{"id":698,"date":"2018-04-03T14:04:53","date_gmt":"2018-04-03T19:04:53","guid":{"rendered":"https:\/\/journey.jayctheriot.com\/?p=698"},"modified":"2018-04-03T14:04:53","modified_gmt":"2018-04-03T19:04:53","slug":"sbma-dna-test-taken","status":"publish","type":"post","link":"https:\/\/jayscafe.net\/?p=698","title":{"rendered":"SBMA DNA Test Taken!"},"content":{"rendered":"

Yesterday, I received authorization from my insurance company to take the DNA test for Kennedy’s Disease (SBMA – Spinal and Bulbar Muscular Atrophy<\/a>).<\/p>\n

I have many of the list of symptoms. \u00a0Talking privately (and publicly sometimes) to members of KDA (Kennedy’s Disease Association), it seems the matches are uncanny. \u00a0Many of the group are more mobile than I am. \u00a0It would figure, as a mathematician, that the odds are stacked in my favor (a little joking required.)<\/p>\n

There are good and bad outcomes of either answer.<\/p>\n

“No” means we move on into the future. \u00a0Continuing to walk blindly. \u00a0We are currently treating symptoms for something which we don’t know the origin. We are “shooting in the dark.” \u00a0Currently, when things get going bad, my only recourse is massive sedation. \u00a0If you look at the litany of famous people that have tried this method, you can see their expiration dates on their headstones. \u00a0Continued sedation does not work. \u00a0It has fatal consequences.<\/p>\n

My latest was last night. \u00a0I have been on an elevated state of spasticity for about three weeks now. \u00a0It ended Monday, I didn’t realize it and continued my normal amount of medications. \u00a0I woke up at 10:30 last night with blood pressure or 100\/60 and pulse of 50. \u00a0I searched for things to do to keep me awake. \u00a0I found some inappropriate music from the 80s, slipped on my headphones and rocked out until my BP resurfaced.<\/p>\n

There are perils every day in the life I live. \u00a0Real perils. \u00a0I have accepted death as an unintended consequence of my treatment plan. \u00a0It definitely is not what I want or desire in any way, shape or form. \u00a0But, when you are at pain level 8 or greater 24\/7 for more than a week and your only answer is sedation, you play a deadly game.<\/p>\n

“Yes” has many implications.<\/p>\n

    \n
  1. The most obvious is that we have a name. \u00a0I can tell people I’m not any crazier than what thy previously thought I was. \u00a0In fact, maybe just a tad less.<\/li>\n
  2. We have a growing body of information to base decisions on for treatment plans. \u00a0KD doesn’t have a huge library of information behind it, but studies have been done on the disease. \u00a0There is a possible effective treatment path for the disease. \u00a0Study identifies potential drug for treatment of debilitating inherited neurological disease<\/a>. \u00a0However, it is marginaly effective in adult males. \u00a0However, given to children prior to puberty, it seems, will stop the progression of the disease. However, the therapy is to block testosterone.<\/li>\n
  3. My progeny will have a method of identifying if they will develop the disease. \u00a0I have three daughters, two beyond puberty, one in puberty. \u00a0The two older children are pass the age of danger. \u00a0The third may not. Females only develop prior to puberty. \u00a0Males, later on in life.<\/li>\n
  4. My grandchildren will need to be tested. I have one now. \u00a0I don’t get to see her due to discord in the family. \u00a0She will need to be tested and possibly start treatment. \u00a0Male children have a 50\/50 chance of developing the disease. \u00a0They will need to be tested.<\/li>\n
  5. I have a ton of nephews and one neice. \u00a0Being unsure if this mutation started with me or my mother, either my mother, my nephews or all of them will need to be tested, for their own good. \u00a0My mother is way past the danger zone. \u00a0However, testing her would give us important medical data.<\/li>\n<\/ol>\n

    I don’t know what tomorrow brings. \u00a0Heck, in a previous post, I said I live moment to moment. \u00a0That is definitely the truth. \u00a0Yesterday morning I was weeks away from getting the DNA test. \u00a0Due to an aggressive form of Neurologist (I love my doctor), less than 24 hours later, I have the test taken. \u00a0It will be some time before I get the results. \u00a0However, I await them with great anticipation.<\/p>\n

    In Christ,<\/p>\n

    Jay C. “Jazzy_J” Theriot<\/p>\n","protected":false},"excerpt":{"rendered":"

    Yesterday, I received authorization from my insurance company to take the DNA test for Kennedy’s Disease (SBMA – Spinal and Bulbar Muscular Atrophy). I have many of the list of symptoms. \u00a0Talking privately (and publicly sometimes) to members of KDA (Kennedy’s Disease Association), it seems the matches are uncanny. \u00a0Many of the group are more […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-698","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/698","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=698"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/698\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=698"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=698"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=698"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}