EP 32 - The Parkinson Weekly Helpdesk

🎙️ We’re back with episode 32 of Parkinson Weekly, hosted by Prof. Bas Bloem.

In Episode 32 of Parkinson Weekly, Prof. Bas Bloem returns with the third Parkinson Weekly Helpdesk, answering three insightful questions from listeners.

This episode explores the fascinating relationship between art, dopamine, creativity, and brain function, including how art may support wellbeing in Parkinson’s disease and why future clinical trials could help define its therapeutic potential.

Bas also discusses altered perception in Parkinson’s, including hearing, vision, proprioception, posture awareness, and how practical tools such as visual feedback may help support therapy.

The episode concludes with an open and thoughtful discussion on lifespan in Parkinson’s disease. Bas explains why honest conversations about prognosis, quality of life, falls, swallowing, infections, and multidisciplinary care are essential, while also highlighting the positive impact that specialist support and services such as ParkinsonNet can have on outcomes.

A wide-ranging Helpdesk episode covering creativity, perception, realistic hope, and practical ways to support better living with Parkinson’s disease.

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_01 0:01

Hi, welcome back. This is Balsbloom, and this is your third Parkinson Weekly Help Desk, where again I'm going to address three questions, really good ones, by our listeners, and hopefully by listening to the answers, many of you will benefit. This is episode 32, the third Parkinson Weekly Help Desk. So, welcome back everybody. This is the third Parkinson Weekly Help Desk. I want to thank the many listeners, and I'm very happy to see that the number of people who are listening to the podcast is steadily increasing, and I get, I have to say, lots of positive comments. Many questions arrived. I have to select a number of them. I will do three in each help desk episode, and there were three lovely questions this time, which I will address here. So the th the first one is about the mysterious interrelationship between art, dopamine, and brain function. And the question by one of the listeners is: can we directly measure dopamine changes when people engage with art? Now I thought that is a lovely question. And I think this is technically very difficult in an individual. It is interesting that in a research project led by the University of Vienna, people are looking at changes in the brain, and in particular in the dopaminergic system, when people who are healthy are receiving dopaminergic drugs, and we're trying to test how people's creativity and also people's perception of art changes, but also how the signature in the brain changes. So I am convinced that creativity and art on the one hand and Parkinson's disease at the other end are the opposite ends of the spectrum that all revolves around dopamine. If you don't have enough dopamine, you develop Parkinson's disease. If you have a lot of dopamine, you are creative and you may become an artist. And what is really interesting, and his name has been mentioned in a previous episode of Parkinson Weekly, is that some people with Parkinson's disease who are treated with dopaminergic medication may develop for the first time in their lives creative bouts. They start to paint, start to sculpture, they may become photographers. And in fact, Paul Kroc opened up a museum at the time when he was still active in Grenoble with really outstanding beautiful art by people with Parkinson's who had never been artists but who had become artistic after they had received dopaminergic medication. Now it also raises perhaps the almost philosophical or you might even say existential question: are you then a real artist? Or are you a chemical artist? Because it was elicited by the medication. I talked about this extensively with Paul Krack, and we both feel that taking dopaminergic medication will not make you creative. You have to be intrinsically creative. So you are an artist. But if you would liken dopamine to the gasoline that is needed to run the engine, people who are low on dopamine because of Parkinson's disease cannot run their creative engine. And if you now supply dopaminergic medication, that is the gasoline that you always needed, and you can fulfill your creative abilities. So I don't think people who under the influence of dopaminergic medication become artists are chemical artists. I think they are real artists, but they would have been artists all along if they hadn't had Parkinson's disease for years and years, because we now know that the lead-up phase to Parkinson's, the so-called prodromal phase, may span 10, 20, maybe 30 years. So people were probably always low on dopamine and therefore probably less creative than they would have been otherwise. Really interesting work, in this case by my own group, has shown that if you choose to become an artist at around the age of 20, and these were two studies which we did in men, and why in men? Because women many, many years ago were not free to choose the job they liked or preferred. If men at the age of 20 opted to become an artist, they had a lower risk of developing Parkinson's disease 10, 20, 30 years later. Now you might say, oh, does art then protect against Parkinson's? Well, wouldn't that be amazing? But I actually think that is not the case. What I do think is that if you are born with a lot of dopamine, or conversely, if you have suffered, for example, a toxic insult because of environmental chemicals that deprived you of a lot of dopamine, there's already a difference in dopamine levels in the brain at age 20. And if you at the age of 20 have a lot of dopamine, that might make you creative. And that same high dopamine content in the brain will protect you from ever dropping below the critical threshold that is required to develop Parkinson's disease. And conversely, if you were already low on dopamine, you will not become an artist. So in my center and in various other places in the world, people are now studying the healing powers of art. Art is a wonderful way of expressing who you are as an individual. It provides hope, it