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Parkinson’s Aware In Care Kit

Parkinson’s In The Hospital

Parkinson’s Disease Care: Supportive & Palliative Care

This 1-hour webinar helps listeners understand the risks associated with a hospital stay when living with Parkinsons. Learn how to develop strategies to get the best possible care in the hospital and what resources are available to help you play an active role in a hospital visit, whether planned or unplanned.

Channeling Creativity Throughout The Parkinsons Journey

Many people with Parkinsons disease continue to work, socialize, and enjoy life, making accommodations as necessary to fit the disease into their lifestyles. And while no one would choose to have PD, some people have even found or created benefits of having it. One of them is Barry Blaustein, an award-winning Hollywood writer, director, and producer, who wrote several of Eddie Murphys movies and developed several of his Saturday Night Live characters, writing many of Murphys skits with his writing partner. When we spoke, he had been living with PD for five years, working during that time in Hollywood and teaching screen writing at the university level. In this episode, he describes how he has dealt with his disease, continued to work, and maintained an upbeat attitude.

  • 21 min

Hospitalization: An Action Plan To Be Aware In Care

In this 45-minute audio recording of a webinar, two neurologists discuss the results of studies showing how poorly people with Parkinson’s fare during hospitalizations. They explain the possible causes of such dismal outcomes and introduce the Aware In Care Kit and how to use it to advocate for a person with Parkinson’s in the hospital.

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Medication Management In People With Parkinson’s Disease During Surgical Admissions

In an 18-month study done at the Aberdeen Royal infirmary, UK, medical and nursing notes for PD patients admitted to surgical departments were reviewed retrospectively. Researchers found poor prescribing and incomplete drug administration were common. Measures to improve medication management are identified.

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Aware In Care Ambassadors

A 2018 survey of Aware in Care Kit users demonstrated the need for additional local support for the Aware in Care initiative.

  • More than 95 percent of responses rated the kit as useful,and 97 percent said they would recommend the kit.
  • Almost 60 percent had already recommended the kit to a loved one or community member.
  • While 80% felt confident educating hospital staff about the needs of a person with Parkinsons, only 50% received medications on time .
  • To address the need for additional education among people with Parkinsons disease and those who treat them in every corner of the community, the Parkinsons Foundation launched a new branch of the Aware in Care initiative in 2019 the Aware in Care Ambassador Program.

    Aware in Care Ambassadors are a volunteer group organized to help distribute Aware in Care kits that serve to bolster best practices in treating patients with Parkinsons disease to both patients and healthcare providers. The dedicated volunteers, selected from a competitive pool of applications, are tasked with kicking off this new program to bring Aware in Care into more communities and hospitals around the country. Modeled after the Research Advocates program, this group includes people with Parkinsons, current and former care partners, fitness providers and clinical professionals.

    The Ambassadors Program has three primary goals:

    Whats Hot In Pd Poor Medication Management Of Parkinsons Disease During Hospital Admissions: Patients And Families Can Improve Their Hospital

    This blog post sites a study in the UK which examined surgical admissions over an 18 month period. Missed medication dosages occurred in 71% of Parkinsons patients. Dopamine blockers were prescribed in 41%, and administered in 22% of cases. This study may be representative of “the norm” in hospitals around the world. Some simple fixes and the role families should take during hospitalizations are suggested.

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    When Should Parkinsons Disease Patients Go To The Emergency Room

    This three-page educational supplement points out that the emergency room works best for infections, broken bones, blood clots, and the like, but they are ill-equipped to handle Parkinson’s disease because ER doctors are not trained to know much about it. Several scenarios describe how an ER visit for a person with Parkinson’s disease can go horribly wrong, and why.

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

    Getting the Care You Need: Parkinsons in the Hospital – Tennessee and Kentucky Chapter

    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.

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    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.

    During Your Stay In Hospital

    If you have Parkinson’s, it’s important that you feel comfortable during your hospital stay and have everything you need to be able to manage your symptoms.

    When you are admitted to hospital, you will be given a named nurse. They may also be known as a key, or primary, nurse. They are responsible for your care during your stay.

    You should tell your nurse about your usual routine with Parkinsons and any specific needs you have.

    Your named nurse may be able to arrange for information about your Parkinsons and your drugs to be included on the notes at the end of your bed. This will make night nurses and other ward staff aware of your needs when your named nurse is not on duty.

    At home, you may use equipment to help with daily tasks. You should check with the hospital if you can bring these with you. Hospitals will normally have a policy on this. You can discuss your equipment at your pre-admission assessment or with your named nurse during admission.

    Using equipment or asking the ward staff to help may also make it easier for you to stay mobile.

    Wards can be busy, even at night. There can also be more lights on than you would be used to at home. Try and stick to your regular sleep routine. If ward staff know your usual routine, they can try and accommodate it as far as possible.

    You might have special requirements linked to your diet and any swallowing issues. These may include thickened fluids, pureed meals or a PEG feed .

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

      By

    • Sarah Kerson
    • 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.

    2 months ago

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    My Family Member Is In The Hospital: Now What

    Our Parkinson

    This 24-minute video provides tips on what to do when your loved one is in a hospital. The speaker addresses patient rights, knowing hospital staff, understanding the vocabulary, the importance of advance directives and having a family spokesperson, discharge planning, and post-acute care. None of the information is specific to Parkinson’s disease. Registration is required, but is free.

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    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.

    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.

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    I Am A Support Group Leader

    As a support group leader, you play a vital role in communicating critical information to people with Parkinsons, their caregivers and families.

    You can use Aware in Care materials to help you discuss the risks that people with Parkinsons face in the hospital, as well as some of the strategies available to avoid these risks and get high quality care during the next hospital visit.

    The Parkinsons Foundation recommends you take the following steps:

    Need assistance? The Parkinsons Foundation is here to help. Call us at 1-800-4PD-INFO or email .

    Management Of The Hospitalized Patient With Parkinson’s Disease: Current State Of The Field And Need For Guidelines

    Aware and Care Kit

    This literature review identifies practice gaps in the management of the hospitalized PD patient. Medications, dosages and specific dosage schedules are critical. Staff training regarding medications and medication management may help avoid complictions, particularly those related to reduced mobility, and aspiration pneumonia. Treatment of infections and return to early mobility is also critical to management.

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    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.

    The Primary Goals Of The Ambassadors Program

    Ambassadors work directly with the Parkinsons Foundation to share the Aware in Care kit with the local communities and create connections in local hospitals to help change the culture and policies around Parkinsons care. They educate hospitals and communities nationwide to make life better for people with Parkinson’s.

    Please contact us if you know someone – a friend or a family member whos struggling with Parkinsons.

    They NEED this FREE kit.

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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.

    Aware In Care Kits Reach 100000 In Distribution

    FREE Parkinson

    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?
  • What is your favorite component of the kit?
  • Interested in becoming an Aware in Care Ambassador? Applications are now open.Advocate for Parkinsons community and the Aware in Care Kit. to apply.

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    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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