Parkinson’s Aware In Care Kit

Aware In Care Kits Reach 100000 In Distribution

As the Parkinsons 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 Parkinsons about the Aware in Care kit and the importance of advocating for oneself through education in order to achieve safety across hospital care.

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 Parkinsons disease . 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 Parkinsons Foundation for developing this!

How has your role as an Aware in Care Ambassador helped you connect with larger organizations to educate the community about the hospitalization kit?

Can you explain the doctor letters you use as Ambassadors and how they can be used by others with PD?

What advice would you give someone who is hesitant to share the kit with 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.

What is your favorite component of the kit?

Fall 2022 Moving Day At Home Program

Join community members from across the country for this virtual experience that allows you to move for Parkinsons from wherever you are! This program will help you get motivated and kick off your 60 minute walk. Remember, you can walk, run, hike your favorite route, or simply just listen to the Moving Day at Home program! We encourage everyone to share photos of their experience by posting to your social media page with the hashtag #MovingDayatHome.

Why Should People With Parkinsons Get This Kit

Everyone with Parkinsons should get a kit because it will help them understand the risks associated with hospital stays. The kit, which can be obtained for free, provides tools that play an active role in their own care. They will be well prepared for a hospital visit and will be able to develop their own strategies with their care partner to get the best possible care.

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Im Not Familiar With That Program What Is An Aware In Care Kit

The Aware in Care kit is a tool used by people with Parkinsons in the hospital, whether it is a planned or unplanned visit. The contents of this kit helps educate the patient how to advocate for the best care possible while also educating hospital staff on the importance of timely medication for everyone with Parkinsons.

Aware In Care: Parkinsons Foundation Recruiting Volunteers To Educate Hospital Staff

By June 22, 2022

Registered nurse Sandra Younan adjusts her N95 face mask as she checks her patients records at the emergency room of Providence Cedars-Sinai Tarzana Medical Center in the Tarzana neighborhood of Los Angeles on Thursday, May 11, 2021.

Nearly 1 million people in the U.S. are living with Parkinsons disease, and an estimated 35,000 live in Pennsylvania. Despite the staggering numbers, 75% of Parkinsons patients dont receive their medications while in the hospital, and the majority subsequently suffer from avoidable complications, according to the Parkinsons Foundation.

To fill this awareness gap, the foundation has launched a program called Aware in Care, which aims to raise awareness about Parkinsons disease for health care professionals.

Now, the Parkinsons Foundation is looking for program ambassadors, who will engage their local communities and hospitals with education about Parkinsons disease and distribute Aware in Care kits. The kits include information for medical professionals about Parkinsons disease, like a medication schedule, and an ID bracelet for patients.

Applications to become an ambassador are open until Friday, June 24. Around 30 volunteers from around the country will be selected. They will be coached to create their own unique goals based on their interests, experiences, and any health/caregiving/professional time constraints, according to the foundation.

5 months ago

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Parkinsons Aware In Care Kit

by admin | Jul 29, 2020 | CoronaVirus

Going to the hospital is almost always a trying experience, but especially during this pandemic. Preparing for that possibility can help it to go more smoothly, especially if you may not have access to your care partners due to visitation restrictions. The Parkinsons Aware in Care Kit is a helpful resource for those with PD as they plan ahead for possible hospitalizations:

Parkinsons Foundation launched the Aware in Care campaign in 2011 to help people with Parkinsons disease get the best care possible during a hospital stay. Research has found that three out of four people with Parkinsons do not receive medications on time when staying in the hospital, and that when this occurs two out of three will experience unnecessary complications. With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinsons face great risks in the hospital.

For more information on the Parkinsons Foundation Aware in Care Kit www.parkinson.org/AwareInCare

Preparing Aware In Care Kit

Kit Contents

Medication Form: List all your prescriptions and over-the counter medications for PD as well as any other medical conditions. Make five copies of the medication form and place the original and copies in the kit. Update the form whenever medication changes.

Medical Alert Card: Fill in the back of the card and place in wallet. This card includes important information for healthcare professionals including a list of medications that are not safe for PD patients.

Fact Sheet for Nurses: Place the fact sheet tablet in kit.

Precautions for Duopa or Deep Brain Stimulation: If you have a DBS device or use Duopa therapy, place the information card in kit.

