Episode 140: What to Do When the Next Medical Appointment is Months Away

Dan Keller 0:02 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.

It's never a good time to experience a medical problem, and we've all faced a problem at the most inconvenient time, whether it's just before a trip or between long-awaited doctor appointments, such as to see a Parkinson's specialist. So planning ahead for such a situation is critical—knowing whom to call on the Parkinson's care team, as well as having a fallback plan in the local community.

Heather Russell, nurse coordinator of the Parkinson's Foundation Center of Excellence at the London Health Sciences Center in London, Ontario, is that first point of contact for her patients when they have a Parkinson's-related problem between clinic visits. Since she is in Canada, some of her advice and protocols differ a bit from the medical systems in the US and possibly other countries, but in general, it can help you formulate a plan wherever you are for when you have a problem between appointments. First of all, how common is that?

Heather Russell 1:52 It can be quite common, even if they have just left an appointment and medications have been changed or adjusted, and they're finding that they're still having issues or side effects. They want to reach out and have someone to be able to contact and get some information, some guidance. So, I really find that we don't want the patient feeling hopeless and like there's no one to reach out to.

Dan Keller 2:13 Who should they turn to? I guess, depending on the kind of problem they're having.

Heather Russell 2:18 So, at our center, generally speaking, the phone calls, the majority come to myself because they're well aware that they are to reach out to me as the nurse, but they do call the main office as well, and then our administrative assistant would take down the information and then give that to us accordingly to be able to look at their file and then call them back.

Dan Keller 2:37 What do you do with the information? What do you tell them—whom to see or what to do?

Heather Russell 2:42 So again, it depends on the situation. If it's just a medication side effect or they're needing an adjustment to the medication, I can guide them with that myself, or I'll get the fellows to review their chart and give them a call and advise them what to do.

If it's a situation where they may cognitively be showing some quick decline or having hallucinations, those sort of things, we do advise that they go to a family doctor to get a urinalysis done, those sort of things to rule infection out before we all of a sudden just go, "Okay, we're going to treat you with medication for those situations." But we always guide them in one direction or the other.

Dan Keller 3:21 What about a neurologist? Where do they fit in, or should it be the family doctor at that point?

Heather Russell 3:26 Again, it may vary just because of being in Canada, but we cover a very broad area where people live hours and hours away, and so for many of their services, they are advised to reach out to a family doctor rather than come all the way to us just to have, like I said, a simple urine test or something like that. But if I feel like it's detrimental—they're having more falls, or cognitively we're not getting on top of it—then I will just talk to our administrative assistant, and then she'll get them in sooner than their six-month appointment, and we would have them come in.

Dan Keller 3:58 So it sounds like the family doctor is there to rule out other causes, mainly, or to deal with the medication or hallucinations, and things like that.

Heather Russell 4:06 So we prefer, actually, with our Parkinson's patients, that their medications are dealt with by us. We don't want a lot of hands dabbling in that, so we don't want necessarily the family doctor handling the Parkinson's aspect of things, because in those situations we've had quite a few issues where they're not treated properly with their medications from a family doctor.

Dan Keller 4:27 Do you have urgent care centers, and how would they fit in? I know in the States, a lot of people don't have family doctors.

Heather Russell 4:34 We do have walk-in clinics and urgent care as well, for those simple things like if you're needing a urinalysis or some routine blood work, they could go have them there. But otherwise, like I said, they would reach out to us, and we would need to get them in sooner to see us and get our hands and our eyes on them.

Dan Keller 4:52 How available are people's records? Are they sort of universally available to the medical community? Here, it's so fragmented.

Heather Russell 5:00 We do have a relatively good system set up. It's not always been this way, but we can access, especially imaging and some notes, and those sort of things across the board, like with a family physician and that, or they could give us a call and request that we give them the last note. Those sort of things are available for information purposes.

Dan Keller 5:19 So, where do pharmacists fit in, if they do?

Heather Russell 5:22 So we do get phone calls or faxes from pharmacists, especially if they're concerned with interactions with other drugs and medications, and especially if it's going to affect their QT waves cardiac-wise. That's obviously something that they're concerned about. So, we do ask that they take care of those issues for us, and we'll have that patient come and decide whether we need to continue that medication and start it, or if there is definitely going to be an interaction.

Dan Keller 5:49 Do support groups ever fit in in these situations?

Heather Russell 5:53 You know, we do have organizations—and again, ours are different than in the US—that they can reach out to and ask questions about, you know, certain medication interactions and things like that, but they're not experts generally on those things. So, as much as they're there for support and more programs, I would say probably for any medication issues and things, it's not the place to start.

Dan Keller 6:18 When do you see these kinds of problems cropping up? Someone who was recently diagnosed, or they're in mid-to-later stages of disease, or is it all over the lot?

Heather Russell 6:29 I would say the majority are probably more in the advanced stages. They've exhausted a lot of the typical just levodopa dosage, and they need more intervention, or they're having more of the fluctuations, the dyskinesia, the wearing-off effect, and they need more guidance. But we certainly do see some of the newer ones. It's so overwhelming to get that news at first that "I have Parkinson's," and that's something that I think we still need to work on—is getting them information they need, and who to reach out to, and resources for them.

Dan Keller 7:02 Do you tell your patients when they first start coming to you that you're the central resource and it should begin with you?

