Using AI to support your life with epilepsy

@dannoyes
No, I want nothing to do with AI.
How has it helped you.
Jake

@dannoyes
Hi Dan
I'm so sorry to hear you've been experiencing long COVID. That must be incredibly difficult! I hope you're receiving good medical support and feeling better soon.
AI is still quite new to me, and I'm just starting to learn more about it. I haven't yet used AI tools to help with my epilepsy journey, but I'm very interested in learning more. Like you, my memory hasn't been great lately, and I also take many notes to help when my memory fails me. However, I'm not sure I fully understand how AI tools can help with your epilepsy journey, especially with notes that have faded from your memory. Could you please explain in more detail? I'd be very interested to learn more about this.
Please take good care of yourself. Sending you my best wishes for a speedy recovery from COVID. 🙌
Chris

Thanks for your thoughts and prayers. It has been a challenging journey, but we all know epilepsy is a lifelong marathon with peaks and valleys that are unique to our condition. So to that point one of the big things that we sometimes need is "someone" to act as our assistant to help us navigate the challenges we face. First, I would never trust any of the AI tools for any direct medical advice, and most of the tools will avoid any response to a clearly medical question. So when I talk about an assistant it is really help in daily living. Is there a way that AI can help us make life a little easier? Second, the timing of this discussion is perfect because OpenAI, the developers of ChatGPT, just launched a web browser called Atlas. Atlas can help you with a variety of tasks from shopping to research. Gemini also just integrated with Chrome to provide a very similar built-in assistant. So if you can type or speak to the AI assistant about a task that you need, then it can help. Third, don't just look at AI as being a glorified search engine. The true power is just below the surface.

With Claude, Gemini, and ChatGPT you can create a custom tool that knows you, your condition, your challenges, and even whether you need the tool to speak with you like a cheerleader, a parent, a drill instructor, or just a good friend. This gives your tool "personality" and understanding about you and what you need. For example, with me, I need an encourager that can be empathetic without being toxically positive. The obvious question is how do you do this. Easy solution, just ask your AI tool? In ChatGPT you can find this under Settings | Personalization. This is where the magic happens.

Some of my instructions include: "Role & audience: You have two roles that you will be able to identify based upon my prompt. First, you are an encouraging coach who assists me daily in living with my chronic medical condition. You help me recall information, act as my librarian to keep my organized, and assist me when I have cognitive decline or brain fog. You act as my second brain. The other role you have is to serve as my professional assistant. Since I’m a veteran marketing communications professional who pivoted his career into healthcare AI due to my chronic medical condition, you help me search and write about the latest trends in clinical care and healthcare as they intersect with AI..."

The more context I provide the better results you can achieve. The instructions above can be customized to you and your needs.

Due to my epilepsy there are times I can't see very well. My sight gets blurry and I have double-vision which means I can't type. So I use a tool called AudioPen which is an iPhone app. I push the AudioPen icon on my phone and say what I want to be added into my note. AudioPen transcribes the note and cleans it up which is a huge help with brain fog. This can act as my transcriptionist.

Because I often feel like my memory fades so quickly I use a tool called Obsidian to write all my notes. Essentially, it acts as a library of everything that enters my mind. So during good days I can go back and look at my thoughts and ideas. On bad days, the best I can do is record my thoughts through AudioPen.

I feel these tools gives us a "second brain" or toolbox to get through life.

@dannoyes
Hi Dan,
Thank you so much for sharing this! It's incredibly helpful and honestly inspiring to see how you've built such a practical system for yourself. The "second brain" concept really resonates with me, especially given the cognitive challenges I also face.
I'm definitely motivated to dig deeper into AI—to create a custom tool that knows me and build my own library to make it easier to retrieve things I have trouble remembering.
As you know, I'm not very tech-savvy and still an AI beginner like many others. Have you ever thought about creating a course to help those of us with epilepsy set our "second brain"? I would absolutely be your student. Just an idea!
Continued prayers for your complete recovery from COVID 🙏🙌.
Chris

@santosha I actually do Zoom training sessions on this concept of a "second brain" and AI tools in general for medical professionals. I am just wrapping up a session specifically for those of us living with a chronic medical condition. My opinion is that unless you have a chronic medical condition, like epilepsy, these tools and concepts are short-lived at best. I'll give you a really quick example. I am working on a book about my condition and journey, combined with the smart use of AI to empower patients. When my condition is starting to spiral my eyes shut, but my brain is still functioning. So I have a recording tool on my laptop that allows me to dictate my thoughts and notes, which I can paste into my "second brain" for later. In other words, my disability doesn't mean I am disabled.

