As the Parkinson’s Foundation celebrates the distribution of our 100,000th Aware in Care kit, we check in with our Aware in Care Ambassador, Myra Hirschhorn, to learn about her work educating health professionals and people with Parkinson’s about the Aware in Care kit and the importance of advocating for oneself through education in order to achieve safety across hospital care.
1. Why did you become an Aware in Care Ambassador?
The Aware in Care kit is such a great solution to what has been a tremendous concern to folks living with Parkinson’s disease (PD). I am pleased to be a part of bringing this excellent resource to folks who can benefit from having the kit ready and available to them, should it be needed for a planned or emergency hospital visit. Hats off to the Edmond J Safra Philanthropic Foundation and the Parkinson’s Foundation for developing this!
2. How has your role as an Aware in Care Ambassador helped you connect with larger organizations to educate the community about the hospitalization kit?
The Lee Silverman Voice Therapy Global (LSVT Global) holds a two-day program for the purpose of educating physical therapists, occupational therapists and speech-language pathologists on valuable information and techniques to assist folks with Parkinson’s. On the second day, folks with PD attend to learn about the program. Several years ago, I began sharing Parkinson’s information at these programs held near my home in South Jersey and included details on the Aware in Care kit as a way to engage with both health professionals and people with PD while educating them on this incredible resource.
Recently, representatives of both the Aware in Care program and LSVT directors agreed to have Aware in Care Ambassadors attend the LSVT Global Seminars throughout the country to share the information in a similar manner. In addition, the kit information cards will be added to the welcome bags given to therapists and people with Parkinson’s. With participating health professionals better informed about the Aware in Care campaign, our hope is that they will return to their clinics better equipped to provide safer hospital care!
3. Can you explain the doctor letters you use as Ambassadors and how they can be used by others with PD?
The new doctor’s letter shares important information about PD to further inform the medical staff during a planned hospitalization. I hope to share this with movement disorder specialists in my area as they may want to provide them to their patients to distribute. I will also share the letter with those in my support group and my email distribution list. I will encourage patients to have it signed by their movement disorder specialist and place it in their Aware in Care kits to be used if/when they are hospitalized. Our goal is for the letter to complement the Aware in Care kit to facilitate safe visits to the hospital.
4. What advice would you give someone who is hesitant to share the kit with hospital staff?
Understandably, you may feel uncomfortable with the need to inform the nurses and staff members about Parkinson’s, but it is important to remember that by doing so, you are making the best situation possible for yourself or for your loved one. Certainly, we want you or your loved one to improve rather than have a setback due to a lack of knowledge on the part of the hospital staff.
My advice is to review the information in the Aware in Care kit with a particular emphasis on the nurse fact sheet, the medications with the dosing times and the special considerations. Be open to any questions from the staff member.
5. What is your favorite component of the kit?
Each part really is so helpful and all materials together provide the pertinent information that is needed. If I had to choose, I feel that the Nurse Fact Sheet pad because it provides valuable points to be aware of in addition to the vital information regarding medications. There are plenty of copies to share with all the medical staff assisting the person with Parkinson’s so that each person can have an individual copy, which is key!
Unfortunately, I have heard too many issues that have come up with folks being provided drugs like Haldol and the horrible reaction that follows it. I hope those days will be behind us now as we take the step to advocate for ourselves and educate those who are caring for us!