Latest / Tremor & Parkinson's Surgery Explained with Dr. Wu / Just Diagnosed With Parkinson's? Do This First
Transcript
- 0:00SPEAKER_00: So, you just got diagnosed with Parkinson's disease.
- 0:03SPEAKER_00: I could imagine how your head is probably spinning right now, and you're wondering what happens next?
- 0:07SPEAKER_00: Is it going to get worse?
- 0:09SPEAKER_00: And what am I supposed to do first?
- 0:11SPEAKER_00: I'm a neurosurgeon who specializes in treating people suffering from Parkinson's disease.
- 0:16SPEAKER_00: Most of the people I meet are years into their journey.
- 0:19SPEAKER_00: Now, after treating hundreds of patients, I've noticed something.
- 0:22SPEAKER_00: The people who end up doing best long term usually get a few important things right.
- 0:27SPEAKER_00: They don't overcomplicate matters, but really focus on a few important things.
- 0:31SPEAKER_00: So today I want to share with you three things that I wish every newly diagnosed patient understood about their Parkinson's and what you can actually do to help yourself along.
- 0:41SPEAKER_00: So the first thing also happens to have the strongest evidence, and that is exercise.
- 0:46SPEAKER_00: So I'm not just talking about exercise helping your symptoms, but actually the evidence suggests that exercise may slow the progression of Parkinson's disease.
- 0:55SPEAKER_00: We know that Parkinson's is a neurodegenerative disease and has an onward course where you lose neurons that produce dopamine.
- 1:03SPEAKER_00: But there are a number of studies that show that exercise in particular is one of the few things that can actually slow this progression.
- 1:10SPEAKER_00: And so that's a big statement.
- 1:12SPEAKER_00: And I don't throw those around lightly at all.
- 1:14SPEAKER_00: So you may ask, what kind of exercise?
- 1:16SPEAKER_00: Because exercise is a fairly broad term.
- 1:19SPEAKER_00: What specifically should I be doing?
- 1:21SPEAKER_00: Are there particular exercises that may be better?
- 1:24SPEAKER_00: Well, there are a couple important things here.
- 1:26SPEAKER_00: I think first and foremost is safety, because unfortunately, if you are suffering with Parkinson's, you may have symptoms that impair your balance or coordination.
- 1:35SPEAKER_00: So if you have a tendency to fall, then running on a treadmill or going for walks may be more difficult.
- 1:42SPEAKER_00: If you have difficulty coordinating and swimming, certainly swimming is not a great exercise for you.
- 1:46SPEAKER_00: So ultimately, safety comes first in terms of what you should be doing or what you could be doing in terms of exercise.
- 1:53SPEAKER_00: The next important thing is really getting your heart rate up and that you do this, that you get your heart rate up three to five times every week.
- 2:01SPEAKER_00: So ultimately, with those two things in mind, you shouldn't really necessarily overthink which exercise should be best.
- 2:07SPEAKER_00: Again, consistency is key.
- 2:09SPEAKER_00: I'd rather see you taking brisk walks three days every week than buying an expensive exercise bike that becomes ultimately a clothes hanger in your basement.
- 2:17SPEAKER_00: The best exercise is one that you can do safely and one that you enjoy so that it will be something that you're still doing six months, one year, two years from now.
- 2:26SPEAKER_00: Ultimately, the way I think about exercise for Parkinson's disease is like changing your oil on a regular basis in your car and doing that before the check engine light comes on.
- 2:35SPEAKER_00: So you're protecting the engine before the problems actually develop.
- 2:39SPEAKER_00: Okay, what's the second thing here?
- 2:41SPEAKER_00: The second thing is medication.
- 2:43SPEAKER_00: So let's talk about medication that maybe you have already started, you've been prescribed by your neurologist, or maybe you're about to just start taking your medication right now.
- 2:51SPEAKER_00: Either way, here's the question I want you to ask.
- 2:54SPEAKER_00: What is the medication actually doing?
- 2:56SPEAKER_00: How is it actually helping your Parkinson's disease?
