EP 28 - The Parkinson Weekly Helpdesk

🎙️ We’re back with the twenty-eighth episode of Parkinson Weekly, hosted by Bas Bloem.

In Episode 28, we introduce a brand-new segment — the Parkinson Weekly Helpdesk — where Prof. Bloem answers listener-submitted questions from across the global Parkinson’s community. Following an overwhelming response, this new format tackles three key questions per episode, offering practical, evidence-based insights while ensuring advice remains general and applicable to all.

This first Helpdesk episode explores:

• The growing interest in methylene blue and whether there is any real clinical evidence behind its use in Parkinson’s disease
• How to regain confidence after a fall, including the role of balance confidence training and physiotherapy
• The broader topic of supplements in Parkinson’s, examining what the evidence actually shows — and where caution is needed

Prof. Bloem brings his characteristic clarity and scientific rigour to each topic, highlighting the importance of distinguishing promising theory from proven, evidence-based treatments, while also addressing the real concerns and experiences of people living with Parkinson’s.

A thoughtful and highly practical episode that marks the start of an important new initiative — designed to answer your questions, at scale.

Have a question you’d like Bas to answer in a future episode? Email us at parkinsonweekly@gmail.com – we’d love to hear from you.

Transcript

SPEAKER_00 0:01

As promised, the Parkinson Weekly Help Desk. We were thrilled to see so many questions pouring in, and actually all of them were good. As I said before, I can't address all of them, but I will address some of the most relevant ones, three each time in each episode. So here is episode 28 of Parkinson Weekly, but it's the first Parkinson Help Desk. So, our new initiative, the Parkinson Weekly Help Desk. Many thanks to all the listeners for sending in their questions. Just to explain the rules quickly one more time. First, I cannot address any personal medical questions. So if you ask me, should I increase my levitopa, should I exercise less or more, I'm unable to answer those, but I can answer questions in a more generic fashion. And although some of the questions that we have received are quite personal, I think I can tweak the answer so that all of the listeners can benefit from my recommendations and advice. And it was just really interesting to see the nature of the questions, which are fully understandable. And what I like about the help desk is that by answering one person's question, the many, many listeners to the Parkinson Weekly episodes can benefit. So this is a highly scalable solution to answering questions. So the first one is on methylene blue and Parkinson's, which I thought was a really interesting question. It's by a gentleman who said, I've had Parkinson's for two years, I'm taking Cinemat, I'm experiencing some off periods, and now I've been taking methylene blue, 1% 20 drops every other day, and he says, or she it gives me a lot more energy. And the question is, what is the evidence? Because the neurologist is apparently concerned. And I thought this was an interesting question. I must say that methylene blue was a relatively new question for me. I hear questions in my consultation room all the time about all types of treatments, supplements, new interventions. Methylene blue was a relatively new one. And the fact that for me as a Parkinson expert, that this was a relatively new question is probably a telltale sign that it has not been widely researched. And of course, I did a deep dive into the topic. And as it turns out, methylene blue is not an irrational treatment. It mainly serves to reduce oxidative stress in the brain. And this is all based on pre-clinical work, pre-clinical work meaning in cell cultures or in animal models. And the effects are encouraging in these preclinical models, suggesting it can support the action of mitochondria, and we know dysfunction of mitochondria plays a big role in Parkinson's disease, improving energy production and reducing reactive oxygen species in the brain. There's even some careful evidence to suggest it may inhibit protein aggregation, which we know is taking place in dying cells and people with Parkinson's disease. So there is some careful preclinical work to suggest that there is at least a rational part of this treatment. But so far, to the best of my knowledge, and this is probably why I had not heard of it much, is there is virtually no evidence in human beings. And any treatment that we prescribe as physicians has been taken to the test in human beings. First, healthy human beings to look for safety, then people with Parkinson's disease to look for preliminary, again, confirming safety and then looking for preliminary effects of safety, and ultimately long-term big-sized trials where an active intervention is compared to a placebo treatment, and where a treatment is not only safe but also effective, that compliance is good, and there are no harmful adverse effects. And all of this is lacking for methylene blue. Now, I am a very open-minded physician. So anything that helps people with Parkinson's disease that I see in my clinic makes me a happy man. But I will only prescribe myself a treatment that needs to tick two boxes. There needs to be a rationale, and again, there is a rationale for methylene blue. But secondly, it needs to be an evidence-based treatment, meaning it has to be taken to the test in a properly designed, randomized clinical trial, preferably two of those that confirm each other. So, my take on methylene blue is that this is an interesting intervention that should probably be tested further in trials in human beings. I would discourage listeners to use it themselves, and why? Well, you can say if it doesn't work, maybe it won't harm me. But that's not exactly true. We know of treatments like vitamins in an overdose can be toxic. So I think, and they can be costly, they can cost you money. Um, so my take on methylene blue is I would not prescribe it myself. I think it is always the decision of