Emergency Contacts: Make a list of names, phone numbers, emails and addresses of your neurologist, movement disorder specialist, primary care physician, care partner and close family members. Place a copy in kit. Update as changes occur.

Health Care Proxy: Work with an attorney to create a Health Care Proxy that complies with your state guidelines. This document identifies who is authorized to make medical decisions for you if you become incapacitated and unable to express yourself. Place a copy in kit.

Parkinsons ID Bracelet: A stainless steel, hypoallergenic and waterproof bracelet is in kit for you to wear. It alerts medical professionals that you have PD and includes a Parkinsons Foundation Helpline number.

After your kit is assembled, show the contents to your care partner as well as where kit is stored.

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Traveling With Parkinsons Disease

Parkinsons disease can be an impediment to certain activities, but with proper planning, people can still pursue many of the things they have always enjoyed. One of those things is travel to see family, visit friends, or explore new sights and cultures. One key to enjoying travel is planning. Pay special attention to issues that are known to affect how you feel and function. Packing extra medications when traveling has always been a good idea, but with todays unpredictability of flight schedule changes and cancellations, as well as the possibility of contracting COVID, it makes sense to carry even more than a few days supply of extra medication. Anticipate managing any shifts in medication timing if you are visiting a different time zone, interruptions to your exercise and sleep routines, in addition to unforeseeable events and changes. In this episode, we hear from two people with valuable advice and tips for traveling with PD. Rebecca Miller, PhD is a clinical psychologist and Associate Professor of Psychiatry at Yale University School of Medicine and is a person living with PD. Occupational Therapist Julia Wood, MOT, OTR/L is Director of Professional and Community Education at the Lewy Body Dementia Association. An overriding message from both of them is planning for the unpredictability of today’s world.

This Parkinsons Patient Kit Can Make Your Hospital Stay Safer

I had surgery a month ago. While it was a minor, 15-minute procedure, I was more anxious about it than I was before a previous seven-hour deep brain stimulation surgery. Whether its 15 minutes or seven hours, any surgery or medical procedure can cause worry, fear, and anxiety.

Many things can contribute to a good hospital experience as well as a bad one. The Parkinsons Foundation notes that, Additional challenges for people with PD in the hospital arise due to a lack of understanding about the disease amongst hospital staff.

Additionally, the foundation says, Research shows that when people with PD are admitted to the hospital, they have longer stays and more often need rehabilitation afterwards, compared to people without PD.

Several factors contribute to extended stays and recovery periods, include medication delays, missed doses, or errors.

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Living With Parkinsons: Mind Mood And Motion

Thursday, November 17, 2022

For details and to register to attend this free educational program being offered locally on November 17th in Wenham by the Parkinsons Foundation, . Learn about the impact physical activity can have on the movement symptoms of Parkinsons, as well as mood and thinking changes. Education is a powerful tool to create a quality lifestylewe encourage you to attend as many varied programs as are offered, either in person or online!

Avoiding Mishaps In The Hospital

Hospitals are not exempt from making mistakes while we are in their care. To promote the best care possible as a person with Parkinsons, several years ago the foundation began promoting a campaign called Aware in Care, which includes a free Aware in Care kit for patients.

The kit contains several cards that provide medical staff with information or alerts about important patient details. For example, the deep brain stimulation information card alerts medical staff that the person has a stimulator, while the Duopa information card is for those using a Duopa pump. The medical alert card provides general medical information for doctors and nurses.

Its also a good idea to prepare a hospital action plan for your next visit, whether its planned or an emergency. This plan includes creating an emergency contact list and managing medications, among other actions. You can read more about preparing a hospital action plan here.

The kit also contains a Parkinsons disease ID bracelet in case of an emergency where the patient cant communicate.

While all of these items are important, the medication form is invaluable. Copies of a completed form should be kept in the kit. The form can be and completed on a computer before printing it out. Take the time to update the medication form each time a medication or treatment is changed, added, or discontinued.

Lastly, the kit contains a magnet to display a copy of your medication form with your medication regimen next to your hospital bed.

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Ceo John Lehr Offers Broad Insight Into The Parkinson’s Foundation

Past podcasts have given glimpses into the broad range of programs and initiatives that the Parkinsons Foundation has developed and supports. But to give a better understanding of the Foundations mission, its operation, reach, and funding, we spoke with John Lehr, its president and CEO. He discussed the reasons for the merger of the National Parkinson Foundation and the Parkinsons Disease Foundation to form todays Parkinsons Foundation, what the new organization has accomplished, and its plans for the future.

