#KennedysDisease<\/p>\n
My wife and I declared war on this disease, months ago. \u00a0I think we may be making progress and experiencing the fruits of our labor!<\/p>\n
Our list of weapons is growing. \u00a0Among them: \u00a0Lortab, Zanaflex, Baclofen, rest, A\/C, hot salt baths, numerous topical ointments, Pro-Air inhaler, wheelchair, Rolator walker, canes, ice-packs, heating pads, BCAA, protein drinks and a wonderful Tequila drink we affectionately call the Bobaritta. \u00a0These are all in addition to my normal routine and ingestation of more than 20 pills I take on a normal day.\u00a0Each has \u00a0a specific time, place, symptom to combat and method of implementation.<\/p>\n
What we are noticing is that we are having an affect on the change of the nature of the attacks. \u00a0Prior to warfare, we noticed that I would stay in spasm, a “spasmodic” event to coin a term, from 36 to 96 hours. \u00a0They were agregious and would destroy my muscles. \u00a0It was my theory that if we could lessen the veracity of these events and encourage my muscles to heal prior to the next attack, then we could improve the quality of my life.<\/p>\n
I think we are witnessing the fruits of our labor.<\/p>\n
I just went through a few weeks of good and bad. \u00a0I observed that I would have 4-hour spasmodic events , followed by 4-hours of deep sleep, approximately 18 hours appart. \u00a0This would last for about a week. \u00a0It befuddled me because I initially thought that we were only causing the spasmodic events to grow in frequency, but decrease in veracity. \u00a0Then, I realized that the whole mess lasted about 96 hours. \u00a0Taken in toto, the sequential events constituted one 96-hour spasmodic event.<\/p>\n
On the ramping-up of the event, I would begin my warfar, taking the Zanaflex, then an hour, then Lortab, coupled with rest and A\/C. \u00a0Movement would be reduced to using a wheelchair for safety and to prevent excitation of the skeletal muscles. A BCAA drink, the mixture purchased from GNC, would be consumed in the third hour. Heating pads and\/or cold-packs are employed depending the the muscles reaction to them. If possible, a 20-minute soak in an essential-oil & epson salt hot bath was done. \u00a0This can not always occur due to mobility and\/or the availability of a watcher. \u00a0The final\u00a0pi\u00e8ce de r\u00e9sistance is Tequila. \u00a0I quickly ingested 80-proof drink will kill the spasms. \u00a0Unfortunately, this could also kill me.<\/span><\/p>\n After the event terminates, intense fatigue takes over and I sleep for several hours. \u00a0Sometimes, days.<\/p>\n Protein drinks, targeting powerlifters, from GNC are drank daily. This is to give the muscles what they need to repair quickly. \u00a0Oral Baclofen is taken every four hours on a regular basis. \u00a0\u00a0The modification of the Baclofen schedule was a big step. Small doses taken every four hours maintains a trickle of Baclofen in my system around the clock. \u00a0I have an alarm set at 1 and 5 am during the night to help me take them. \u00a0This mimics the trickle of Intrathecal Baclofen my pump delivers to my spine.<\/p>\n With this rigid schedule of medication, we have been able to attend an evening play at the local playhouse and, two days later, an orchestral performance. \u00a0Both events were attended in wheelchair to provide me with a comfortable seating. \u00a0I had to medicate pre- and per-events to address the normal seizing of the muscles which comes from continued static positioning. \u00a0Staying still has never been one of my strong points. \u00a0Now, I know why — my muscles would frequently cramp, and I would move to relieve the pain. The muscle spasms, on some level, has been with me my entire life. \u00a0I just didn’t recognize it as such.<\/p>\n There is much more I could write, but the purpose of this article is to show the progress we have made in combatting the acute phase of this disease. \u00a0My theory is that we have effective treatment for the chronic phase of the disease, but it is incumbant upon my wife and I to figure out the acute. \u00a0Without staying under video surveilance for a week and grabbing an event in it’s entirety, our best bet is in relating our information to our team of doctors.<\/p>\n To God be the Glory,<\/p>\n Jay C. “Jazzy_J” Theriot<\/p>\n Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc:\/\/irc.freenode.net\/ExtremeSpasticity<\/a>\u00a0 You will need an IRC Client such as HexChat<\/a> to connect.<\/p>\n","protected":false},"excerpt":{"rendered":" #KennedysDisease My wife and I declared war on this disease, months ago. \u00a0I think we may be making progress and experiencing the fruits of our labor! Our list of weapons is growing. \u00a0Among them: \u00a0Lortab, Zanaflex, Baclofen, rest, A\/C, hot salt baths, numerous topical ointments, Pro-Air inhaler, wheelchair, Rolator walker, canes, ice-packs, heating pads, BCAA, […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[28,34],"tags":[],"class_list":["post-879","post","type-post","status-publish","format-standard","hentry","category-recovery-discovery","category-treatment-plan"],"_links":{"self":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/879","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=879"}],"version-history":[{"count":0,"href":"https:\/\/jayscafe.net\/index.php?rest_route=\/wp\/v2\/posts\/879\/revisions"}],"wp:attachment":[{"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=879"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=879"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/jayscafe.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=879"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}