- 2:59SPEAKER_00: So, as I briefly mentioned before, Parkinson's is a neurodegenerative disease, and it unfortunately slowly damages the cells that make a neurotransmitter called dopamine.
- 3:10SPEAKER_00: And so the less dopamine that your brain has, that your body has, the more symptoms like stiffness, slowness, and tremor, the cardinal symptoms of Parkinson's disease, those symptoms emerge with less dopamine.
- 3:23SPEAKER_00: So on face value, it seems like it would be a pretty easy fix.
- 3:27SPEAKER_00: Replace the dopamine and you fix the symptoms.
- 3:30SPEAKER_00: But unfortunately, it's not that straightforward because of the way that the body and brain can receive and absorb dopamine.
- 3:36SPEAKER_00: And that's why most people take two medications and it's often formulated or combined into a single pill.
- 3:43SPEAKER_00: Those two medications are levadopa, which becomes dopamine, and carbodopa, which helps out the levadopa and effectively blocks your body from breaking the levadopa down before it reaches your brain.
- 3:55SPEAKER_00: Now, here's what I really want you to understand.
- 3:57SPEAKER_00: The goal isn't simply to replace the dopamine.
- 4:00SPEAKER_00: The goal is to replace just the right amount of dopamine.
- 4:04SPEAKER_00: Just like any other medication, the dosing becomes very important.
- 4:07SPEAKER_00: So here's another analogy for you.
- 4:09SPEAKER_00: Think about filling a bathtub.
- 4:11SPEAKER_00: If you have too little water just at the bottom, you can't really take a bath.
- 4:15SPEAKER_00: That's Parkinson's.
- 4:16SPEAKER_00: Not enough dopamine, not enough water.
- 4:18SPEAKER_00: So when you take medications or your Carbodopa Levadopa, that becomes the faucet.
- 4:23SPEAKER_00: You're turning on the faucet to fill that bathtub.
- 4:25SPEAKER_00: And so the water starts rising.
- 4:27SPEAKER_00: And at a certain point, it's a perfect level, you can take a nice bath.
- 4:31SPEAKER_00: But if you keep that faucet on, or in other words, you keep taking more medications or your dosing is too high, and you keep filling that bathtub, eventually the bathtub overflows and you get side effects from the medications.
- 4:42SPEAKER_00: And that is most often known or seen as dying or abnormal dancing-like movements.
- 4:49SPEAKER_00: So that is too much dopamine for your brain and your body.
- 4:52SPEAKER_00: So ultimately, our goal isn't an empty bathtub.
- 4:55SPEAKER_00: It's not an overflowing bathtub.
- 4:57SPEAKER_00: It's finding the sweet spot, getting that medication level just right.
- 5:01SPEAKER_00: So now that's easier to do early on because your brain is still doing a good amount of the work.
- 5:06SPEAKER_00: It's still producing dopamine.
- 5:08SPEAKER_00: It still has those neurons, those cells that are creating your body's own source of dopamine.
- 5:13SPEAKER_00: And the medication just fills in what's missing.
- 5:16SPEAKER_00: And so that's why early in the diagnosis and early in the disease process for Parkinson's, it's fairly straightforward and medication does a great job of managing your symptoms.
- 5:27SPEAKER_00: And it's much easier to stay in that sweet spot with that analogy of the bathtub at the right level.
- 5:32SPEAKER_00: And so this brings up another point that comes up when we talk about medication and that how do you time your medication with foods?
- 5:39SPEAKER_00: So early on, when your brain is doing the line share of the work and your medications are only filling the gaps, it's okay to take your medication with a small snack.
- 5:47SPEAKER_00: That might help with the ability to tolerate medication, help with some nausea.
- 5:51SPEAKER_00: But later on, as you become more dependent on the medication because your brain is not producing as much dopamine, what you eat becomes more important.
- 5:59SPEAKER_00: And that's particularly true with protein content of food, because protein, as you digest it and eat it, can compete with levadopa.
- 6:07SPEAKER_00: And so ultimately that means less medication may ultimately reach the brain.
- 6:12SPEAKER_00: And that's why your neurologist may tell you to take your levodopa carbodopa on an empty stomach.
