Latest / Tremor & Parkinson's Surgery Explained with Dr. Wu / 5 Parkinson’s Mistakes I See Patients Regret Later

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5 Parkinson’s Mistakes I See Patients Regret Later · Tremor & Parkinson's Surgery Explained with Dr. Wu

• 0:00
  SPEAKER_00: There are five mistakes I see people with Parkinson's disease regret later.
• 0:04
  SPEAKER_00: I'm Dr.
• 0:04
  SPEAKER_00: Chunyun Wu and I'm a neurosurgeon specializing in Parkinson's disease and other movement disorders.
• 0:09
  SPEAKER_00: More often than not, I meet people after they've been dealing with Parkinson's for several years.
• 0:14
  SPEAKER_00: And there are a few things I hear over and over again that make me think, I wish we had this conversation earlier.
• 0:20
  SPEAKER_00: The problem is most of those mistakes don't feel like mistakes when you're making them.
• 0:23
  SPEAKER_00: They feel completely reasonable.
• 0:25
  SPEAKER_00: So I'm going to walk you through all five so you can make different decisions now instead of looking back a few years from now wishing you had.
• 0:32
  SPEAKER_00: Now, the first one, especially from the viewpoint of a neurosurgeon, is thinking of DBS as a last resort treatment.
• 0:38
  SPEAKER_00: People hear brain surgery and naturally assume that DBS is something you save until everything else has failed.
• 0:44
  SPEAKER_00: My team actually studied this.
• 0:45
  SPEAKER_00: We surveyed people with Parkinson's before they had ever met with a surgeon about DBS.
• 0:50
  SPEAKER_00: And most people, more than 60%, believed it should only be considered as a last resort treatment.
• 0:55
  SPEAKER_00: On the one hand, I completely understand why people think that way, but on the other hand, that is not how I want patients deciding when to get evaluated.
• 1:02
  SPEAKER_00: Because an evaluation for DBS does not mean you are agreeing to have surgery right then and there.
• 1:07
  SPEAKER_00: It just means that we are looking at where you are in the disease, what your medication is still doing for you, which symptoms are causing the most trouble, and whether surgery is even worth discussing.
• 1:16
  SPEAKER_00: There are times that I meet someone and tell them that it's too early for surgery.
• 1:20
  SPEAKER_00: And there are other times when DBS simply is not the right treatment for their symptoms and their goals.
• 1:25
  SPEAKER_00: But for those in the middle ground, if you wait until Parkinson's has become completely unbearable before surgical options are on the table, before you're even willing to have that conversation, you may be waiting much longer than you need to.
• 1:36
  SPEAKER_00: One reason I see people wait is that they have the wrong idea about what it means for their Parkinson's medications to start failing.
• 1:43
  SPEAKER_00: So that brings me to number two in terms of waiting for your medication to stop working altogether.
• 1:48
  SPEAKER_00: Sometimes I hear patients say, my medication still works, so I'm not at the point where I need anything else.
• 1:53
  SPEAKER_00: But the devil's in the details.
• 1:55
  SPEAKER_00: The question I care about is not simply whether it works.
• 1:58
  SPEAKER_00: I want to know how well it works and how long that benefit lasts.
• 2:02
  SPEAKER_00: Earlier on, you may take a dose of Levadopa and get a long stretch of good symptom control, otherwise known as on time.
• 2:08
  SPEAKER_00: As Parkinson's progresses, however, that same medication may still work very well, but the window of benefit gets shorter.
• 2:15
  SPEAKER_00: You take the medication, you wait for it to kick in, you get a few good hours, and then you start feeling it wear off again.
• 2:21
  SPEAKER_00: For some over time, more of the day gets organized around those cycles.
• 2:24
  SPEAKER_00: You start thinking about when you can leave the house, when you should eat, when you can exercise, or when you can have an appointment, all based off of when you expect your medication to be working or not working.
• 2:34
  SPEAKER_00: So to be fair, that's a different story than saying the medication has stopped working altogether.
• 2:39
  SPEAKER_00: In reality, if medication still makes a noticeable difference, that can be very useful information when we are evaluating someone for DBS.
• 2:46
  SPEAKER_00: If I can see that your stiffness, slowness, or other motor symptoms improve when Levadopa is working, but you're no longer getting that benefit consistently throughout the day, that is often when the conversation about DBS becomes more relevant.
• 2:58
  SPEAKER_00: Now there's one more important exception.
• 3:00
  SPEAKER_00: Tremor often responds to DBS even if it does not respond well to Levadopa.
