Aware in Care: How to Protect Yourself During a Hospital Stay with Parkinson's Disease

Aware in Care: How to Protect Yourself During a Hospital Stay With Parkinson's Disease
Most people assume a hospital is the safest place to be. For people with Parkinson's disease, that assumption can be dangerous. At a recent PD Talk hosted by the Parkinson's Association of Southwest Florida, Annie Brooks, director of education for the Florida Chapter of the Parkinson's Foundation, explained why hospital stays carry outsized risk for the Parkinson's community, and what a free kit can do about it.
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Of every 12 people with Parkinson's disease, about four will be hospitalized this year. Of those four, three won't receive their medication on time, every single time. Keep reading to see why that happens, and the free tools built to stop it.
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Why Are Hospitals Risky for People with Parkinson's Disease?
Hospital staff often don't know that Parkinson's medication timing is critical, that certain common medications are unsafe for Parkinson's patients, or that symptoms like hallucinations and blood pressure drops can be part of the disease. This leads to missed, delayed, omitted, or substituted medications, which the Parkinson's Foundation's free Aware in Care program is designed to help prevent.

The Data: Why Parkinson's Disease Raises Hospital Risk
Brooks shared research showing that people with Parkinson's disease are hospitalized more often than their peers and stay longer once admitted, sometimes by two days, sometimes by two weeks. Over 60 percent are discharged to a long-term care facility rather than home, and nearly 4 percent of Parkinson's-related hospital visits result in death. Brooks was direct about why: avoidable medication errors are common, and hospital staff frequently don't recognize how serious the consequences can be.
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Four Ways Medication Errors Happen
Brooks broke hospital medication errors into four categories: missed (a dose overlooked because staff didn't know to give it), omitted (skipped on purpose based on a mistaken assumption, such as before surgery), delayed (given outside the precise timing a neurologist has fine-tuned), and substituted (swapped for a different formulation, such as generic or continuous-release versions, that don't behave the same way). She compared Parkinson's medication to insulin for someone with diabetes: mistimed doses aren't a minor inconvenience, they can trigger real physical and cognitive complications.

What's Inside the Free Aware in Care Kit
The Parkinson's Foundation's Aware in Care kit includes a hospital fact sheet on medications to avoid, a wallet-sized medical alert card, a fillable medication form, a hospital action plan with admission and emergency checklists, and information cards for deep brain stimulation and Duopa. A pre-drafted doctor's letter, ready for a physician's signature, instructs hospital staff not to change medications without consulting the patient's doctor. The full kit is free to download at parkinson.org/awareincare, and a physical version with a carrying bag is available for an $8 shipping fee, which the Foundation will waive for anyone who calls its helpline.

Special Considerations Worth Flagging in Advance
Brooks highlighted two conditions hospital staff frequently overlook: hallucinations or delusions related to Parkinson's disease or its medications, and neurogenic orthostatic hypotension, a sudden drop in blood pressure upon standing that can cause lightheadedness. The kit includes space to flag both, so care teams aren't caught off guard.
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It's Not Just Hospitals: Rehab Facilities Face the Same Risk
During the Q&A, one attendee described a 21-day rehab stay where it took nearly a week to get medications correctly recorded. Brooks confirmed this is a known gap. All of the Aware in Care tools apply equally to rehab facilities, assisted living, and nursing homes, not just hospitals.

Questions People Ask
What is the Aware in Care program? Aware in Care is a free Parkinson's Foundation program that provides tools, including a medical alert card, medication form, and doctor's letter, to help people with Parkinson's disease and their care partners advocate for safe hospital care.

Why are Parkinson's patients more likely to be discharged to long-term care? Avoidable medication errors during hospitalization can worsen symptoms and complications, which the Parkinson's Foundation says contributes to fewer patients being well enough to return directly home.

Should I bring my medications in original bottles to the hospital? Yes. Most hospitals and long-term care facilities require original bottles to verify and safely dispense a patient's actual prescriptions.
Is the Aware in Care kit free? Yes. All materials are free to download at parkinson.org/awareincare, and a physical kit is available for an $8 shipping fee, which can be waived by calling the Foundation's helpline.
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Conclusion
A hospital visit with Parkinson's disease doesn't have to mean losing ground. As Brooks emphasized, the tools that make the biggest difference, a medication list, a doctor's letter, and a plan, take only a few minutes to prepare and can be used from admission through discharge. Preparing before a crisis, not during one, is what gives patients and care partners the best chance of leaving the hospital in the same shape they arrived.

​Why Support Matters
A diagnosis of any form of Parkinson's can feel overwhelming. But with the right support and resources, individuals can maintain independence, quality of life, and emotional well-being.
For resources, referrals, and support in navigating Parkinson's and related conditions, contact the Parkinson's Association of Southwest Florida at www.paswfl.org or call 239-417-3465.
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For over 25 years, PASWFL has provided free, high-quality services and programs to individuals and families touched by Parkinson's disease in Southwest Florida. Their goal is simple: help people live well with PD, regardless of where they are in their journey.

Each week, PASWFL offers more than 25 free programs and support groups, including:

• Wellness and fitness classes
• Speech Exercise classes
• Educational seminars
• Support for care partners
• Support groups

There are no fees to become a member, and PASWFL welcomes anyone touched by PD.

Take the First Step Toward Living Well
If you suspect early Parkinson's or have been recently diagnosed, you don't have to face it alone.
👉 Click here to sign up for the PASWFL newsletter
👉 Click here to become a member…it's free and confidential
To learn more, visit www.paswfl.org and discover the power of support, education, and community.
You don't have to live in SWFL to benefit from membership to the PASWFL. Membership is free and open to anyone with PD, their care partners or family members.