My ALS Journey: 4/n

In the last three weeks, a lot happened. I was in the ALS-Ambulanz in Ulm and started a money-raising campaign.

Business as Usual

After the Christmas break, business as usual is back. I am giving a 3-day Python class this week, teaching the basics and object orientation with Python. I have a long Python history because I have taught Python since 2005.

ALS-Ambulanz

On the 11th of January, I was at the ALS-Ambulanz in Ulm. The ALS-Ambulanz is a unique center for ALS treatment.

First, they diagnosed that I have a rare variant of ALS: thoracic-onset ALS. This variant has only about 3% of all patients and is characterized by weakness of thoracic muscles as the first symptom of ALS. The good news is that this variant typically has a slow progression and stays longer local. In my case, I have a severe weakness in my thoracic muscles and both shoulders. This means I can hardly hold my head. You can see it in the image. My right hand is also slightly affected. On the contrary, my legs and my mouth are not affected. The bad news is that I have a severe diaphragm weakness due to my ALS variant. Consequently, I need a ventilator at night to support inhaling and exhaling. In two months, I will stay for a few days in Ulm to adjust the ventilator.

They also made a genetic analysis. They analyze more than 60 gens, and it takes up to 3 months to get all results. Honestly, I’m very curious because a few genetic variants of ALS can be treated.

Money-Raising Campaign for ALS Research

The research around ALS is heavily underfunded. Therefore, I started a money-raising campaign.

Get my 3-book bundle Modern C++ Collection for half the price ($70 -> $35). The coupon is valid until the 21st of January (included).

The following three books are included in this bundle: The C++ Standard Library, Concurrency with Modern C++, and C++20.

I will donate all the money to the ALS-Ambulanz. The ALS-Ambulanz is part of the Charité and is leading in the research and treatment of ALS.

Donation sum so far: $5800.

 

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    Thanks a lot to my Patreon Supporters: Matt Braun, Roman Postanciuc, Tobias Zindl, G Prvulovic, Reinhold Dröge, Abernitzke, Frank Grimm, Sakib, Broeserl, António Pina, Sergey Agafyin, Андрей Бурмистров, Jake, GS, Lawton Shoemake, Jozo Leko, John Breland, Venkat Nandam, Jose Francisco, Douglas Tinkham, Kuchlong Kuchlong, Robert Blanch, Truels Wissneth, Mario Luoni, Friedrich Huber, lennonli, Pramod Tikare Muralidhara, Peter Ware, Daniel Hufschläger, Alessandro Pezzato, Bob Perry, Satish Vangipuram, Andi Ireland, Richard Ohnemus, Michael Dunsky, Leo Goodstadt, John Wiederhirn, Yacob Cohen-Arazi, Florian Tischler, Robin Furness, Michael Young, Holger Detering, Bernd Mühlhaus, Stephen Kelley, Kyle Dean, Tusar Palauri, Juan Dent, George Liao, Daniel Ceperley, Jon T Hess, Stephen Totten, Wolfgang Fütterer, Matthias Grün, Phillip Diekmann, Ben Atakora, Ann Shatoff, Rob North, Bhavith C Achar, Marco Parri Empoli, Philipp Lenk, Charles-Jianye Chen, Keith Jeffery, Matt Godbolt, and Honey Sukesan.

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