@dan Noyes
I don't want to talk to a computer or something that isn't real. What about socialization? My own personal belief is that AI is going to end up doing more harm than good.
I imagine I'm in the minority of my beliefs of AI technology though. Can you give very specific example of how AI helps you accomplish daily tasks.
Jake

Jake - I agree with you. Socialization is the bedrock. The foundation. The connection that is vital to our sense of humanity and agency. I see AI serving as a tool. Just like in a toolbox, I have various tools that I don't use (kind of smiling); I see AI as serving as just one of those tools.

What makes AI unique is that it has been programmed to handle much more complex tasks than we can replicate with ordinary productivity tools. So in my case, I have grand concepts and ideas. These ideas and concepts are what makes me Dan. The AI tool, in theory, can't replicate that level of thinking and reasoning. It can't provide context or human understanding. So I can write about sitting in a Mayo examining room and my feeling of anxiousness. The AI tool has no idea what that means. At the core it is always just 1s and 0s. It can't truly understand what it feels like, what my sentiment is when I tell someone about what makes Mayo unique. That doesn't mean it can't put together words, but that is all it is doing. Also AI can't get it really wrong. Like it "knows" Mayo is a hospital. People give blood at hospitals. So it might write that I'm sitting in a room at Mayo waiting to give blood. That is called a hallucination and this is where AI gets things really wrong and this is the heart of the limitations.

So when I talk about the value of AI for those of us with epilepsy, it is really just how it can do basic things for us, brainstorm ideas, and provide scientific research on the latest trends in epilepsy. It might be able to share ways to manage stress for people with epilepsy. In my case, it can take something I write and act as a proofreader and copy editor. AI can remind me to pace myself and remind me daily to live within guardrails. It can give me daily updates of news where my kids live and what is going on where they live around the world. It can also guide me in strategies on ways to use AI more effectively. In my mind, that is where the promise lies.

The big warning signs are hallucinations, like I mentioned previously, or the perpetuation of a problem with my thinking. For example, I have to go into a brief treatment of chemotherapy. AI supports me and tells me how great I am, but it's not going to give me a good, swift kick in the butt and tell me to "man up" like my wife did and go through the treatment regardless of what it's going to be like for the next month. This is exactly what you were saying. Human socialization is always the focus.

@dannoyes
Thank you, Dan, but I guess I’m too old and see more potential problems. There was an AI story about AI telling a wife to get a divorce.
I’m afraid countries will try to beat other countries, and the same goes for companies. I'm worried humans will be hurt, and the developers won't care. I guess you just can't teach this old dog a new trick.
I have been coping with my epilepsy for 60 years. I think I can continue to cope without AI's help for the short time I have left. I believe it's great to have a positive attitude about AI. Unfortunately, I’ve already seen far too much damage caused by computers, and I think AI will only make it worse.
At a dinner party I attended, three young people sat on the couch together but didn’t talk; they were texting each other the entire evening. I never saw any of them communicate with any guests, nor did their parents.
I do use AI, but I don't rely on it. I bought a new car this year with all sorts of safety features, and self-driving stuff, but the problem is it's not reliable. Sometimes it drives itself down the road; other times, it doesn’t. Sometimes it detects cars in your path; other times, it doesn’t.
I read that AI is supposed to detect seizures before they happen. I don't believe that for a second. I’ve seen neurologists who also thought they could predict when I’d have a seizure, but they were always wrong. I'm just concerned about the unforeseen negative consequences I believe AI will likely cause. However, I hope it helps you and others who choose to use it.
I'll be waiting for you to prove me wrong.
Take care, Dan.
Jake

Jake, I'm actually writing a book called "From Subjects to Sovereigns" for medical clinicians on precisely what you just described. Thanks for the insights. Dan

@dannoyes
Here's an improved version:
Thank you, Dan! I'm looking forward to reading your book when it's available.
Have a lovely evening,
Chris