provides consolation, and it is a wonderful way of enlarging your world in a disease where everything is constantly shrinking. When you've got Parkinson's, your steps become smaller, your voice becomes smaller, thinking becomes more difficult, and all of this leads to a gradually shrinking world. And I think art is a wonderful way of enlarging your world. So the third sort of sub-question was: what is stopping us from providing how art improves symptoms, from proving this? And I think what we need is properly designed, randomized clinical trials. I think one of the nicest papers that I ended up publishing was a paper with Blanca Spey and Lorraine Kelia. And it was entitled, If Art Were a Drug, any therapy people with Parkinson's disease receive has been taken to the test in a trial where you compare an active intervention to a so-called placebo or control intervention. And I think the time has come to study art as if it were a drug in a properly designed placebo control trial. And the good news is such a trial is in the planning phase in my own center. We're about to start the trial. We have multiple pilot studies showing the benefits of art, the healing powers of art. This is true for both creative arts, making art in a unique process of co-creation with other artists, or enjoying art. We call this receptive arts. And specifically in our trial, we're going to see whether a visit to the Rijksmuseum, which you all know is in Amsterdam, the Night Watch by Rembrandt is there, but many other famous paintings. And we suspect that either creating arts but also enjoying arts by paying a visit to the Rijksmuseum will have healing powers in that people will feel happier, healthier. And our pilot work, and I'll end here, is really interestingly showing that people who engage in art make fewer doctor visits. They visit the hospital less often. They visit the artist instead of the doctor. So maybe art could be a wonderful way of keeping healthcare affordable and sustainable for future generations in the face of a fast-growing disease and fewer and fewer younger people to look after all these people with Parkinson's disease. So stay tuned here on Parkinson Weekly for more work and more evidence on art, dopamine, and brain function. And thank you to this listener for this beautiful question. Second question that I'm going to discuss is about perception in Parkinson's. And this person asked me why is altered perception important in therapy, but not widely discussed elsewhere. And what is so fascinating, if I may use that word about Parkinson's, is that it is not just a motor disease where your own movements become more difficult, but definitely perception is also an issue. One of the earlier episodes of Parkinson Weekly was about hearing deficits. You may recall this episode that we recorded previously. That's an example of a perceptive problem. People with Parkinson don't hear their own voice well, which means when they speak softly, they don't hear it. They may go see a speech language therapist, be trained to speak louder, only to speak softly again at home because they don't hear that there is a problem with their loudness. This is why a particular app called the Voice Trainer app, which people can download, gives you visual feedback about the pitch, the height of your voice, and also the loudness of your voice, so you have this as a constant visual feedback with you on your smartphone while you are engaging in discussions in public. So another example of perception is proprioception, and proprioception is a body function whereby, even if I have my eyes closed, I know exactly where my arm is, if I put it in the air, where my leg is underneath my trunk. It is information, sensory information about the position of body parts. And again, this is impaired in people with Parkinson's. One example is that people often have a stooped posture, they are leaning forward. If you put people with Parkinson's in front of the mirror and they look at themselves in a lateral view, they say, Well, hecky darn, is that me? And they can stretch out. You remove the mirror and they start to lean forward again. So they are not fully aware of the extent to which they are stooping forward. And we know that the same sensory problem is impacting on their movements. Now, a good question, and this is the second sub-question by this listener, is should it be treated as a core symptom of Parkinson's? Well, yes, of course, we should be fully aware that perception is an issue. So it is important that therapists are aware of this. Treating the perceptive problem itself is very difficult. I honestly wouldn't know how to treat the proprioceptive problem other than perhaps through vibrate tactile therapy. But the vibrotactile therapies have been hyped, and I promise you that I will get back to you about vibrotactile therapies. Because we took one of the devices to the test, even though there were spectacular anecdotal results in a properly designed clinical trial, there was just nothing. And I am worried that some of the spectacular videos that you can find on the internet is a lot of placebo effect, and I still have to see properly designed clinical trials of vibal tactile therapy that really lead to improvements in movement. The final question by this listener is why does perception change in Parkinson's? Well, if you take hearing loss as an example, the dopaminergic system and the alpha synuclein pathology is also present in the hearing system itself. So that explains some of the hearing loss. Another explanation is that, of course, if you've got Parkinson's, you're not protected from other age-related diseases. So don't always say, Oh, I've got Parkinson's, this should be part of my disease. No. Look for maybe treatable other conditions. There might be a plug in your ear that can be removed and improve your hearing, or other age-related loss that might be treatable. And the reason why proprioceptive loss is abnormal is that if you move a joint passively, signals are transmitted to the brain, and the area of the brain where this is all processed is not processing this information properly. So it is really a part of the pathophysiology