Phases of SBMA, or two of the many faces of the accursed disease.<\/p>\n
In my implementation of SBMA, the disease effaces in two or three distinct phases.<\/p>\n
I have arranged them in the order of their impact.<\/p>\n
Baseline characteristics:<\/strong><\/p>\n This is what my family and friends live with everyday.\u00a0 It is very limiting and unpredictable.\u00a0 We literally have to relearn the limits of my capabilities anew every day.\u00a0 Sometimes my baseline means I have to stay in a wheelchair all day long.\u00a0 Others mean I’ll still be walking with minimal assistance until 6:30 or 7 pm that evening (those days are very few and far in between.)\u00a0 The impact on my family and friends are very confusing.\u00a0 There is no stability or plateau to what I may be able to accomplish that day and it can change on a cat’s breath.<\/p>\n I can and have gone from walking unaided to writhing in pain in a wheelchair within 15 minutes without prior warning.\u00a0 Other times, my dogs will signal to me ahead of time that something is going to happen.\u00a0 I have learned to watch them and take appropriate actions.\u00a0 They have amazing accuracy.\u00a0 Their warning may mean I have anywhere from a few minutes to an hour before symptoms set in.\u00a0 I have a theory that they can detect pheromones and\/or minor tremors that I don’t notice.\u00a0 I have noticed that when I take action and cuddle them on the sofa, I can feel the tremors.\u00a0 It is very bizarre.<\/p>\n Acute – triggered:<\/strong><\/p>\n There are activities that will trigger an acute spasmodic event.\u00a0 I originally classified only two phases: Baseline and Acute.\u00a0 However, as we are slowly getting the disease under some resemblance of control, I have come to notice that there are two types of acute: one I trigger with activity and the other that naturally occurs.\u00a0 The correct determination of the type affects how we treat these two different phases.\u00a0 Triggered generally has a short duration of 8-10 hours.\u00a0 Where the naturally occurring acute phase has no identifiable trigger and will last days, or in some cases, weeks.<\/p>\n We are still working on the correct identification of the triggers.\u00a0 We know that sustained activity on a good day will trigger an event\u00a0 in the evening when my body is fatigued.\u00a0 This will pass naturally when my body has recouped its strength.<\/p>\n The characteristics of an acute phase with a trigger are:<\/p>\n Acute – naturally occurring<\/strong>:<\/p>\n These symptoms occur when they wish.\u00a0 There is no apparent trigger other than the normal progression of the disease.\u00a0 My recent record of being in this phase is about 96 hours.\u00a0 My caregivers’, as well as my resilience is tested. All the “acute – triggered” symptoms occur, however, their duration is unpredictable and rest and medication has little effect in ending the phase.\u00a0 I would like to say that this phase is frustrating.\u00a0 However, like Maslow’s pyramid, the physical and mental needs become very foundational.\u00a0 I don’t care about ability, nor disability.\u00a0 I just desire the phase to end.\u00a0 Medication, even my cocktail, has little effect other than to lighten the veracity of the symptoms.\u00a0 I give a load of thanks to the medication.\u00a0 After about the third day, my mind is weary and I can barely think straight any longer.\u00a0 You wish and pray for the end of the phase to come.<\/p>\n There is little ability during this phase.\u00a0 Even feeding myself or performing mundane activities require a terrific amount of effort.\u00a0 This is the heart of the disease.<\/strong>\u00a0 The acute – no trigger phase is something that I could never wish upon anyone, even my greatest enemies (not that I have any – I don’t have the strength or dedication to hate someone.)<\/p>\n I stay secluded during this phase.\u00a0 Without medication, the contortions of my muscles cause a variety of issues.\u00a0 None of them good.\u00a0 I was in an extended phase when I had to leave work.\u00a0 I was under fairy intense sedation for four days.\u00a0 In all, I was in this phase from December 2016 until about March 2017 when my neurologist realized what was happening and began prescribing a chemical regimen that lowered my baseline to a respectable level.\u00a0 I frequently was at pain level 10+ during this phase.\u00a0 I don’t ever wish to return this level.\u00a0 It is terrifying.<\/p>\n With proper medication, the veracity of the symptoms are lowered, but not stopped.\u00a0 They continue until they run their course.\u00a0 Duration and intensity are unpredictable.\u00a0 I wear pads during this phase.\u00a0 Disgusting things happen to my body.<\/p>\n Returning back to baseline – continuing sensory issues:<\/strong><\/p>\n Everything we have discussed until this point has dealt with the actions of skeletal nerves.\u00a0 However, the sensory nerves are also affected by this disease.\u00a0 That is for another article.\u00a0 My family, friends and I have decided that my sensory issues, although disturbing, are quite the manna to make jokes out of.\u00a0 My body senses are very bizarre.\u00a0 We’ll discuss that in the future.<\/p>\n Thanks for reading.<\/p>\n In Christ, <\/p>\n","protected":false},"excerpt":{"rendered":" Phases of SBMA, or two of the many faces of the accursed disease. In my implementation of SBMA, the disease effaces in two or three distinct phases. Baseline – everyday Acute – triggered Acute – non-triggered. I have arranged them in the order of their impact. Baseline characteristics: This is what my family and friends […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6,8,9,43,17],"tags":[],"class_list":["post-825","post","type-post","status-publish","format-standard","hentry","category-acute-event","category-baseline","category-condition-summary","category-data","category-identification"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/825","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=825"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/825\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=825"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=825"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=825"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\n
\nJay C. “Jazzy_J” Theriot<\/p>\n