Care kits. We recently interviewed Ambassadors Patsy and David Dalton from Columbia, MO, how they help us spread awareness and advocate for people with Parkinson’s disease (PD) when hospitalized using the free Aware in Care kit. Together, they educate support groups, health professionals, Centers of Excellence, care partners and people with Parkinson’s.
Q. How do you help people with Parkinson’s prepare for the possibility of hospitalization?
A. Twenty-six years ago, David was diagnosed with Parkinson’s and we decided to start a support group. Now we facilitate two groups that meet monthly, one with nearly 100 members. We have learned that we all need each other's support. Preparing for the scary prospect of a hospitalization was greatly assisted nine years ago when the Aware in Care kit was first introduced. Now, as Ambassadors, we always re-introduce the kit to support group members to prepare them how to talk to hospital staff about their vital need to have their PD medications on time, every time.
Q. What are “Aware in Care Moments?”
A. Since we believe that repetition is key to bringing home the Aware in Care message, we share an "Aware in Care Moment" at each monthly meeting, which addresses key points. Our Aware in Care expert educators address different topics each month in our support group. We want to make our meetings entertaining, while still educational!
Q. What advice would you give someone who is hesitant to share the kit with hospital staff?
A. It's a good idea to broach any topic with a smile and an air of cooperation. Then just tell it like it is: "This hospital stay's success is going to depend on me getting my Parkinson's meds on time, every time. Research shows that things can go wrong if I don't get my medication on my prescribed schedule. We all know that Parkinson's is a different disease for every person, and so is our medical treatment." Just keep thinking to yourself, "This is my life at stake, this staff is here to ensure my well-being and I'm going to educate them on my care and the care of their future patients living with Parkinson’s!" Be strong, be bold and speak up.
Q. We know that you use the “Health” app in your phone to complement the information provided by your kit. Can you tell us how?
A. Since we never know when an emergency can strike, it's a huge help to have Aware in Care information on your phone. It's a great backup plan is you are headed to the hospital without your kit. If you're unconscious when emergency responders are on site, they're trained to check your smart phone to find this information. It's kind of like having a medical alert bracelet, except it's on your phone. A quick tip: When you have a medication change, be sure to update your medication form AND the meds section of your smart phone health app!
Q. What component of the Aware in Care kit do you find most helpful?
A. We love the Hospital Action Plan because it completely explains the Aware in Care program and the kit. It explains the six steps to optimum care, a checklist for a planned hospital stay and for an emergency situation. Special considerations are also included in the plan, along with tips on how we can make hospitals safer for people with PD. The back cover also has a great summary of medications that may be contraindicated in PD.