Heather Russell 7:10 I generally do, just because I have access to that, and I'm the easiest one to get on the telephone and can follow up on those things more so than the actual movement disorder clinic specialist. It's easier to get a hold of myself.

Dan Keller 7:24 How big is your catchment area, meaning how far and wide are your patients spread out?

Heather Russell 7:30 So we do cover most of southwestern Ontario, from Toronto west to us, and then we go all the way east to the Windsor area, and we go as far north as Thunder Bay, which is a good 18-hour drive that patients generally fly in, so we do cover quite a vast area.

Dan Keller 7:49 Thunder Bay is at the top of Lake Superior.

Heather Russell 7:52 Yes, you're correct.

Dan Keller 7:54 I've gone across there. Yeah, it is a long drive. Do you use telemedicine?

Heather Russell 8:00 We don't actually use telemedicine, and even during the COVID times, we didn't use telemedicine. My movement disorder specialist just feels that it's very difficult to assess Parkinson's patients actually without seeing them physically—to even do UPDRS, assess tone. How can you instruct anyone to do that over a video? So the majority of ours were telephone, and we always maintained somewhat of a clinic. We definitely got smaller with the lack of visitors being able to come, but we always had a clinic, and now we're getting back up to pretty close to normal capacity.

Dan Keller 8:34 I think Ray Dorsey ran a study on telemedicine and it was working out pretty well.

Heather Russell 8:40 I know a lot of centers are loving it and finding that it's working well. We just have never implemented it in our area.

Dan Keller 8:49 What kind of feedback do you get from patients on these systems you've set up when they're in need?

Heather Russell 8:55 They do find that they like the access to myself. I've had some, though, suggest that I need to be on call on the weekends, which is just not possible to do. There's a lot of other underlying issues we find, too.

The DBS patients, for instance, if they went into an emergency just in their local area, no one's going to know what to do with it. No one's going to know how to maintain it—even if they came into our hospital and a certain resident's on, they may not even know how to do things. Same with the LCIG, the PEG tube—it's different. It's not like a general GI would know how to do that. So it's very important to stress to them, and I tell most of mine, "Don't go to your local emergency department in those cases. Just do this, this, this, and then get a hold of me on Monday, and we'll get things figured out."

Dan Keller 9:40 Is there ever a fallback plan for DBS patients that they can just turn it off and go back to levodopa?

Heather Russell 9:47 DBS, I don't do that as much if they're having too much dyskinesia, things like that. Then certainly they're instructed to decrease their levodopa. The LCIG, for sure, we tell them that they can shut the pump off and take oral in the interim, or if it's blocked and they're having issues and can't run the pump, same thing—they can just go back to oral medication in the interim until we can get things sorted out.

Dan Keller 10:11 This is the gastrointestinal gel. Anything interesting to add or anything we've missed?

Heather Russell 10:16 No, I think it's just important to stress to patients not to feel stuck, not to feel that, "Oh, I have to wait till my next appointment to call my doctor and get a hold of them." I think it is very valid that they need to be taken care of, and that they know that someone's there to be able to guide them and help them.

Dan Keller 10:34 Is it helpful to have established a relationship with a patient—they know somebody at the clinic, and you know them, you know how they react, you know their medical situation, all these sorts of things?

Heather Russell 10:46 That is very helpful, of course. And if you have the rapport with them, and they know... and I think that's one thing that I love, like they'll say, "Thank you so much, I know you're there for me." They sometimes just need to know there's a voice and there's someone on the other end of the phone. They just need to know that in case they're having an issue, that someone's there to help them out.

Dan Keller 11:05 Excellent. Thank you.

Heather Russell 11:06 You're welcome.

Dan Keller 11:16 It's a good idea to make a plan with your healthcare providers about the best person to call in the event that you have a problem or concern between scheduled visits. Not only will it get you to the right person the fastest, but it's reassuring to know a name and have a phone number in case you ever need it.

As Heather said, she often refers people to their family doctors for medical problems between scheduled visits to the Parkinson's team, so make sure that your primary care doctor receives up-to-date visit notes from the Movement Disorder Center staff. If your healthcare providers use telehealth, they may be willing to schedule a visit that way as needed between appointments. For tips on how to prepare for a telehealth visit, go to parkinson.org/telemedicine. You can also search for telehealth on parkinson.org and you'll find a blog called How to Prepare for a Telemedicine Appointment.

Having an Aware and Care kit from the Parkinson's Foundation can help you organize important information for an in-person or telehealth visit, including a list of prescribed medications. You could even put a letter from your doctor into the kit that explains your medical condition and treatments. You can order an Aware and Care kit on our website by clicking on "Resources and Support" at the top of the page and selecting "Hospital Care Kits," or by calling our helpline to learn more. Please visit parkinson.org/awareandcare.

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's. 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 and 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 other week. Till next time, 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.

Heather Russell, RN, has 26 years of experience as a Neuro nurse. After 18 years of shift work, which included working at a children’s hospital and in an Epilepsy unit, she saw the opportunity for her current position as Movement Disorder Clinic Nurse for Dr. Mandar Jog and started her role at London Health Sciences Centre in 2015. Currently, her focus is on patient care and providing information on Advanced or Device Aided Therapies available. Heather is the Coordinator of the Parkinson’s Foundation Center of Excellence at the London Health Sciences Centre in London, Ontario, Canada and a CANN Member.