Lilian: Have any one of you tried to do the different breathing exercise.
Crissy: I tried, but I kept feeling like I was losing my breath. You know.
Lilian: Yeah. But you know, we are just starting here. So as we talked about just before that
some. Some of the things we like
some of the things we don’t like.
and again try it a couple of times.

Lilian: I will include a new relaxation exercise in each recording. Some of you enjoy repeating these exercises, while others find them boring or ineffective. We are constantly learning to check in with ourselves, asking, “How do I feel about this? Was it good, bad, or somewhere in between?” I strongly advise recording a video where you talk about your symptoms and fears for the future, as it serves as proof that what we’re doing is working. We tend to forget how we felt on specific days, like March 28th, and a video helps track progress. When we make a video, we can see tension in our face, hear fear in our voice, and notice nonverbal changes, showing improvement over time. If you don’t do it, you miss these benefits and may feel like nothing has changed. One goal is to start trusting the future more. Always email me with questions or ask during these sessions. Worrying is like predicting the worst-case scenario, which was a survival mechanism in the wild to prepare for dangers like tigers or harsh winters. Today, we live in safe houses, but our brains still predict problems. Reframing worry as a superpower can shift how you feel about it. Symptoms are your friends, warning you of stress, like a manuscript with a hole—maybe you forgot your toothbrush or didn’t prepare enough for guests. The symptom diary helps track symptoms and uncover their causes, like why painting caused more stress on certain days. It’s not just knowledge; doing the work leads to improvement, like cooking from a recipe instead of just reading it. Measuring symptoms is key because small improvements, like 1-5%, are hard to notice without tracking. Sleep reflects the previous day’s stress—calm days lead to better sleep, while stressful days or excitement about the next day can disrupt it. Hobbies like knitting or painting help you focus on the present, reducing symptoms by keeping you out of your head. Stress significantly impacts Parkinson’s symptoms, as seen in Andy’s story of tremoring at a funeral due to traffic stress and fear of being watched. The symptom diary tracks the intensity, situation, and emotions behind symptoms, like shame or embarrassment. Parkinson’s patients often prefer arriving early to avoid stress, and being late can trigger self-punishment or fear of judgment. Coffee, even decaf, can increase stress, and stimulants like chocolate or cigarettes affect dopamine, sometimes worsening symptoms. Exercise is beneficial only if you enjoy it; otherwise, it adds stress. Social connections, like Chrissy and Mila’s, are vital for sharing experiences and reducing fear.

Chrissy: I haven’t recorded a video yet, but it’s on my to-do list, and it makes sense. The symptom diary has been really helpful for tracking symptoms. Sometimes I think my symptoms are worse, but checking the diary shows they’ve been steady, which reassures me. It also helps me identify triggers from specific days. My main trigger is worry, which often feels catastrophic but rarely pans out. I’m learning to stop myself and make accommodations, though I’m not great at it yet. Reframing worry as a superpower, like a positive heroic trait, is challenging, but I’ll try shifting my perspective. The diary helps me see connections, like what might have worsened symptoms on a given day. I modified the diary template to include more space for descriptions, which made it easier to use. Mila and I have become close, texting often and discovering we share many things in common, which has been a joy.

Claudia: The symptom diary has shown me that sleep greatly affects my tremors. Good sleep leads to better mornings, while bad sleep makes tremors worse. I’ve tried melatonin, but I’m learning it can backfire by reducing my body’s natural production. I’m working on identifying what causes bad sleep, like too many stressful appointments. Knitting and crocheting eliminate my tremors, likely because they’re repetitive and calming, keeping me focused on the present. I relate to Andy’s story about stress worsening tremors, as I feel nervous and my tremors increase when I’m in a room with strangers who might notice them. This feels more like annoyance than fear, like I want to say, “Don’t look at me.” I prefer arriving early to events to stay relaxed and avoid the stress of being late.

Mila: I haven’t started the symptom diary yet, despite planning to, but I’m inspired by Chrissy’s experience. Sometimes painting causes no symptoms, while other times it triggers many, and the diary could help me understand why. I love coffee but switched to decaf, which tastes the same and doesn’t cause symptoms. Andy’s funeral story shows intense tremors, likely a 10 on the scale, caused by stress from traffic and the funeral setting. Meeting Chrissy in person has been wonderful—we text constantly, share many interests, and understand each other deeply, like lifelong friends.

John: I was in a breakout room with Chrissy, where she shared that worry is her main trigger. In Andy’s story, arriving just in time for the funeral could be seen as perfect timing, which might have reduced stress if viewed positively. People with Parkinson’s likely prefer arriving 15 minutes early to avoid stress.

