Bottom line up front:\u00a0 I think we are not where we want to be, but we are where we are going to be.<\/p>\n
Summary:\u00a0 The current medical situation and challenges of my enigmatic condition.\u00a0 What we know, what we don’t know and what we would like to know.\u00a0 My abilities and status change daily and can be very volatile, changing from walking without a cane to being carried to a wheelchair, sometimes within minutes.<\/p>\n
Pain:\u00a0 I would like to declare that pain has been brought under control.\u00a0 This, in large, is due to our discovery of a mix of medications that I can take which holds the progression of symptoms of increased rigidity at bay.\u00a0 The cocktail helps prevent the muscles from injuring themselves.\u00a0 The progression of spasticity is not stopped, and continues to last between 36 and 96 hours. However, the effects are lessened.\u00a0 For this, I am very grateful.\u00a0 Prior to the introduction of the cocktail, the symptoms were extreme.\u00a0 I would be at level 9+ pain, with spasms violent enough to pull entire muscle groups for a number of days.\u00a0 With the cocktail, I feel like my body wants to spasm, but can’t.\u00a0 It is a very strange sensation and I don’t have a better description for it.<\/p>\n
Spasms:\u00a0 These continue.\u00a0 Occasionally, I will have a full-body spasm.\u00a0 However, with the increased muscle healing time, I can now feel that my body seems to have a consistent series of minor spasms.\u00a0 When I sit still, I can feel them.\u00a0 When I am typing at the computer, watching TV, sitting in a pew, or just laying down, trying to sleep.\u00a0 My muscles are consistently firing off.\u00a0 They generally progress to an internal tremble, then twitching, then full spasms, cramps and contortions of the muscles.\u00a0 I thought, for a while, that my eye was twitching.\u00a0 After paying a closer attention to my body, I realized that my lower neck muscles were firing off and my whole head was twitching, ever so slightly.<\/p>\n
Muscle Strength and Coordination:\u00a0 This varies wildly.\u00a0 When I am slightly rigid, I have control.\u00a0 When I’m excessively rigid or when I am soft, I have almost no control.\u00a0 When things are ramping up, I hurry and do things I’ve been wanting to do.\u00a0 If things progress normally, I usually have between 45 minutes to two hours of increased coordination and strength before things degrade rapidly with severe consequences.\u00a0 When I take this approach, I usually end up in a wheelchair for two or three days.\u00a0 However, I take respite in the fact that I got something done that I’ve been meaning to do.<\/p>\n
Medications:\u00a0 I’m taking in excess of 20 pills a day.\u00a0 This is in addition to supplements, my Intrathecal Baclofen and doesn’t include the medications in my emergency cocktail.\u00a0 The balance was hard to achieve and not one I care to upset.\u00a0 I appreciate all the well-wishes and suggestions about CBD therapy and potential qualifications for medical cannabis.\u00a0 However, pain is no longer the major issue.\u00a0 Stabilizing the neural activity in my spinal column is the focus along with fine tuning the efficacy of the current medications.\u00a0 Self-medication with non-prescription medications is not something I can do at the moment.\u00a0 I occasionally loose my cognitive abilities and have to discuss decisions with my wife, before taking actions.\u00a0 Whatever I put in my body, I want a doctor behind it that I am paying for, so that I have a legal recourse should things turn bad.\u00a0 The medications I take can stop, and have stopped me from breathing.\u00a0 Critical Care is not a nice place to spend a week of your time.\u00a0 The nurses are nice, after they realize you are spasming and not fighting the restraints.<\/p>\n
Charting:\u00a0 I have begun charting my vitals and other self-assessments no less than three times a day.\u00a0 The general frequency is morning, noon and evening along with any other significant event during the day. I have designed a web-accessible chart behind strong security precautions, limiting access to me alone.\u00a0 Hopefully, this will provide us a bulk of useful information to decide where we go from here. My blood pressure and heart rate is high. This is concerning. My cognitive and memory skills are not stable.\u00a0 I have a paper notebook that I write everything in.\u00a0 I still forget things.<\/p>\n
Abilities:\u00a0 Walking is of limited distance.\u00a0 However, there are times when I can walk around the block with a cane.\u00a0 Standing still is a disaster and will cause my legs to cramp or spasm within minutes. Driving is limited to trips lasting less than fifteen minutes.\u00a0 After a short time in a vehicle, my neurons start firing and bad things happen quickly.\u00a0 I only drive on single-destination trips within a few miles of my home and only when I have someone available to come and pick me up in the case that my legs give out.\u00a0 I can type a bit.\u00a0 This, in part is because I have made a very ergonomic existence in front of my computer. I have a curved keyboard at a slant and my elbows rest on the arms of an executive captain’s chair.\u00a0 However, when things start spasming, or when my osteoarthritis kicks up, then I can no longer type.<\/p>\n
Diagnosis:\u00a0 Issues related to idiopathic extreme spasticity, potentially of genetic origin.<\/p>\n
Questions we want to know:<\/p>\n
This is where we are.\u00a0 I’ve tried to be thorough.\u00a0 I think we have.\u00a0 My spirits are high and I have nearly completely accepted my position in life.\u00a0 I am glad that I purchased a server so that I can work on Internet communications when I can.\u00a0 I’m building out JayCTheriot.Com Enterprises to be quite robust.\u00a0 The system is already considerably more dependable than I am.<\/p>\n
I do long to travel.\u00a0 However, the amount of pain and necessary rehabilitation caused by the vibration of vehicles is prohibitive.<\/p>\n
It is into the future, that we go, with God’s grace.<\/p>\n
In Christ,<\/p>\n
Jay C. “Jazzy_J” Theriot<\/p>\n","protected":false},"excerpt":{"rendered":"
Bottom line up front:\u00a0 I think we are not where we want to be, but we are where we are going to be. Summary:\u00a0 The current medical situation and challenges of my enigmatic condition.\u00a0 What we know, what we don’t know and what we would like to know.\u00a0 My abilities and status change daily and […]<\/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-449","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/449","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=449"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/449\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=449"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=449"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=449"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}