This is the third part of my serialization of a long form presentation that I made for a facebook Parkinson’s group, about my own journey of discovery into chronic illnesses. Parts 1 and 2 are here:
Over the course of this journey, I have spent a lot of time working like an anthropologist*, using interviews of people with chronic illness diagnosis themselves, as part of my broad and deep research.
*According to google ai:
“Anthropological interviews, a key data collection method, are conducted through various techniques, including participant observation, ethnographic interviews, and structured interviews. These interviews are designed to explore cultural practices, beliefs, and behaviors, often focusing on in-depth, open-ended responses and allowing for follow-up questions.”
(I know one anthropologist who uses it to investigate how patients in hospitals thrive)
Indeed, my book is a somewhat unique take on Parkinson’s, because it consists entirely of a selection of these interviews of people with a Parkinson’s diagnosis who are bucking the current trend of decline and doing well.
The book is called “Interviews with People with Parkinson's: Clients in inspirational conversations (The Shortcut to HOPE and healing)”. You can find it on Amazon, together with very positive reviews, some of which I include in a slide in the video.
From the video:
What I found, continuing digging into people's stories and mindset and traumas, is that people with a Parkinson’s diagnosis, not always, but often, have a lot of stress. It can be everything from parents who are not very nice to a lot of people with Parkinson's setting strict rules for them (in their childhood). It can be the stress of a job, or a lot of people have been in accidents.
The ones that cannot recognize themselves in these stories may, for example, have had a job where they worked long hours and maybe business owners who just continued and continued and continued and continued pushing themselves, even if it felt good, it was still stress.
Here I have a little snippet from a woman who has read the book as well, so let's hear from her, as it's so much better to hear from people than from me, and why I wrote the book.
So I did a short interview here with Susan [a person with a Parkinson’s diagnosis] who has read the book.
Lilian: So Susan, what do you think about the book?
Susan: Well, I think it's a game changer. I really do. I think it's new information, as far as I can tell, and it's just wonderful. I bought two copies right off the bat, and I ordered three more this morning, because I want to give it to people and spread it around.
Lilian: I nearly get goosebumps when you're talking about it like that. So why is it a game changer?
Susan: Well, because people think that Parkinson's is this separate kind of thing, like you have tuberculosis or you have some other horrible thing, and it's just a collection of so many symptoms, and it responds really well to stress reduction techniques.
Lilian: So, do you agree that when I talk about it being stressors, the symptoms are connected to the stressors, does that relate to your experience?
Susan: Absolutely I am. Before I met you, I would go around my house kind of wringing my hands. It would be like this thing of, you know, being intensely in fight or flight. What am I going to do? What am I going to do? What am I going to do about this? What am I going to do? And you've helped me learn how to calm that down. And then I don't walk around the house and stumble and think like that. I sit down and breathe.
Lilian: So, what do you think now about Parkinson's?
Susan: Yeah, I don't think it's a disease. I've never thought of it as a disease. I don't know what it is exactly other than stress, but stress seems to be like a really big deal for it.
Just a last slide with some reviews from Amazon,
It's a new way of thinking about Parkinson’s. There are so many things you can do, so forget the disease label and have a look at the stress. There are so many people in this world who will help you feel hopeless and powerless. And it goes like this, you can continue that route, and you have years of experience that if you lose your hope and do nothing and just eat the pills that doctors prescribe for you, you will spiral worse. But if you take on and do whatever you can, and one thing all can do is to reduce stress, and there are so many ways you can reduce stress.
So forget things that you cannot do [anything about], because there's a lot more money in you when you cannot do anything, so there are people that want you to feel hopeless. So forget all the things you cannot do [anything about] and do the things you can instead.
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