Bernhard: Stress significantly impacts my symptoms, as I experienced during an exhibition in Paris where stiffness and embarrassment led me to lie about a sports injury. Taking extra L-dopa helped in low-stress situations but failed under stress, showing stress can overpower medication. Coffee, chocolate, and cigarettes affect dopamine, but smoking now makes me feel so bad I need to lie down, likely due to addiction. Exercise, like boxing, is recommended, but it can cause stress if the environment is competitive or trainers add pressure. I’m planning a month-long break from my routine to reassess what works. The symptom diary is crucial for reflecting on what triggers worse symptoms.

Andy: At my uncle’s funeral last year, I experienced intense tremors, like shaking like a jelly, due to stress from traffic delays and feeling exposed in a packed church where I thought everyone was watching me. The next day, with the same medication and no stress, I had no tremors, proving stress significantly worsens symptoms.

Lilian: when you think about the symptom diary was, how big was his tremor.
Mila : Well, it sounded like it was very intense, so I would give it on the scale from one to 10. He shook like a jelly.
Lilian: And what was the situation?
Mila: There were a funeral.
Here is the cleaned-up version of the provided text, with each person mentioned only once, followed by a colon, and organized into complete sentences:

Claudia: Andy was running late for the funeral because of traffic, which caused more stress as he worried about people watching him and noticing his tremors in the church. I experience something similar when I’m in a room with strangers and my tremors worsen, feeling nervous and annoyed, like I want to say, “Don’t look at me.” This annoyance, rather than fear, stems from feeling like I’m not behaving as I should, which aligns with emotions like shame or embarrassment.

Lilian: Andy likely built up stress from traffic and road work, fearing he wouldn’t reach the church in time for the funeral, compounded by his worry about missing it entirely. In the church, his stress increased due to feeling watched by others, believing, “Oh no, they are watching me,” which intensified his tremors. The symptom diary prompts us to note what Andy believed—fear that people were watching him—and the resulting emotions, likely shame or embarrassment, as he felt he wasn’t behaving as expected. The next day, with no stress and the same medication, Andy had no tremors, showing how stress visibly worsened his symptoms. The stress began before the funeral, with constant time-checking and worries about being late or disrupting the event, amplifying his sense of shame, embarrassment, or fear of looking different.

John: Andy’s belief that people were watching him added extra stress, contributing to his intense tremors during the funeral.

Mila: The emotion Andy likely felt, given his intense tremors and fear of being watched, could be fear, similar to what others experience in such situations.

John: Andy arrived just in time for the funeral, and if he had viewed this as perfect timing, he might not have been stressed. People with Parkinson’s likely prefer to arrive 15 minutes early to avoid stress.

Lilian: Most people plan to arrive early, about 15 minutes before an event, to find parking, settle in, and feel relaxed, but some see arriving exactly on time as ideal, while others don’t mind being 15 minutes late. I’d guess over 90% of people with Parkinson’s prefer arriving early to stay calm. Being late can lead to self-punishment, with thoughts like, “They won’t like me” or “They’ll blame me,” which adds stress. Andy’s funeral story illustrates how stress from being nearly late and fearing judgment worsened his symptoms. Coffee, even decaf, can increase stress and exacerbate symptoms for some people.

Claudia: People with Parkinson’s probably prefer arriving early to events to stay relaxed. If I saw someone arrive late to the church, I’d think, “They’re just late,” without much judgment. Some people, however, might feel that tardiness ruins the event or disturbs others, which is why many avoid being late themselves.

Mila: I love coffee but switched to decaf, which I now enjoy just as much as regular coffee, and it doesn’t cause any symptoms.
Lilian: They? I guess they are different brands, and different, how good they are at at dragging coffein out!
Lilian: Did you talk about this about stress has an impact
in Parkinson and Andy’s story. Is there any comments on that.
Here’s the cleaned-up Zoom text with colons after names and minor formatting adjustments for clarity:

Bernhard: 40:17
Yes, we did. I mean, we absolutely agree. We have our stories and how stress impacts our symptoms. We talked about that before already. And yeah, I think it’s absolutely true for myself.

Lilian: And you know, maybe one day I have to change my course because everybody knows that it’s stress-related. So I can jump through.

Bernhard Yeah. And I told Miller the story when I was back in Paris for this exhibition, and I had really the stiffness. I got a lot of excitement because I was embarrassed in a way moving around like that. And I told everyone that’s a sports injury. The doctor back here in Vienna told me when I get into such a situation, I should take more L-dopa. I tried this before I went to Paris just to try it, and it worked perfectly. I felt like light movements. But when I was in Paris and I had this stress situation, it didn’t work at all. So I told the doctor, and she said, “Yeah, it could be. The stress is stronger than the medication.” Most of your medication is dopamine, I guess.