people with Parkinson's disease, whether or not they take it themselves, that it's ultimately your decision and not mine, but I would not encourage it, and I would actually cautiously discourage it because there is no evidence, because it may cost money, because there could be adverse effects. And I think we should all be advocates for better science in this area. If this person who asked the question wants to continue, by all means that is your decision, but I would not recommend it at this point, and I understand some of the concerns of your neurologist, and I hope that answers your question on methylene blue. So, the second question that I received was of a very different nature, namely, how about regaining confidence after a fall? And whether I have any advice. This particular person, who's 82 years old, otherwise very fit, had a fall over a year ago, which resulted in a brain bleed and a broken wrist. So very sad to hear that. And since then, this person has been struggling with confidence, even though he or she worked up with a neurophysiotherapist. This person says, I know it's largely psychological, and I'm determined not to let it hold me back. Yet there is this issue with balanced confidence. And I thought this was a beautiful question and one that I love to answer. Because yes, we know that there is such a thing as full phobia. There's even a medical term for this. So people know we know from the field that a lack of confidence can be a consequence of a deleterious fall, and it can happen even after a single fall, as was the case in this particular individual. Fear of falling is an important part of Parkinson's disease, and we've even published quite extensively about this. And fear of falling is a double-edged sword, because sometimes a fear of falling is justified. If you have a terrible balance, if you sustain regular falls, you have probably every right to be fearful of falling. And we know that, for example, in a disease called progressive supranuclear palsy or PSP, which is a variant of Parkinson's disease, it's one of the atypical Parkinsonisms. People are reckless. They are not as fearful as they should be, because PSP is the number one falling disease in the Parkinson field. And because of cognitive issues and lack of insight, people with PSP are not as fearful as they should be. So sometimes a fear of falling is understandable or even in place. But obviously, if you have sustained just a single fall, and if your gait and balance are otherwise fine, then a fear of falling, understandable as it may be, is obviously not a good thing because it will keep you from exercising enough. And if there's anything good for people with Parkinson's, it has to be exercise. So there is a strategy called balance confidence training. And people can go to a good physiotherapist and work specifically on balance confidence training. And the physiotherapist needs to judge what is your objective postural stability, what is objectively your gate ability. And if the physio feels that your balance is up to par and that you can do more than you're actually doing, given your fear of falling, then regaining your balance through balanced confidence training can be very helpful. And this may take time. And some of the balanced confidence training is actually false training, learning how to cushion the fall when you lose your balance. Some of the balanced confidence training can be the training of walking aids like a walker or a wheeled rollator, which oftentimes people in my clinic will tell me, Oh my goodness, Professor Bloom, I'm not ready for a wheeled rollator, and they sometimes feel ashamed. And again, I can fully understand. Yet using a walking aid can be a tremendous help in regaining your mobility, in regaining your confidence. Obviously, you need to train the proper use of a walking aid with a neurophysiotherapist, because sometimes people just hold the walker in the air instead of using it for support, so you need to properly train it. You need to have a wheeled relator that breaks automatically, otherwise, you might run after your wheeled relator. So it needs to be properly trained. But I think the key question: if you lose your confidence after a fall, have an objective assessment of your actual quality of your balance and gait. And if it is better than what you're actually doing, resort to balance confidence training. Maybe do some false training where with soft cushions you learn how to break the fall. This person actually had a broken wrist, which suggests that this person stretched out the arm for protection, which is in a way good, but a broken wrist is often a sign that people stretch out the arm for protection. And even though you're 82, I would say that there's still a lot to be gained through balanced confidence training. And thank you for raising this issue because I think this is something that will resonate with many people with Parkinson's disease. And that brings me to the third and final question for today, which is the use of supplements in people with Parkinson's disease. For those of you who are interested and who have access to this, we published a paper in the Lancet Neurology. The first author is Joanne Trin, that's T-R-I-N-H. I can provide the reference in the in the show notes. It was addressed in an earlier version of Parkinson Weekly. And it's about lifestyle and Parkinson's. And although the paper itself is mainly talking about exercise, stress regulation, and nutrition, there is a supplement in the supplementary files on supplements. And I know that supplements are a key issue for people with Parkinson's. And why? I think what happens when you hear those three words, you've got Parkinson's. You lose a lot of your independence. You become uncertain, you lose your own self-control. And I think supplements are a way of regaining that independence because you are the one deciding about the supplements. You make the choice, you buy them. So I understand why people often resort to supplements, and we know that the use of supplements is very widespread in the Parkinson field. The question is: are they effective? And sadly, our