Since my earlier post concerning naming my affliction, I have received feedback from a few sources imploring me to not stop and settle with “variant of” SBMA.\u00a0 Their point, and it is a good one, is that settling with this disease, we could be short-circuiting the system and missing out on treatments for the appropriate disease.<\/p>\n
The answer is short and simple: resources.\u00a0 I don’t have them. It would be nice to go on taking test after test until we finally get a definitive answer.\u00a0 However, here’s a bit of a statistic:\u00a0 As many as 70% of neurological disorders are undiagnosed.\u00a0 This remands the team to treating symptoms.<\/p>\n
I have trouble finding transportation to my current stream of medical appointments.\u00a0 My wife’s job is the source of my medical insurance.\u00a0 She cannot jeopardize her employment as it could prove fatal for me.\u00a0 Thus, she missing a lot of work is not an option.<\/p>\n
Then there is the financial side of it.\u00a0 My co-pays right now are in several thousands of dollars.\u00a0 The venture down the DNA test was not cheap.\u00a0 Not even with medical insurance.<\/p>\n
So, my situation is strained.\u00a0 Self-transporting is out.\u00a0 Arranging transportation for a host of doctor visits, many of which are likely to be out of town, is not an option.\u00a0 Financing the co-pays of the tests are not an option.<\/p>\n
In our discovery and research, we have found that the disease I have, while not Kennedy’s, is extremely close.\u00a0 The symptoms mimic it in every way.\u00a0 A disease that has no name, that has all the ear-marks of a known disease, that only has symptoms that can be treated.<\/p>\n
The name gives people something to hold on to.\u00a0 We know the disease is of genetic origin, as we have eliminated all other possible causes.<\/p>\n
The symptoms are all we have.\u00a0 As the mystery continues, so will my use of the phrase: “variant of SBMA.”<\/p>\n
Until God shines another pathway for me, this is my journey.<\/p>\n
In Christ,<\/p>\n
Jay C. “Jazzy_J” Theriot<\/p>\n
<\/p>\n","protected":false},"excerpt":{"rendered":"
Since my earlier post concerning naming my affliction, I have received feedback from a few sources imploring me to not stop and settle with “variant of” SBMA.\u00a0 Their point, and it is a good one, is that settling with this disease, we could be short-circuiting the system and missing out on treatments for the appropriate […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[13],"tags":[],"class_list":["post-827","post","type-post","status-publish","format-standard","hentry","category-discovery"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/827","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=827"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/827\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=827"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=827"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=827"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}