This Parkinson’s 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 (DBS) surgery. Whether it’s 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 Parkinson’s 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.

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 Parkinson’s, 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.

It’s also a good idea to prepare a hospital action plan for your next visit, whether it’s 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 Parkinson’s disease ID bracelet in case of an emergency where the patient can’t 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 downloaded here 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.

Patients who have had DBS should bring their handheld monitor to the hospital. Although doctors may shut it off during surgery, it will be needed later.

Be aware that equipment in the operating room can cause a stimulator to shut off. You should avoid a procedure known as ultrasound diathermy, and check with your neurologist before undergoing an MRI.

Another essential piece of information to have in your kit is the name of your movement disorder and your neurologist’s name and contact information.

Also in the kit, nurse fact sheets enable vital information about Parkinson’s to be shared with every member of the hospital care team. For example, it includes a warning that the antipsychotic medication Haldol (haloperidol) should never be given to any patient with Parkinson’s.

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

All the items come in a small bag, making it easy to grab and go. The bag can easily hold a pen or pencil, a purse package of Kleenex, and other small items.

Most of all, the “Aware in Care” kit will give you peace of mind, leaving you to concentrate on getting well.

You can order your free kit at 1-800-4PD-INFO (473-4636) or at parkinson.org/AwareinCare.

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Note: Parkinson’s 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 Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.