• 3:04
  SPEAKER_00: So if you're waiting for the day when Levadopa does absolutely nothing, you may be waiting for the wrong milestone because at that point DBS is not likely to help.
• 3:12
  SPEAKER_00: It's too late.
• 3:13
  SPEAKER_00: Now, before I continue, if this kind of information is helpful, please subscribe to the channel.
• 3:17
  SPEAKER_00: I make these videos to answer the questions I wish more people with Parkinson's had answers to earlier in the diagnosis, before they're sitting in my office trying to make much bigger decisions.
• 3:27
  SPEAKER_00: Okay, getting back to the list.
• 3:28
  SPEAKER_00: Now, even when patients realize the medication is becoming less reliable, some still rule out DBS because they think it only helps one symptom.
• 3:36
  SPEAKER_00: We talked about how DBS helps really well for tremor, and that ultimately becomes what it is well known for.
• 3:42
  SPEAKER_00: So the third mistake I see is assuming DBS is only good for treating tremor.
• 3:47
  SPEAKER_00: So again, tremor is probably the symptom that many people think about when they hear about deep brain stimulation.
• 3:52
  SPEAKER_00: And there's good reason for that.
• 3:54
  SPEAKER_00: DBS can be very effective for tremor, and the outcomes are very impressive and really easy to see when it comes to something like a tremor.
• 4:01
  SPEAKER_00: But I also meet people whose biggest problems are stiffness, slowness of movement, or long periods of the day when their medication has worn off.
• 4:08
  SPEAKER_00: Some of these people barely have a noticeable tremor, so they assume surgery has nothing to offer them.
• 4:13
  SPEAKER_00: And that is not necessarily true.
• 4:15
  SPEAKER_00: Again, one of the best clues we have about what DBS can do for you is what happens when your medication is working.
• 4:21
  SPEAKER_00: If your stiffness or slowness improves significantly with Levadopa, but that improvement has become less reliable throughout the day, those symptoms may also respond very well to deep brain stimulation.
• 4:32
  SPEAKER_00: Now, to be clear, DBS does not help every symptom of Parkinson's, and I do not want someone hearing this and assuming surgery fixes everything because it doesn't.
• 4:40
  SPEAKER_00: But on the other end of the spectrum, I also do not want someone eliminating a treatment option, DBS, simply because their main problem is not tremor or shaking.
• 4:48
  SPEAKER_00: If your biggest problem is stiffness, slowness, or unpredictable off-periods, it can still be worth asking whether DBS belongs in the conversation.
• 4:56
  SPEAKER_00: Now, even when patients understand that, there is another reason many of them never get as far as an evaluation for DBS.
• 5:02
  SPEAKER_00: And that is, number four, letting fear of the surgery make the decision for you.
• 5:07
  SPEAKER_00: And this one is completely understandable.
• 5:09
  SPEAKER_00: It's human nature.
• 5:10
  SPEAKER_00: It is brain surgery, and I don't expect anyone to hear those words and feel happy and all warm and fuzzy inside.
• 5:16
  SPEAKER_00: The problem is when someone decides the surgery must be extraordinarily dangerous before they actually learn what the operation involves or what the risks really are.
• 5:25
  SPEAKER_00: We saw this in our own research.
• 5:26
  SPEAKER_00: More than three out of four Parkinson's patients we surveyed thought DBS was invasive, and almost half were specifically afraid of being awake during the operation.
• 5:34
  SPEAKER_00: That mental picture still stops people before the conversation even begins.
• 5:38
  SPEAKER_00: And the surgery we perform today looks very different from what those patients are imagining.
• 5:42
  SPEAKER_00: In my practice, my patients are asleep under general anesthesia during the entire surgery.
• 5:47
  SPEAKER_00: I use detailed imaging to plan where the electrodes need to go, robotic guidance to help me follow that trajectory, and imaging in the operating room to verify where the electrodes actually ended up.
• 5:57
  SPEAKER_00: I generally perform the implantation in one stage, and we usually only need to shave a limited amount of hair.
• 6:03
  SPEAKER_00: Now there are still real risks, and I go through these very carefully with every patient.
• 6:08
  SPEAKER_00: But my team has also studied the safety of DBS across thousands of procedures and compared it with some of the most common elective surgeries performed in the United States.
• 6:17
  SPEAKER_00: The main point is that the complication rate for DBS is much lower than what most people would guess when they hear the words brain surgery.
• 6:24
  SPEAKER_00: So I'm not trying to tell patients they should not be afraid.
• 6:27
  SPEAKER_00: I want them to replace that vague fear with specific questions about the current surgical options and the way DBS is done today.
