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About

What began as a simple exercise to more effectively track the portions, cost, and planning of my meals turned into something I've been thinking of doing for quite some time. I like to think that I've learned a thing or two over the years. This will be a place to capture some of those experiences, sometimes in the form of a journal entry, other times with more focused articles.

Who I Am

I'm John. I'm a 55-year-old guy with MS living independently in Madison, Wisconsin. I use a wheelchair, lead an active and enriching life, and truly believe that my MS diagnosis has changed me for the better.

It's been long, strange trip getting here, but I have arrived at a place of motivation, self-awareness, gratitude, strength, and peace I wouldn't have thought existed. Living with chronic illness and seeing the world from a wheelchair offers me a viewpoint and perspective most people aren't afforded.

I'm also not just a guy in a wheelchair with MS. I have a variety of interests. I'm a huge technologist and have worked in IT my entire career. I have a sweet home lab setup for a bunch of DevOps/AI/automation/programming experiments. I'm firmly entrenched in Home Assistant, which provides structure and accessibility (and a bunch of cool & fun stuff) through automation. I have a very tight and small group of friends that I spend time with. I have a wonderful partner Robert who, like me, firmly believes in LAT, living apart together.

Work has been a very important part of my life for my entire life. Very recently I realized that work and taking care of myself are mutually exclusive. So I'm currently taking medical leave at the advice of my neurologist and the rest of my healthcare providers. That's a future series of articles by itself.

My MS Journey

I was diagnosed with MS in 2009. My gait was the first thing that clued me in to know that something was amiss. I had prior lower back issues, so I initially attributed it to that and didn't think much of it. Finally went in, had some MRI work, and then got the call saying, "Your back is fine, but we think you have MS." Thus begins the journey.

In hindsight, one thing I thought was interesting is I was playing a lot of Wii Sports at the time and I failed miserably at all of the balance board activities. Who would have thought that that was a good indicator/test for MS?

Immediately upon diagnosis, I began taking Rebif. MRI Showed lesions in both the brain and the spinal cord, enough to jump on MS drugs right away. At this point in my life, I was not taking very good care of myself. I was rigorous on the three times a week injections and got roped into PT. The first few years were a little tough as I wasn't in a supportive environment, and I didn't have the capacity to dedicate the resources to bettering my health that in hindsight I should have done. I pushed through work, I went through the motions with PT, and I coped, but I was definitely in survival mode. These are the "before" years.

Over those years, I went the path from cane to walking sticks to walker to wheelchair. From Rebif to Copaxone (to try and shake things up), then Tysabri, and now Ocrevus.

I had a wake-up call about seven years ago, and decided it was time to get busy living. Not being one to lean into anything, I made some drastic decisions and immediately made some significant life choices:

  • Stop taking all the prescriptions I didn't need (Ritalin, Benzos, Opioids, Gabapentin)
  • Use CPAP machine without compromise
  • No drugs or alcohol
  • Vegan
  • No sugar
  • Gym 5-6x/week
  • Good sleep before anything

My Philosophy

[Your philosophy on wellness - why the holistic approach matters to you]

Why I Created This Guide

[Your motivation for creating and sharing this guide]

Tools That Help

Living well with MS means finding tools and adaptations that work for your body. Here are some that make my daily life easier:

Mobility

  • TiLite Aero Z - My ultralight aluminum wheelchair. Custom-built to my measurements through TiLite's TiFit process. The mono-tube frame design is durable and easy to transport.
  • Smoov One - Power assist by Alber that docks underneath my chair. Up to 12-mile range, 6 mph top speed, handles hills and rough terrain. Bluetooth control lets me adjust speed on the fly.
  • National Seating and Mobility - My wheelchair provider here in Madison. They handle fittings, adjustments, and repairs.

Home & Independence

  • Toto Washlet - Bidet toilet seat. Warm water, heated seat, air dry. Significantly improves bathroom independence.
  • Tempur-Pedic Ergo ProSmart - Adjustable bed base with zero-gravity positioning. Helps with comfort, circulation, and getting in/out of bed.

Technology

  • Home Assistant - Open-source smart home platform. Voice control for lights, climate, and more. Reduces the physical effort of managing the house.
  • Wispr Flow - Voice transcription software that lets me write without typing. I used it to create much of this guide.

My Workflow

This site was built using Claude Code, Anthropic's AI-powered development tool. I use Claude as a collaborator - I describe what I want, and Claude helps scaffold the structure, write the code, and handle the technical details.

Here's how my workflow looks:

Building the Site

  1. I started with my existing Word documents and Excel spreadsheets - the nutrition guide, fitness program, and meal cost tracker I'd already developed
  2. Claude converted these into a static documentation site using MkDocs with the Material theme
  3. We iterated together - I'd review locally, suggest changes, and Claude would implement them
  4. Each feature gets tracked as a GitHub Issue, developed on a feature branch, and merged via pull request

Adding Content

When I want to add or update content:

  1. I dictate using Wispr Flow - my voice becomes text without typing
  2. Claude helps format it properly for the site
  3. I review locally (devbox run serve), then approve the changes
  4. Claude commits and creates a PR, and the site auto-deploys

Journal Entries

For journal posts, I simply:

  1. Create a new markdown file in docs/journal/posts/ with today's date
  2. Dictate my thoughts using Wispr Flow
  3. Commit and push - the site rebuilds automatically

This workflow lets me focus on the content - my story, my experiences, my insights - while Claude handles the technical scaffolding. It's a good division of labor for someone whose hands don't always cooperate.

Technologies Used

For the technically curious, here's the stack:

  • MkDocs - Static site generator designed for documentation
  • Material for MkDocs - Theme with dark mode, search, and the blog plugin for the journal
  • Devbox - Reproducible development environment using Nix. One command (devbox shell) gives me all the tools I need
  • GitHub Actions - Automatic deployment to GitHub Pages on every push to main
  • GitHub Pages - Free hosting for the static site

The site also uses MkDocs extensions for better formatting: tables, admonitions (the colored callout boxes), and emoji support for icons.

Everything is open source. The repository is public if you want to see how it's built.

Acknowledgments

[Your acknowledgments - Robert, your healthcare team, others who support you]

This guide is my personal approach to wellness with MS. It's not medical advice - work with your own healthcare team to find what works for you.