of Parkinson's disease. So it is, I think, critical that we are aware of this. It affects hearing, it affects vision. I've not talked about vision today in the interest of time, but it affects vision, it affects proprioception. You could say that the loss of smell is a perceptive deficit in Parkinson's. So yes, it is part of Parkinson's disease. We should be aware of it. Look for treatable underlying comorbid conditions and use clever tricks such as the Voice Trainer app to improve speech in case of hearing loss. So I hope that has answered that question. And finally, and I call this the elephant in the room, a third question is about the reduced lifespan. And I understand that this is a delicate and difficult issue, but we're not avoiding anything in particular here in Parkinson Weekly. If I speak to people with Parkinson's disease and their families in my clinic, I tell them you will grow old. If I speak to politicians, to fundraisers, I say Parkinson's is a deadly disease, and people lose years of their life because of this disease. And how can these two statements be reconciled? Well, they are both true. You will grow old when you've got Parkinson's. You live many, many years with Parkinson's unless, of course, something else happens, or unless you develop the disease when you're already 90 years old and you have a limited time span, lifespan to begin with. But people in general live long with Parkinson's. But in a paper that we published in NPJ Parkinson's disease, we call this the elephant in the room. And the elephant in the room is that unfortunately people do lose years of their life. The biggest loss to my mind is in quality of life. It's the loss of good years. But there's also a quantitative loss. And the younger you develop Parkinson's, the more years you lose. It's not many, many, many years, but you lose a couple of years. And obviously, the older you are when you develop Parkinson's, there's less to lose. So the absolute number of years lost is smaller in older people with Parkinson's disease. And my task as a clinician in my clinical practice is to provide hope. But at the same time, I need to provide realistic and honest hope. So the second sub-question by this listener is how do you approach this if patients don't ask directly? And in an honest and open discussion, I think lifespan and the reduced lifespan should be part of an open debate with patients and families. And I discuss it exactly in the way I do it now. I say that people have many years to go, but there is a small loss. And the way I approach it is that I think the focus should really be on quality of life and less so on quantity of life. Nobody knows how many years they will live. I don't, nobody does. What you do want to do is make them count and get the most out of it with your family, with your loved ones, with your children, with your grandchildren. Focus on quality of life, don't focus on quantity. I do mention it briefly that there is a small loss in absolute numbers of years. And I try to put it in a positive and constructive way, which was the third sub-question by this listener, by really focusing on what we can do today to improve quality of life, because I think that is what it's all about. I also talk about causes of death, which oftentimes is a fall and a hip fracture, it is swallowing difficulties and an aspiration pneumonia. Sometimes it is bladder issues, a urinary tract infection, and a sepsis, a blood infection. And those are at least to an extent preventable. So balance training, fall prevention, taking precautionary measures in your house and making the house more safe, seeing a speech language therapist not just for language but also for swallowing and the safety of swallowing, minding your bladder, taking extra vitamin C or maybe cranberries, which acidify the urine and can help reduce the risk of bladder infections, and be aware of discoloring of urine or painful peeing as an early sign of a bladder infection, and reporting this to your doctor so you can be treated with antibiotics in a timely fashion is all helping to reduce those potentially deadly complications of Parkinson's disease. So, yes, I do address the causes of death with people with Parkinson's and their families, the main reason being that I want them to be alert to these complications so that we can detect them in a timely way and try to prevent them from happening or postponing them from happening for as long as possible and thereby prolong life. And to end with a more positive note, as some of you may know, in the Netherlands we have Parkinson Net. Parkinson Net is our nationwide network of well-trained professionals from over 20 different professional disciplines who, through an intensive three-day training course, have increased their ability to manage people with Parkinson's optimally, who attract a high caseload through selective referrals and thereby become better and better and better, and who take a multidisciplinary team approach with a very person-centered care approach to supporting people with Parkinson's. Our research has shown that this not only leads to fewer disease complications, including fewer hip fractures, fewer hospital admissions, and substantially lower costs. Our latest paper in NPJ Parkinson's disease even suggests that people live longer thanks to excellent multidisciplinary allied health treatment, which makes sense. If you've got a good physio who prevents falls, if you have a good speech language therapist who prevents aspiration pneumonia, you will live longer. So that is a positive note to end this otherwise difficult element. But it's good that this person asked it. Again, I called it the elephant in the room. Needs to be discussed. I hope that I've offered some guidance for how you can discuss this in a positive and constructive way.

SPEAKER_00 21:58

You've been listening to Parkinson Weekly with Bars Bleam. If you enjoyed today's episode, subscribe now so you never miss the latest in Parkinson's research and share it with friends, colleagues, or anyone who loves the good brain story. Join us next week for another article that may impact the care for people with Parkinson's disease.