A Patient Advocate's View

Patients know when they need their Parkinson’s meds.

Here is an article that appeared in the NY Times regarding the dangers for patients with Parkinson’s who do not get their medications on time, or who get other medications that worsen the Parkinson’s and cause delirium. .

The article points out that people with Parkinson’s are hospitalized much more frequently than others their age, and their stays last longer. A common reason: “These patients aren’t getting their meds on time, and they’re not getting the right meds.” Some need to take their dopamine-replacing drugs as often as every two hours, a schedule at odds with standard hospital regimens.

Besides going to the hospital, any change in the routine of a person with Parkinson’s can cause delirium and psychotic episodes.

My client, who I will call Caroline, was living in her own apartment with 24/7 aides. She attended an adult day care program several times a week. Caroline was very attuned to when she needed her medications. Even when she went out of the house, she carried a few pills in an envelope that was marked with the name of the medications, the dosage and the time to take them.  Even without being prompted, she was aware when the Parkinson’s medication was due, because she would feel pain or trembling in her legs.

Caroline had been experiencing some unusual anxiety at night. We called the Neurologist for help. He recommended increasing the Seroquel, an anti-psychotic medication. It helped some, but Caroline was still resisting help from her aides, so the family decided she might do better in an assisted living facility.

The Assisted Living Facility offered medication management, as well as companions to take the resident to and from meals. They assured us that they were very familiar with Parkinson’s Disease and could handle her medications. Almost immediately after admission, Caroline was diagnosed with a Urinary Tract Infection.  Here is a blog post that describes what a UTI can do to a person with Parkinson’s much better than I can. “I have learned that UTI’s are very common in advanced Parkinson’s patients.  Because all the muscles of the body are implicated in this nasty disease, it is very difficult for sufferers to completely empty their bladders, always leaving behind some urine.  This creates a perfect breeding ground for bacteria.”  Here’s the link to the blog.

Once Caroline’s UTI was cleared, everything seemed to go back to normal and she was getting used to her new home. However, when I called to see how she was, she kept complaining that she wasn’t getting her meds on time. I spent a few days with her and it did seem that the meds were not being given on a regular basis and I asked about it at the nurses station. It seems that the house psychiatrist had changed the times of some of the meds because Caroline was complaining about being tired. They had changed the time of her Parkinson’s medication to fit their schedule, waking her at 5 Am to allow for the five doses a day she needed. We had given her from Stalevo every four hours from 8 AM to 10 PM.  In addition, they changed the Seroquel dose from bedtime to lunch hour.

A few weeks later, I was told that Caroline was wandering around the building and not able to function at an independent level. When I arrived at the facility, she couldn’t even put on her clothes. She was so distracted, that she wasn’t aware of where she was. On the advice of a colleague at Zucker Hillside Hospital,  I immediately took her the emergency room.

The Zucker Hillside Hospital is North Shore-LIJ’s nationally recognized behavioral health center known for its pioneering clinical, teaching and research programs. The Geriatric Psychiatry Inpatient Service is staffed by a multidisciplinary behavioral health team with special gerontological expertise.  Patient populations include elders with late-life depression, psychotic disorders, Alzheimer’s disease or a related dementing condition with concomitant serious behavioral disturbances such as agitation, aggression, paranoia, and mood abnormalities, and medical/neurological illnesses with psychiatric symptom expression.  The team at Zucker Hillside determined that Caroline was having an extreme reaction to the medications.  Several weeks later, they are still working to normalize her.  The psychiatrist explained that most assisted living memory programs are not appropriate for patients with Parkinson’s induced psychosis.  More on where people with dementia’s that are not Alzheimer’s related can best be cared for coming in our next post. In the meantime, here is a free kit that can help you prepare for a visit to the hospital or even just to keep around the house so that others can see what they must know to help the person with Parkinson’s.

The Aware in Care kit can be requested at or by calling 1-800-4PD-INFO (473-4636).

Did you know that three out of four people with Parkinson’s disease do not receive their medications on time when staying in the hospital? People with Parkinson’s visit hospitals more often, and, combined with the great importance of the timing and dosing of Parkinson’s medications, face greater risks in the hospital.

This is why the National Parkinson Foundation (NPF) has launched the Aware in Care program, which aims to help people with Parkinson’s disease get the best care possible during a hospital stay.

To protect, prepare and empower people with Parkinson’s before, during and after a hospital visit, NPF has developed a free Aware in Care kit with tools and information to share with hospital staff during a planned or emergency hospital stay.

The kit is large enough to fit your Parkinson’s medications to take with you on your next trip to the hospital.

The kit includes:

Hospital Action Plan Read about how to prepare for your next hospital visit—whether it is planned or an emergency.

Parkinson’s Disease ID Bracelet Wear your bracelet at all times in case you are in an emergency situation and cannot communicate.

Medical Alert Card Fill in your card with emergency contact information and place in your wallet.

Medication Form Complete this form and keep copies in your kit for use at the hospital.

Parkinson’s Disease Fact Sheet Share the facts about Parkinson’s with hospital staff and ask that a copy be placed in your chart.

I Have Parkinson’s Reminder Slips Share vital information about Parkinson’s disease with every member of your care team in the hospital.

Thank You Card Present this card to a staff member who provides high quality care.

Magnet Use this magnet to display a copy of your Medication Form in your hospital.


April 22, 2013 - Posted by | Uncategorized

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