analysis of supplements in Parkinson's disease showed that either there was a poor rationale, or some of them had been taken to the test, like coenzyme Q10 or curcumin, and were found to be ineffective. So overall, there is not much evidence for supplements in people with Parkinson's disease. Some of them are very promising and interesting. And I'm going to mention, as an example, cannabis. Now, obviously, I'm Dutch, so you think that maybe all Dutch people are on cannabis. That's not the case. But cannabis is interesting because cannabis has a good rationale why it may work for people with Parkinson's disease, for example, in promoting sleep, in reducing pain, perhaps even reducing anxiety. But when it was taken to the test in properly designed trials, the effects were actually less good at the group level than we had expected, and there were adverse effects, cognitive adverse effects, hallucinations, impairments in driving. So this is an example of an intervention that doesn't come for free. And at the same time, we've seen at the individual level that sometimes people with Parkinson's can improve quite dramatically. So I think the jury is still out there for cannabis, although from trials at the group level it has not been proven to be very effective. Now, this person who is apparently from France has taken some supplements over the counter. This person has had Parkinson for five years, is 63 years old, is exercising regularly, is not on standard medication, only mucuna puriens and supplements. Now, next week, in the next episode of Parkinson Weekly, I will get back to you about mucuna pruriens, because that deserves a separate debate. But I will talk about the three other supplements that this person has been using. One of them is ambroxal, and ambroxal is really interesting because ambroxal is a so-called repurposed drug from the field of pulmonary disease, where it's been used in chronic obstructive pulmonary disease. But there is a good rationale why it may act on specific disease mechanisms in the brain to restore the efficacy of a certain enzyme that is deficient, particularly in people with GBA Parkinson's disease. So GBA is one of the genetic causes of Parkinson's disease. It's an autosomal dominant form of Parkinson's. It's more of a risk factor than a real cause of Parkinson's. And abnormalities in the mutations in the GBA gene are associated with dysfunction of an enzyme called glucoserebrosidase, very difficult name. But ambroxol, a repurposed drug from the pulmonary field, seems to restore the function of this enzyme and thereby could be a treatment for the specific subgroup of people with GBA Parkinson's. And there is even reason to believe that it could be effective for people with Parkinson's disease at large. But this is promising, it's encouraging, but the jury is still out there because the big trials are still ongoing. So at this point, I would not recommend ambroxal if a person asked me in my clinic. I would tell people wait for the trial, or if there's a trial on ambroxol in your area, sign up as a volunteer for the trial. But I would not encourage the use of ambroxal at this point because there is no definitive evidence in human beings with Parkinson's as of yet. Another one, which I thought was really interesting, that this person was using was nicotinamide riboside. And that's an interesting one because, like the methylene blue, there is some evidence to suggest that this may act as an antioxidant. But unlike methylene blue, this has been taken to the test in human beings in the so-called NAD park trial, which was a phase one, phase two randomized clinical trial in people with Parkinson's, where at least they showed a proof of concept, they called this target engagement, that it did something good in the brain with the levels of oxidative stress, and this was done using a particular type of brain imaging called spectroscopy. So very interesting. There were some beneficial effects in the brain's metabolism. But in that trial, they also looked for clinical outcomes, and there were no clear robust improvements in motor symptoms. In subgroups, there were maybe some very coarse signals of an effect, but this was far from definitive. So nicotinamida is further ahead than methylene blue that we talked about earlier today, but still it's too early to say that this is an effective treatment. And again, this is a treatment that I would personally not recommend at this point. I would wait for the evidence from trials to arrive. And then finally, and this is why I think this is really panning out nicely: this person is taking as a third supplement lithium, lithium orotate. I have no idea what orotate is, I'll be honest about that. But I know that lithium is a drug used in the field of psychiatry. And lithium, if it's really true that this person is using lithium, is high on my list of drugs with a bad effect on the brain that can very often cause extrapyramidal side effects, including Parkinsonism. So lithium is bad, it's not good. I would never, ever, ever prescribe lithium to a person with Parkinson's disease. So I have no idea why this person was resorting to lithium. But if this person came to my clinic and said I'm using lithium, I would say, I would urge you to stop it, because I think lithium has no good rationale as a treatment at this point for people with Parkinson's, and we know that lithium, when taken taken in doses that are used in the field of psychiatry, can have adverse effects, in particular on motor symptoms, can even cause or worsen Parkinsonism. So ambroxol, interesting, but we have to wait for trials. Nicotinamide, same, interesting, good rationale. We have to wait for evidence from trials. Lithium, I would definitely not use that, and in this case, it could actually be harmful. So those were the first three questions for the Parkinson Weekly help desk. I hope you enjoyed listening to this. I hope you found it to be helpful, and I will be back next week with the series of the three next questions. Um, and see you then next week.

SPEAKER_01 21:51

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