- 6:16SPEAKER_00: That's not just because they're trying to be difficult or making things more complex for you.
- 6:20SPEAKER_00: They're helping you stay in that sweet spot.
- 6:23SPEAKER_00: Again, back to the back-up analogy, to the right level of dopamine in your body.
- 6:28SPEAKER_00: And now, unfortunately, as I've alluded to here, is that over time, as the disease progresses and your brain loses more of those dopamine-producing neurons, your brain contributes less and less.
- 6:41SPEAKER_00: And the medication has to do more and more.
- 6:43SPEAKER_00: And suddenly keeping the bathtub at the right level becomes harder and harder.
- 6:48SPEAKER_00: And so what it may look like is that dose that used to last four hours may last three hours or two hours.
- 6:53SPEAKER_00: Now, just so that we're on the same page in terms of what we call things, when you're doing well with the medication, when your symptoms are under control, we call that a medication on state.
- 7:04SPEAKER_00: And when the medications wear off, you can imagine we call that a medication off state.
- 7:10SPEAKER_00: So on is when the medication is working, off is when the symptoms come back.
- 7:14SPEAKER_00: And as the medication has to do more of the work, those on periods become shorter and those off periods become longer, and they become more what we call fluctuations, going between off and on states, and things become less predictable.
- 7:28SPEAKER_00: So even with the same medication, same dose, different day, different circumstances, you might have different ups and downs in your motor symptoms, your tremor, your stiffness, your slowness.
- 7:40SPEAKER_00: So one mistake I do see sometimes is that because of this unpredictability, patients try to micromanage their medications on their own without a neurologist.
- 7:50SPEAKER_00: Ultimately, I think the most important thing is to work with your neurologist to figure out what works best for you.
- 7:55SPEAKER_00: Because if you start taking an extra pill or holding off from taking one because you're getting too many symptoms or you're getting dyskinetic from too much dopamine, that only feeds into the unpredictability of all the symptoms.
- 8:08SPEAKER_00: Now, managing medications can be very complex, and that's why there's an entire specialty dedicated to it.
- 8:14SPEAKER_00: I don't have that level of expertise when it comes to understanding all the different medications, how they interplay with each other, the timing, the dosing.
- 8:22SPEAKER_00: I rely heavily on my movement disorder neurology colleagues to help me with things like that.
- 8:26SPEAKER_00: And so I would strongly suggest that you do the same and that you talk with your neurologists if you feel like your symptoms are wearing off too quickly, if you feel like you are having too many fluctuations up and down, on and off.
- 8:39SPEAKER_00: Certainly bring that up.
- 8:40SPEAKER_00: See if there's a different medication, different formulation, a longer acting one, or one with a different mechanism of action, or in other words, something that works in a different way in your body that may help you better.
- 8:50SPEAKER_00: But ultimately, I don't want you to be afraid of the medication.
- 8:54SPEAKER_00: Don't be afraid of Levadopa because there is a thought that was present years ago and that people thought that we should save it and that you shouldn't take it until you really needed it and hold off as long as you can.
- 9:06SPEAKER_00: And we don't really believe that's true anymore.
- 9:08SPEAKER_00: Levadopa is not damaging your brain.
- 9:11SPEAKER_00: Again, it's replacing what your brain doesn't have enough of.
- 9:15SPEAKER_00: Again, that dopamine.
- 9:16SPEAKER_00: And so our goal is simply to find the right dose and do that at the right time.
- 9:21SPEAKER_00: And so, again, talk with your neurologist and figure out what is the best medication regimen for you and don't be afraid to start the medication because it's only going to help.
- 9:30SPEAKER_00: And by postponing it, you're only going to be suffering more with the symptoms that you have.
- 9:35SPEAKER_00: So we've talked about exercise, we've talked a little bit about medication.
- 9:38SPEAKER_00: The third thing, maybe the most important.
- 9:40SPEAKER_00: I don't want you to just pay attention to how you feel today.
- 9:43SPEAKER_00: Pay attention to how things change.
- 9:46SPEAKER_00: Make sure to work with your neurologists and keep them updated to what you are experiencing over time.
