<story><title>What Happened to Lee</title><url>https://wired.com/story/lee-holloway-devastating-decline-brilliant-young-coder/</url></story><parent_chain><item><author>billti</author><text>&amp;gt; The neurologists delivered their verdict: He appeared to have a textbook case of frontotemporal dementia—known by the shorthand FTD&lt;p&gt;Oh man, was that a kick in the guts when I got to that bit. My Dad was diagnosed with that in the past year, (after obviously struggling for a while), and declined rapidly. He had a different variant, and indeed the one thing that DIDN&amp;#x27;T change was his personality. In fact, that&amp;#x27;s what kind of fooled me for a while. He would still trot out his usual bad jokes and regular phrases, but after a while you realize these are almost like reflexes, and often wouldn&amp;#x27;t really make sense in context.&lt;p&gt;It was interesting to see for Lee how this seemed amplified after heart surgery. My Dad had really bad &amp;quot;post-operative delirium&amp;quot; for about a month after major heart surgery, and while he recovered somewhat, that was definitely the start of his major decline.&lt;p&gt;Sadly, after moving into a care facility in mid-March, within a couple weeks he was in hospital after contracting Covid-19. He passed away on the 4th of this month from it. The only good to come out of all this was that I&amp;#x27;d visited him many times over the past couple years and said &amp;quot;goodbye&amp;quot; many times thinking it might be the last time, even if just mentally and not physically, I&amp;#x27;d get to see &amp;quot;my Dad&amp;quot;, as I knew him.&lt;p&gt;Apparently it is often a genetic disorder that can be hereditary, and you can get tested for the genetic markers. As a coder&amp;#x2F;manager myself who depends on my mind for work, and enjoys being mentally challenged and active, (and I also have young kids), something like this scares the crap out of me. I&amp;#x27;m not sure I want to know if I might have it. For one thing, being in the U.S. healthcare system, if I did have the markers, would that then count as a &amp;quot;pre-existing condition&amp;quot; I&amp;#x27;d have to disclose?</text></item></parent_chain><comment><author>wigl</author><text>I&amp;#x27;m so sorry for your loss.&lt;p&gt;Dementia and schizophrenia are present in my family as well and caring for those in the later stages has been really hard.&lt;p&gt;I found myself torn by the same question of whether to test for genetic predisposition. After reading The Gene by Siddhartha Mukherjee, whose author is in a similar position, I have found some comfort in deciding not to test for now. As he says in an NPR interview:&lt;p&gt;&amp;gt; There&amp;#x27;s no one-to-one correspondence between a genome and the chances of developing schizophrenia. And until we can create that map - and whether we can create that map ever is a question - but until I - we can create that map, I will certainly not be tested because it - that idea - I mean, that&amp;#x27;s, again, the center of the book. That confines you. It becomes predictive. You become ... a previvor (ph). A previvor is someone who&amp;#x27;s survived an illness that they haven&amp;#x27;t even had yet. You live in the shadow of an illness that you haven&amp;#x27;t had yet.&lt;p&gt;&lt;a href=&quot;https:&amp;#x2F;&amp;#x2F;www.npr.org&amp;#x2F;2017&amp;#x2F;05&amp;#x2F;12&amp;#x2F;528097708&amp;#x2F;the-power-of-genes-and-the-line-between-biology-and-destiny&quot; rel=&quot;nofollow&quot;&gt;https:&amp;#x2F;&amp;#x2F;www.npr.org&amp;#x2F;2017&amp;#x2F;05&amp;#x2F;12&amp;#x2F;528097708&amp;#x2F;the-power-of-genes-...&lt;/a&gt;</text></comment>
<story><title>What Happened to Lee</title><url>https://wired.com/story/lee-holloway-devastating-decline-brilliant-young-coder/</url></story><parent_chain><item><author>billti</author><text>&amp;gt; The neurologists delivered their verdict: He appeared to have a textbook case of frontotemporal dementia—known by the shorthand FTD&lt;p&gt;Oh man, was that a kick in the guts when I got to that bit. My Dad was diagnosed with that in the past year, (after obviously struggling for a while), and declined rapidly. He had a different variant, and indeed the one thing that DIDN&amp;#x27;T change was his personality. In fact, that&amp;#x27;s what kind of fooled me for a while. He would still trot out his usual bad jokes and regular phrases, but after a while you realize these are almost like reflexes, and often wouldn&amp;#x27;t really make sense in context.&lt;p&gt;It was interesting to see for Lee how this seemed amplified after heart surgery. My Dad had really bad &amp;quot;post-operative delirium&amp;quot; for about a month after major heart surgery, and while he recovered somewhat, that was definitely the start of his major decline.&lt;p&gt;Sadly, after moving into a care facility in mid-March, within a couple weeks he was in hospital after contracting Covid-19. He passed away on the 4th of this month from it. The only good to come out of all this was that I&amp;#x27;d visited him many times over the past couple years and said &amp;quot;goodbye&amp;quot; many times thinking it might be the last time, even if just mentally and not physically, I&amp;#x27;d get to see &amp;quot;my Dad&amp;quot;, as I knew him.&lt;p&gt;Apparently it is often a genetic disorder that can be hereditary, and you can get tested for the genetic markers. As a coder&amp;#x2F;manager myself who depends on my mind for work, and enjoys being mentally challenged and active, (and I also have young kids), something like this scares the crap out of me. I&amp;#x27;m not sure I want to know if I might have it. For one thing, being in the U.S. healthcare system, if I did have the markers, would that then count as a &amp;quot;pre-existing condition&amp;quot; I&amp;#x27;d have to disclose?</text></item></parent_chain><comment><author>Retric</author><text>FYI, preexisting conditions stopped being a major issue with heath insurance after the Affordable Care Act (Obama Care) got passed: &lt;a href=&quot;https:&amp;#x2F;&amp;#x2F;www.policygenius.com&amp;#x2F;health-insurance&amp;#x2F;pre-existing-conditions&amp;#x2F;&quot; rel=&quot;nofollow&quot;&gt;https:&amp;#x2F;&amp;#x2F;www.policygenius.com&amp;#x2F;health-insurance&amp;#x2F;pre-existing-c...&lt;/a&gt;&lt;p&gt;Insurers cannot deny health coverage,  cannot charge higher costs, or  subject people with pre-existing conditions to a waiting period&lt;p&gt;You may be better off getting life&amp;#x2F;long term care insurance before getting tested, but other than that there is little reason to avoid being tested.</text></comment>