Dan Keller 0:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
Most people with Parkinson's disease and their care partners know the importance of receiving their medication on time, every time, for the management of symptoms. But being admitted to a hospital presents special challenges because hospitals have their own schedules for dispensing medications. When I spoke with Rose Lang, she recounted her experience when her husband, John, broke his hip and was hospitalized. Rose, a retired pharmacist, Parkinson's care partner, and Parkinson's Foundation ambassador, stepped in to inform the hospital staff about John needing to receive his medications on his usual schedule, not according to the hospital's normal routine.
In this episode, you'll hear us mention the former Aware in Care hospital safety kit. The Parkinson's Foundation now offers the updated and improved version of the kit known as the hospital safety guide. The guide has new, vital information based on research and feedback, prioritizing what's most important: staying safe and empowered when hospitalized with Parkinson's. Similarly, you'll hear us talk about Rose as an Aware in Care ambassador. Parkinson's Foundation volunteers focused on hospital safety are now called Parkinson's Foundation ambassadors.
Rose's experience at the hospital with John showed her just how much hospital staff need to be educated about Parkinson's disease and her potential role as an advocate. She also shares her advice for other care partners, whether they have a healthcare background as she does or not.
So, Rose, what was the situation with your husband and the hospitalization?
Rose Lang 2:36
Well, my husband has Parkinson's disease, and in January of this year, he fell after getting out of bed. After evaluation by the EMT first responders, he was transported to our local hospital via ambulance, of course, not knowing the extent of his injury. That was the beginning of our firsthand experience with the challenges that exist when a Parkinson's patient is admitted to the hospital.
Dan Keller 3:02
Did your husband have an Aware in Care kit, or was this when you decided it's a good idea?
Rose Lang 3:09
Well, he's always had an Aware in Care kit since I became affiliated with the foundation. Fortunately, his Aware in Care kit and his cell phone both provided his lifeline, you might say, while he was in the ER. Because of that, he was able to administer his own meds. He had to take four doses, in fact, which was an amazing accomplishment since he had a broken hip.
Dan Keller 3:38
Yeah, I'm also surprised they allow people to take their own medication. Usually, it has to be dispensed by the hospital.
Rose Lang 3:46
That was somewhat of an issue for him, you know. There were some complications due to the current COVID pandemic when he was admitted to the ER, because at that time no one was allowed in with the patient. This can actually be a problem with all Parkinson's patients who may not be able to communicate their own needs. In our case, John was able to communicate, but the overlying problem is, in addition to any injury, the Parkinson's patient has to be regularly medicated in order to control the symptoms of their disease. In my husband's case, it was every three hours, and although he was in the ER for 10 hours, he was never provided any Parkinson's medication by the hospital staff, even though he did have written documentation of all of his meds.
Dan Keller 4:34
So, besides that, did you recognize any other problems while he was hospitalized?
Rose Lang 4:40
Well, when we breathed a sigh of relief was when he was actually admitted to the hospital room, because the nursing staff and the attending physicians at UF Health were amazing and were so willing to work with us. Initially, I did have to have some discussions, because hospitals have set regulations of how they do things. But I discussed the need to have his medications on time, every time, to prevent any problems with the symptoms, and this meant that they had to adjust their hospital schedule for giving meds.
The good thing about the Aware in Care kit was that I also had the tear-off sheets that are available to educate healthcare professionals on what the needs of the Parkinson's patient are—the characteristics of the disease, what drugs need to be avoided—and I distributed them to everyone on the staff that I came in contact with. They were most cooperative.
Dan Keller 5:38
I suppose "pills on time" sometimes might not fit into the hospital's schedule or terminology. "Four times a day" could mean every six hours, it could mean four times a day when someone's awake, or it could be at certain fixed hours. Did you have to explain this also?
Rose Lang 5:58
I actually did. Of course, having been a hospital pharmacist myself during part of my career, I was very familiar with the processes that happen in the hospital. Because there are so many patients and staff is limited, when a distribution is made of a medication, it's quote-unquote "on time" if it's an hour before or an hour after. That does not work for a Parkinson's patient. So I explained that it was necessary for him to have his own schedule. In addition, they provided his regular meds—whatever he was taking in the hospital, like pain meds, et cetera—on their schedule, but they put in a new, custom schedule of every three hours for his Parkinson's medication.
Dan Keller 6:39
You had a specialized background, and you could speak from the position of a hospital pharmacist. Do you think this approach would work as well for someone who is just a care partner but doesn't have that professional expertise?
Rose Lang 6:57
Well, I will say that the caregiver has to be committed to advocating for the Parkinson's patient, and that's the beauty of the Aware in Care kit because everything is very clearly outlined on these tear-off sheets. It explains it directly to healthcare professionals and highlights why it's so important for these things to be followed. Unfortunately, it's a regular occurrence that patients have problems because of this, and I can appreciate as a healthcare professional that you can't know everything about every disease. So, I think when it's presented as a means of education and support for patient care, any person can accomplish this.
Dan Keller 7:40
Do you think advocacy is an ongoing issue throughout the hospitalization? You can't just assume that because you explained it on day one, it's going to automatically carry over to day two through eight, or whatever.
Rose Lang 7:53
Most definitely. Several members of our support groups here in The Villages have shared their stories of similar situations where the caregiver is isolated from the patient, the patient doesn't get their meds on time, and the symptoms of the disease are exacerbated. Unfortunately, we have to continue to be vigilant. Every time we have an opportunity, we have to take that opportunity to educate not just the healthcare professionals, but the patients and the caregivers themselves.