- 9:52SPEAKER_00: So giving them that information about how often you need to really take your medications.
- 9:57SPEAKER_00: Are you setting alarms to wake up at night to take your medications?
- 10:01SPEAKER_00: Are you taking your medications more frequently than prescribed, going from every six to every four to every three hours?
- 10:07SPEAKER_00: Those are really important things to discuss and to talk with your neurologists about so that the medications can be adjusted accordingly.
- 10:15SPEAKER_00: Because ultimately, they aren't just inconveniences, they are information.
- 10:19SPEAKER_00: They are telling your care team it's time for a different conversation.
- 10:23SPEAKER_00: Sometimes, when your symptoms are becoming more difficult to manage with medication alone, a general neurologist might refer you to a movement disorder specialist.
- 10:32SPEAKER_00: And eventually, for some people, you might end up going to see someone like me, a neurosurgeon.
- 10:37SPEAKER_00: Now that's where people get nervous because when they hear neurosurgeon, sometimes they believe that immediately that means that they're going to get surgery.
- 10:45SPEAKER_00: But that's not at all what it really means.
- 10:48SPEAKER_00: A referral is simply an evaluation.
- 10:50SPEAKER_00: When you come and see a neurosurgeon, someone like me, we're not going to walk in the door with a scalpel ready to go.
- 10:55SPEAKER_00: We're going to talk.
- 10:56SPEAKER_00: We're going to talk about what your symptoms are.
- 10:58SPEAKER_00: Are you the right candidate?
- 10:59SPEAKER_00: Is this the right therapy for you?
- 11:01SPEAKER_00: Do you even fulfill the criteria to be a surgical candidate?
- 11:05SPEAKER_00: There are a lot of things.
- 11:07SPEAKER_00: So being afraid of considering all your options, and some of those options may involve surgery.
- 11:12SPEAKER_00: So I'd recommend not being afraid to consider all your options because some of those options may be very helpful for you.
- 11:20SPEAKER_00: Some of them may involve surgery, some may not.
- 11:23SPEAKER_00: And ultimately, when you go see someone like me, a neurosurgeon, it's not committing to surgery, it's a discussion, it's information.
- 11:30SPEAKER_00: So go talk to them, learn your options, and then use that information to decide what is really best for you.
- 11:38SPEAKER_00: And again, it's very helpful when I see patients when they come with family members because this is a big decision.
- 11:43SPEAKER_00: Putting the burden of that decision making on yourself alone is asking a lot.
- 11:48SPEAKER_00: So go with your family, let them ask questions, let them absorb the information as well.
- 11:53SPEAKER_00: So if you're newly diagnosed, here is what I want you to remember: move your body, exercise, exercise, exercise, exercise is key.
- 12:01SPEAKER_00: I can't say it enough.
- 12:02SPEAKER_00: Understand your medication.
- 12:03SPEAKER_00: Everybody with Parkinson's has varied symptoms.
- 12:07SPEAKER_00: It's very different from person to person.
- 12:09SPEAKER_00: And so being an advocate for yourself and understanding what you need becomes important because when I work with patients, I look at it just as that a partnership, working with them, getting information from them, and then giving them information based on what I hear.
- 12:24SPEAKER_00: The more that you know and you understand the patterns that you have, the more helpful that becomes.
- 12:30SPEAKER_00: And again, watch for patterns in your symptoms, not just today's symptoms, but what are reliable patterns that you see day to day.
- 12:39SPEAKER_00: And the earlier you recognize these changes, the more options you'll likely have.
- 12:43SPEAKER_00: And that's what I want for you.
- 12:44SPEAKER_00: Not more fear about the future, but ultimately more confidence that you'll know what to look for when that time comes.
- 12:51SPEAKER_00: So if you're nearly diagnosed, hang in there.
- 12:54SPEAKER_00: I know it's difficult to digest, but I'm gonna keep making videos to help you understand exactly what to expect.
- 13:00SPEAKER_00: So if you like what you hear, please subscribe because that's exactly who this channel is for.
- 13:05SPEAKER_00: Until next time, bye.