• 6:34
  SPEAKER_00: What is the actual risk of bleeding?
• 6:35
  SPEAKER_00: What is the risk of infection?
• 6:37
  SPEAKER_00: What does my age or medical history change?
• 6:39
  SPEAKER_00: What symptoms are we realistically expecting to improve?
• 6:42
  SPEAKER_00: And is that potential improvement worth the surgical risk for me?
• 6:46
  SPEAKER_00: Those are questions you can actually use to make a decision.
• 6:49
  SPEAKER_00: Now, to wrap things up, the last mistake I see has nothing to do with surgery at all.
• 6:54
  SPEAKER_00: In fact, it starts much earlier.
• 6:56
  SPEAKER_00: And that is not taking exercise seriously enough early enough.
• 7:00
  SPEAKER_00: If you were diagnosed more recently and surgery is not even a consideration at this time, this point may be the most important thing on the list for you.
• 7:07
  SPEAKER_00: Exercise is not something I want Parkinson's patients saving for later.
• 7:11
  SPEAKER_00: There is meaningful evidence supporting regular aerobic exercise in Parkinson's disease, which is why I want people building that habit early while their movement is still relatively good.
• 7:20
  SPEAKER_00: Exercise is really one of the foundations of treating Parkinson's disease.
• 7:25
  SPEAKER_00: And I think it's really undervalued.
• 7:26
  SPEAKER_00: That might mean brisk walking, cycling, swimming, boxing, dancing, using an elliptical or something completely different.
• 7:33
  SPEAKER_00: The specific activity matters less than whether you actually keep doing it consistently.
• 7:38
  SPEAKER_00: And consistency here is the key.
• 7:41
  SPEAKER_00: Because once Parkinson's starts making movement harder, starting from zero becomes much more difficult.
• 7:47
  SPEAKER_00: If stiffness increases, balance becomes more difficult, and you spent several years becoming less active over time, you're now trying to manage Parkinson's while also rebuilding strength and conditioning you lost over those years along the way.
• 8:00
  SPEAKER_00: And this is something that can easily happen over time.
• 8:02
  SPEAKER_00: People may gradually stop walking as far, stop exercising as often, and stop doing activities that used to keep them active.
• 8:09
  SPEAKER_00: None of those decisions seem dramatic at the time.
• 8:11
  SPEAKER_00: Then several years go by and getting back to where they were becomes much harder.
• 8:16
  SPEAKER_00: So if you are early in your Parkinson journey and still are moving well, use that to your advantage.
• 8:21
  SPEAKER_00: Build the exercise habit before you feel like you desperately need it.
• 8:24
  SPEAKER_00: When you put all five of these things together, there is a pretty clear pattern.
• 8:28
  SPEAKER_00: People wait because nothing feels urgent yet.
• 8:30
  SPEAKER_00: The medication still works even if it is not lasting as long.
• 8:33
  SPEAKER_00: The bad periods are frustrating, but it can still work around them.
• 8:37
  SPEAKER_00: Surgery feels like something for much later.
• 8:40
  SPEAKER_00: Exercise is something they plan to get more serious about eventually.
• 8:43
  SPEAKER_00: And with Parkinson's, it is completely understandable because this happens very gradually.
• 8:48
  SPEAKER_00: You start taking a dose of medication a little earlier, or maybe you add another dose, you stop doing one activity because it has become more difficult, and after a while you stop doing another.
• 8:59
  SPEAKER_00: You begin scheduling more of your day around the hours when you feel best.
• 9:02
  SPEAKER_00: None of those changes may feel enormous by themselves, but over a few years they add up and that becomes a very different life.
• 9:10
  SPEAKER_00: That is why I do not think the answer is to rush into treatment, but the answer is to notice when what used to work is no longer working as well and ask whether your plan should change.
• 9:21
  SPEAKER_00: Maybe that means adjusting medication, getting more serious about exercise, seeing a movement disorder specialist, or getting evaluated for DBS, even if you ultimately decide not to have the surgery or not a candidate.
• 9:33
  SPEAKER_00: The patients who regret waiting usually are not telling me, I wish someone had pushed me into surgery earlier.
• 9:38
  SPEAKER_00: But instead, what I hear is something along the lines of that they wish they understood their options earlier.
• 9:45
  SPEAKER_00: And if your medication still helps, but your good periods are becoming shorter or less predictable, watch my video on when to consider Parkinson's surgery next.
• 9:52
  SPEAKER_00: That is where I top through the signs that tell me it may be time to at least get evaluated.
• 9:57
  SPEAKER_00: Until next time, bye.