Dan Keller 8:27
Do you think that the problems that you and John encountered, even though you were in what you described as a very good hospital with a very attentive staff, are prevalent in other hospitals?
Rose Lang 8:42
Definitely. That's one of the reasons why the Parkinson's Foundation is so committed to this Aware in Care program. In fact, they've distributed over 100,000 Aware in Care kits to patients just for that reason: to empower them to be their own advocates. This is a prevalent problem, and Parkinson's is a very prevalent disease now.
Dan Keller 9:07
But you've now become sort of a traveling educator; you're bringing this knowledge directly to other hospitals.
Rose Lang 9:14
Well, yes. Through my contacts with the staff nurses, I requested to speak with a nursing supervisor about my willingness to provide a Parkinson's in-service for their staff. Subsequently, I met with that person, and I am scheduled to present a program on Parkinson's for the nursing staff at two of our local hospitals, both affiliated with UF Health. I'm also working with the nurse educator coordinator in the rehab department to provide the same for physical therapists, occupational therapists, and speech-language pathologists.
Dan Keller 9:53
Are you sure what the nursing supervisors get is going to be effectively transmitted to their floor staff?
Rose Lang 10:01
I'm actually going to do the presentation myself. I have support from the Parkinson's Foundation, and we have slide decks and materials to distribute, so I'll be talking directly to the nurses themselves.
Dan Keller 10:15
Ah, good. Okay. What lessons are there here for other care partners?
Rose Lang 10:22
Well, the one thing that a care partner for Parkinson's has to realize is that over 300,000 Parkinson's patients are hospitalized every year. It doesn't necessarily have to be for reasons associated with Parkinson's. It could be any reason—my husband had a broken hip, it could be a heart condition, whatever. And regardless of the reasons, there is a need for the caregiver and the patient to be aware of the issues that exist when they are hospitalized.
The Aware in Care kit provides a hospitalization manual that educates the patient on what the issues are, along with the materials that I mentioned to you before. In addition, there is a medication download sheet that they can list their own meds on, and there's a hospital letter that the Parkinson's Foundation provides for the patient, which explains in writing why it's so necessary for the caregiver to be present. That is a document that can be signed by the neurologist who cares for the patient and presented to the staff when the patient is admitted. Every little bit helps. It's just an educational process—it's slow, but I think every time we impact one person, we make it better for the next person who comes in.
Dan Keller 11:47
Are the COVID restrictions still in place? I would think it would be incredibly hard to advocate for someone over the phone—trying to get nursing staff on the line or convincing them over a call how important this timing is. So, not physically being there, is that an added complication?
Rose Lang 12:05
It is definitely an added complication. Some of the COVID restrictions now have been changed. In other words, a patient that's admitted to the hospital, at least here in our area, can have one visitor, which is much better than it was during the height of the COVID problem. As far as the emergency room, I still think that's a restricted area. But you know, this translates not just to hospitals, but also to care centers and rehabs, and it continues to be a problem for Parkinson's patients.
It's very necessary for the caregiver to be there, and I think as more people are vaccinated, some of these restrictions will lessen. Obviously, coordinating over the phone is a very difficult thing. Even in doctors' offices right now, some offices are still restricting anybody from going in with a patient. I actually had that situation when John went for a recheck with the surgeon and the caregiver was not permitted. But I presented them with the letter from the Parkinson's Foundation, which explained why this was important, and I was allowed in on the very first visit.
Dan Keller 13:13
You spoke pretty highly of the Aware in Care kit. Do you see anything that should be added to it, or is it already quite comprehensive?
Rose Lang 13:21
Well, there's a lot in it already. I mean, there's a medical ID bracelet for the patient, an Aware in Care ID card for their wallet, the hospital booklet explaining what you go through in a hospital stay, and the medication tear-off sheets. There are also specialized cards there for patients who have either deep brain stimulation or a Duopa pump, which is a way to administer medications directly into the intestine, and those patients need special care in the hospital as well. So, there is quite a bit in it, and the foundation makes it very easy for patients to get this information and to get updates as they add to the inserts. Just call the 800 number. The Parkinson's Foundation is really the go-to resource, I think, for all patients and caregivers.
Dan Keller 14:13
Is there anything else important or interesting to add?
Rose Lang 14:17
Two pieces of advice. I would advise any Parkinson's patient to have a movement disorder specialist, which is a neurological specialist in Parkinson's, and I would strongly suggest that they join a support group. Support groups are very, very helpful because we all learn from each other—we help ourselves by helping others, actually. So that would be some of my advice, and then to get connected on the website with the Parkinson's Foundation.
Dan Keller 14:47
Great, thank you.
You can be prepared for a planned or unplanned hospital admission using the Parkinson's Foundation's no-cost hospital safety guide. Just visit parkinson.org/hospitalsafety, or you can call our toll-free helpline at 1-800-4PD-INFO to place an order.
I'm glad to report that John has recovered well after his hip fracture. After two weeks of intensive in-hospital rehabilitation, he had several weeks of both physical and occupational therapy at home, and is now doing outpatient PT twice a week, targeting his hip replacement. In addition, his movement disorders neurologist has ordered a physical therapy evaluation focusing specifically on PD balance issues, a leading cause of falls and fractures. Rose says that John is willing to do what it takes, and that sort of attitude really contributes to recovery.
If you have questions about this topic or anything else having to do with Parkinson's, our information specialists can provide answers in English or Spanish. You can reach them at 1-800-4PD-INFO. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback.
If you enjoyed this podcast, be sure to subscribe, rate, and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.