Lilian: So how do you think dopamine and coffee? Now we talked about coffee. How are dopamine and coffee related?

Bernhard: I think it gives you dopamine, like if you take chocolate or something like that.

Lilian: Most old-fashioned stimulants push our dopamine. So it’s everything, from chocolate to coffee, to cigarettes, to alcohol, to heroin, to cocaine.

Bernhard: But we also talked about cigarettes because I used to smoke, and I stopped, of course, in a way. But sometimes when I go to my studio, I have this ritual to smoke one cigarette or a maximum of two, and I feel so bad afterward that I have to lie down for 10 minutes. So I don’t really understand why, but it has a major impact on my body. So many bad things.
Yeah, anyway, it’s stupid to do that. It’s addiction.

Lilian: But when we talk about addiction, that’s dopamine playing its game.

Bernhard: Be your expectation. What do you need to do in that class?

Bernhard: It’s a normal boxing class, for example.

Lilian: Yeah, but trust me, I would get symptomatic if I joined one.

Bernhard: Yeah, I don’t know.

Lilian: So it becomes, if you can do overtraining in all sports.

Bernhard: Yeah, but I don’t train that hard, you know. I just try to keep up in a way.

Lilian: But then you ask yourself, are there nice people around you? Do you compare yourself to others and say, “Oh, no, I’m not as good as he is”? I’ve heard from a client who went to boxing in Denmark. The trainers were not equipped well enough, so they blamed her for not doing it well enough. They put pressure on her, and that was not fun. So she got more and more symptoms. She went there because she liked the social company, but the trainers put pressure on her. So she had to stop because she wasn’t good at Cross Boxing, and the trainer said, “You need to do it more. Come on, you can do it.” That’s not fun; that’s putting pressure.

Bernhard: That’s not fun. But in my case, I’m not sure if it’s the pressure, maybe, but it’s also really a physical thing. I feel like my muscles get…

Lilian: It sounds like you had a regime of many things you did.

Bernhard: Yeah, I read a lot about the illness, and everywhere you read, it says the most important thing is doing exercise, you know. That’s the most.

Lilian: And it’s not how, if you don’t feel like it, it injects you with stress. If you like it, it’s probably good for you. If you dislike it, it’s the worst you can do. That’s what the whole world hasn’t figured out. It’s about stress. It’s not about biking or boxing or dancing.

Bernhard: Yeah, it took me one year to find it. And so now I’m ready to take a break for one month and see what’s happening and where I go afterward.
I mean, they do walking or slow, normal walking, or things like that, or biking. But please do the diary because I don’t enlighten you to, because it pushes you a little to sit down and think about what happened.

Lilian: When the symptoms were the worst, what happened there, or the hours before? As I’ve written on this one, fear, worries, thinking, pressure, embarrassment, blame, and excitement are typical things that can push you into fight, flight, or freeze. And in the bigger picture, all emotions can push you into stress, even the good ones. We’ll come back to that a little more. Then I figured out, as time goes by, that being together in a group or with a person is very important. So Chrissy and Mila are coming in again. Have you talked more? You actually met in person.

Chrissy: Yes, we did. It’s been just a complete joy to have Mila as my buddy. We text each other all the time about anything, and we’ve discovered that we share many, many things in common. It’s almost scary how many things we share. It’s not scary, but it’s good.

Mila: Yeah, it’s been absolutely wonderful. It’s like I found a new friend who can understand me completely. It seems like we’ve known each other for a long, long time; it’s so easy.

Lilian: And you can say you also have this Parkinson’s thing in common. So the reason you are here, it’s the reason why you have more fear for the future, and so on. That’s also a dimension. So I hope you have watched the videos. We can probably find someone who can help you guys maybe do the homework together or have a chat here and there. There’s 1 in 1,000 that has Parkinson’s and 1 in 10 that have alternative beliefs about things. When you combine that, it’s 1 in 10,000 that have both Parkinson’s and alternative beliefs. So it’s difficult to find like-minded people. Give it a thought. It’s not such a big group we have this time, but life gets easier when we have someone to share thoughts with. Are there any more questions? The content has sort of come to an end. Any practical questions? You can always send an email to me via Discord, and then we have the Hope Course. That’s my first standalone course, where we make some cross-references to that and the most important things I’ve pulled into the course. So you don’t necessarily need to go to it, but you have access to it. The whole course is about understanding that we have symptoms that come from our ancestors and our mammals, and how the toolbox works, and how the guys who improve around the world use it. It’s not one thing; it’s not boxing, dancing, or biking. It’s some knowledge plus some tools that can either rip you out of your stress or help make it smaller..