En Espaol Cambios Cognitivos

Cuando uno piensa en la enfermedad de Parkinson , es fácil asociarla más con los síntomas motores, como la rigidez o el temblor pero también existen síntomas no motores, como los cambios de estado de ánimo, la ansiedad o la depresión. En este episodio, hablamos con la doctora Elsa Baena, neuropsicóloga clínica en el Barrow Neurological Institute, Centro de Excelencia de la Parkinsons Foundation, acerca de estos cambios cognitivos asociados con el Parkinson. La doctora Baena explica la conexión entre el Parkinson y la cognición y cómo pueden prepararse las personas con Parkinson para estos cambios . Asimismo aprenderemos acerca de los miembros del equipo de atención médica que pueden apoyar a una persona con Parkinson y a sus familiares con estos cambios cognitivos.

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A Conversation With Advocate Ann Kopf About The Aware In Care Kit

When a person advocates for themselves, they can achieve great things. I recently had a conversation with an advocate for the Parkinsons Foundation, Ann Kopf. Ann lives in Milwaukee and works with different staff members in the foundation to support others with Parkinsons. I emailed her to learn more about her advocacy efforts.

Excerpts of our conversation follow.

Three Easy Ways To Get These Life

Option 1: Download the free printable resources below.This does not include the kit bag, bracelet or magnet. We recommend that you designate a bag to keep this information along with your medication in its original bottles for use in the hospital

Option 2: Order the free Aware in Care Packet.This includes the Wallet Card, Nurse Fact Sheet Tear Off Pad and Medication Form. It does not include the Hospital Action Plan, kit bag, bracelet, magnet or specialty resources . We recommend that you designate a bag to keep this information along with your medication in its original bottles for use in the hospital.

This includes the full kit , including a zippered pouch used to store all information and your medication in its original bottles for use in the hospital.

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I Need My Parkinsons Medications On Time Every Time

According to the Parkinsons Foundation, people with Parkinsons disease are admitted to the hospital 50% more than their peers. Three out of four hospital patients with PD do not receive their medication on time. Therefore, they have a one in four chance of complications because of medication errors. The Parkinsons Foundation launched the Aware in Care campaign in 2011 to help people with PD get the best care possible during a hospital stay.

I attended a Parkinsons Foundation educational event in May and saw the Aware in Care Kit. One kit per PD patient is complimentary. My kit arrived recently. I hope I never need to use the kit. However, by being proactive and preparing the contents in the kit, my odds of getting the right care at the right time are increased.

Community Care Programs For Care Partners

Caregiving can be an intensive endeavor, not to mention the physical, mental, emotional, and even financial aspects of it. Just as people with Parkinsons disease need support services, so, too, do their care partners. In this episode, Social Worker Cara Iyengar, MSW, LISW, the coordinator of the Parkinsons Foundation Center of Excellence at the University of Iowa in Iowa City, discusses some of the Foundations resources that she shares with care partners, her three-pronged approach to supporting them, some of the challenges she faces in bringing support services to people in a rural state like Iowa, and the kind of feedback that she has received from care partners.

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What Do You Do As An Ambassador For This Program

As an ambassador your main duty is to educate. We educate:

The community people with Parkinsons, care partners, and family

The clinicians who treat those with Parkinsons spread the word resources available

The hospital staff If staff know what people with Parkinsons need and why, they will be more likely to adjust the care PD patients receive.

Customized Medical Parkinsons Bracelet

TheCare Medical History Bracelet has been customized for individuals with Parkinsons. This bracelet allows you to create a personal health record which you can carry with you at all times. The bracelet has been proven to be lifesaving in emergency situations. No internet access is required. The program works directly from the bracelet and saves information to the bracelet.

To order, visit www.medicalhistorybracelet.com

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Who Can I Contact To Get More Information How Can People Get This Kit

The person that you can contact at the is Anne Wallis. She can be reached directly at .

Thank you, Ann, for your insight on this important program. Check out the Parkinsons Foundations website to find an ambassador near you.

Note: Parkinsons News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinsons News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinsons disease.