Look for the Helpers

1429.help · 2026-10-04 · by Long Nguyen ·generic
The story behind the distance, and the work this site is here to do.

Look for the Helpers

About

Look for the Helpers

The story behind the distance, and the work this site is here to do.

1,429 miles is the Google Maps driving distance between the Mayo Clinic Gonda Building in Rochester, Minnesota, and Allagash Brewing outside Portland, Maine.

I was there for my third trip in trying to understand what caused me to go from 51 years on July 8th, to 85 years old after a fall on July 9th. Many tests across weeks to narrow down the possibilities.

At the same time I was undergoing testing, a community of friends, who are more like family, was gathering at Monktoberfest The amazing humans from Redmonk made sure to know I was being thought of and even facilitated my experiencing a bit of the wonderment that is Monktoberfest.

None of that was expected. What they couldn’t realize, we were learning the results of the tests Thursday afternoon. The love and support of the entire community gave me an escape and reminding me of the support not just available, but present.

This site is a small token to pass it on and share that support to others. I was at the Mayo Clinic only because of our advocacy to get there. To recognize when our local doctors were not willing, or able, to line up the testing to figure out what was really going on.

Lest anyone think otherwise, I also have an amazing foundation of support at home. The journey up until this week would not have been remotely possible with the support of the immediate family and friends here. Addtionally, I won the lottery of other friends from around the country who I will share when I know they are comfortable with their names being mentioned.

1429.help is beginning with the belief that advocacy is not only paperwork and appointments. It is also the people who make the road feel less lonely.

1429.help will share lived experience, educational resources, and tools. I hope it will include the voices and stories of others.

At some point, I will take on the chore of wrestling away the .org domain. I would love for this to become a charitable work supporting others in their advocacy, supporting travel, and just helping.

I’m reminded frequently that my plate is full. Weeks like this push me to make sure what is on that plate is important.

The Gun, It Smokes

Dopamine.jpg displays an axial (top-down) view of a DaTscan, a type of SPECT imaging used to visualize dopamine transporter levels in the brain. In the center, two curved, comma-like shapes represent the striatum (composed of the caudate nucleus and putamen). The shape on the right side of the image, corresponding to the left hemisphere of the brain, shows normal radiotracer uptake with a distinct bright white and yellow ‘star’ indicating high dopamine activity in the head of the caudate. The shape on the left side of the image, corresponding to the right hemisphere, exhibits noticeably reduced uptake and lacks the bright white focal intensity. This asymmetric loss of signal, particularly the missing ‘star,’ visually demonstrates a deficit in dopaminergic nerve terminals, a key clinical indicator of early Parkinsonism.

My image from my Thursday lunch time DaT Scan (Dopamine Active Tranport) at Mayo Clinic. You are looking top-down at my brain. Contrary to belief there is one. As with many medical images the sides are visually swapped. The colored arc on the left hand side of the image is my brain’s right side. You will note there is not a white star like there is on the left. Alt-text of the image has a bit more nerd if you are looking for more.

That, my friends, is the smoking gun of Parkinsonism of some type. It’s very early. And we have work to do to define the type. Every journey starts with a single step, or in my case, a single image.

1429.help · 2 images · 4 links

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