{"id":677,"date":"2018-03-26T08:49:43","date_gmt":"2018-03-26T13:49:43","guid":{"rendered":"https:\/\/journey.jayctheriot.com\/?p=677"},"modified":"2018-03-26T08:49:43","modified_gmt":"2018-03-26T13:49:43","slug":"a-little-information-on-kennedys-disease-and-my-weekend-away","status":"publish","type":"post","link":"https:\/\/jayscafe.net\/?p=677","title":{"rendered":"A Little Information on Kennedy’s Disease, and My Weekend Away"},"content":{"rendered":"

Kennedy’s Disease (KD), scientifically known as Spinal and Bulbar Muscular Atrophy, is what what I’m trying to get tested for. This article on Kennedy’s Disease<\/a> has excellent information on the disease.\u00a0 I have many of the symptoms.\u00a0 The chief disease that it is confused with is ALS (Lou Gehrig’s).\u00a0 ALS has already been ruled out in my case.<\/p>\n

I’m currently a member of a national level support group on Facebook<\/a> that has members from the National Institute of Health and personalities that are fighting for information using tradition media.<\/p>\n

Their introduction into my life has been beneficial.\u00a0 Even if I fail the DNA test for KD, I understand that I am not alone.\u00a0 I have learned that there are a number of “rare diseases” in this world that are difficult to diagnose, categorize and thus, treat.<\/p>\n

I think I a moving into a different phase of my journey.\u00a0 It appears that we have gained enough intelligence about my condition that we can do somewhat normal activity.\u00a0 However, the activity extracts a cost to me physically and medically. However, paying this cost is after we are able to do what we planned to do.\u00a0 There is no sustainability in these actions.\u00a0 When my body has enough, the crash is rapid and severe.<\/p>\n

An example of this was this weekend.\u00a0 My wife and I traveled to an incredible friend’s place.\u00a0 The drive was about 2 hours.\u00a0 To make the trip, I drugged myself up heavily.\u00a0 Friday night and Saturday morning was not real good, but I rose and in the afternoon we were able to briefly go to a festival.\u00a0 I was in the chair at the festival and for the remainder of the evening.\u00a0 We made it to three breweries and a restaurant.\u00a0 I had some rather awesome beer. Dining at Carreta’s was beyond amazing.\u00a0 We then made it back home and I, essentially, dumped myself into bed.\u00a0 I slept until 11 am the next morning.<\/p>\n

Today is Monday and I feel as though I could sleep for another day.<\/p>\n

My muscles are very rigid this morning.\u00a0 I don’t want to take any more meds as I heavily medicated myself for the entire weekend.\u00a0 However, I need my muscles to loosen, lest another spastic event begins.\u00a0 The last one lasted from Monday night last week until Friday night.\u00a0 I think the heavy medication I ingested for the trip, broke the cycle of spasms.<\/p>\n

All movements this morning are slow and deliberate.\u00a0 I feel like a “Tin Man.”\u00a0 The “Tin Man” feeling is something that I have characterized to my wife for almost a decade.\u00a0 I wake up and all my muscle feel like they need to be oiled.\u00a0 In the beginning, we assumed this was due to osteoarthritis, which I also have.\u00a0 However, the tests have shown that I don’t have osteoarthritis bad enough to cause the stiffness.\u00a0 It wasn’t until I was unable to move that a rheumatologist told me these were neurological symptoms and not arthritic symptoms that we were placed on the right tract.\u00a0 He refused treatment until I went to a neurologist.\u00a0 That really began my journey, in the early spring of last year.\u00a0 I will never go to a different neurologist.\u00a0 The man was the first person to correctly identify the manner of the disease.\u00a0 I owe him deeply.\u00a0 I have since returned to him and he is treating me for osteoarthritis and osteopenia<\/a> (precursor to osteoporosis).<\/p>\n

Osteopenia, primarily affects women.\u00a0 I must look into if there is any evidence of this being disproportionately represented in KD patients.<\/p>\n

I’m fighting the urge to say KD is it.\u00a0 I don’t want to get my hopes up that we may have found a name for this evil.\u00a0 But, man, the chips are stacking up.<\/p>\n

We should find out this week if the test has been approved.\u00a0 Then two months, we will have to wait for the results.\u00a0 It will be such a relief to give it a name.<\/p>\n

In Christ,<\/p>\n

Jay C. “Jazzy_J” Theriot<\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Kennedy’s Disease (KD), scientifically known as Spinal and Bulbar Muscular Atrophy, is what what I’m trying to get tested for. This article on Kennedy’s Disease has excellent information on the disease.\u00a0 I have many of the symptoms.\u00a0 The chief disease that it is confused with is ALS (Lou Gehrig’s).\u00a0 ALS has already been ruled out […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[43,13],"tags":[],"class_list":["post-677","post","type-post","status-publish","format-standard","hentry","category-data","category-discovery"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/677","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=677"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/677\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=677"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=677"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=677"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}