Tools to navigate a hospital stay with Parkinson’s disease
Avoiding medication timing issues, other complications while inpatient
If you are at all familiar with Parkinson’s disease, you’re probably aware of the importance of medication. It’s used for symptom control only, as there is no known cure or disease-modifying therapy for Parkinson’s.
Most Parkinson’s symptoms are caused by a lack of dopamine signaling in the brain. Therefore, many Parkinson’s drugs are designed to either temporarily replenish or mimic the action of dopamine. This can help ease symptoms such as stiffness, tremor, dystonia, fatigue, and slowness of movement.
Not only is medication important for controlling and easing the debilitating symptoms of Parkinson’s, but precise timing is critical as well. Many Parkinson’s medications are used to maintain consistent and stable levels of dopamine in the brain, and delaying a dose disrupts this balance, leading to a rapid and significant worsening of symptoms.
Like many people living with Parkinson’s, my husband, Arman, is on a strict regimen of medications that are methodically planned and timed to provide him the best possible symptom control. We work very closely with our movement disorder team to determine the optimal schedule and doses.
Over the years, I have read about people with Parkinson’s experiencing difficulties with medication administration while hospitalized. According to the Parkinson’s Foundation, 3 in 4 Parkinson’s patients don’t receive their medication on time in the hospital. The organization also estimates that “every year, 1 in 6 people with Parkinson’s will experience avoidable complications in the hospital, often related to issues with medication management, mobility, and dysphagia.”
Helpful resources
Due to the multitude of challenges patients may experience while in the hospital, the Parkinson’s Foundation developed the Hospital Safety Guide. The tools and resources it includes are a must-have during a hospitalization. The key is to review and prepare them in advance of an emergency.
It is critical to advocate for your loved one with Parkinson’s disease at all times, but especially during a hospitalization. Having the necessary planning tools on hand makes this process much easier and more effective. I was able to use many of these resources during Arman’s recent hospital stay.
Hospitals are slowly catching on to the needs of people with Parkinson’s and how they differ from other patients. I learned that the main campus of our local hospital, the Cleveland Clinic, recently implemented a program to “enhance the quality and safety of care” for hospitalized Parkinson’s patients. The goal is to improve health outcomes and avoid possible complications.
I hope other hospitals will recognize the benefits of this and implement similar programs. In the meantime, I recommend being prepared for emergencies and hospitalizations.
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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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frederick feeko
This is a very good topic for me. I have been hospitalized 4 times and all 4 times my meds were not administered properly. At one time when I was first diagnosed with Pd ,
I received a kit from the Parkinson community. This described my conditions and the importance of giving the drugs at the
times. The nurses said that’s a nice kit where did you get it. Other times I brought my meds list and times, and doses, number of pills. My family members who where there
with me explained my disease and the need to keep the
schedule. The just said okay and they where on
the pharmacist schedule. So I say if your admitted have
a family member with you when possible, and check
every time they bring you meds. The reason being
they may substitute a generic, or they may not
carry a drug your on. One particular drug I am on
that the hospital never has a rasagline, we have to
get there permission to bring it to them. Then there
Rx labels it , and keeps it in a locked drawer until
your release. Is this anyway our health system
should treat us.
Sincerely
Fred
Jamie Askari
Hi Fred, thanks for sharing your experience. Unfortunately, it is all too common that patients with PD have similar stories. I am hopeful that hospitals get on board with the needs of patients with PD in terms of their medication. Thank you for reading!
-Jamie
Juliann Stephen
I'd like to know when the Cleveland Clinic actually implemented the program for hospitalized Parkinson's patients. My husband had ALIF spine surgery at the Cleveland Clinic last year and 3 felt they still were lacking in understanding of people with Parkinson's.
Jamie Askari
Hi Juliann,
I do not know when the program was implemented. That's a shame to hear that even with the program in place, it still fell short of the needs of a patient with PD.
I found this newsletter from 2023, so it seems it was around when he was hospitalized: https://my.clevelandclinic.org/-/scassets/files/org/neurological/restoration/neuro-parkinsons-newsletter-q2-2023.pdf?la=en#:~:text=Parkinson's%20Disease%20Inpatient%20Program&text=They%20review%20the%20patient's%20home,/hospital%2Dsafety%2Dkits.
I suppose, as a spouse, we are their best advocates until the hospitals get on board with the needs of PD. Thanks for reading!