baclofen pump increases

Yesterday i went in to get my baclofen pump dose increased 10% cuz were still tryin to get my spasticity better under control, its kinda cool how they change it they just like put a programmer up against your pump and i think its like magnetic or something but they program it thru your skin, which is good cuz if they had to cut you open everytime that might be quite a hassle haha. I dont especially care for having a baclofen pump, its uncomfortable, mine was placed really low and rubs on my hip bone sometimes but i guess i need it, before i got it my tone was so bad it was sometimes impossible for my mom to bend my legs getting me in my chair. Nothing special about the dose increase tho. Im getting it refilled in january and were changing the concentration so well see if that helps. Tom and i talk about it all the time, people see someone in a wheelchair and think oh that sucks he cant walk but its so much more than that, people have NO clue. Going to the bathroom is a hassle, everything is a hassle and you constantly gotta ask for help, an inch is everything especially when you cant like really shift in your chair, if your hips are off just a little its so uncomfortable and then you gotta ASK for help, everytime i have to ask for something i wanna punch a damn hole thru something, maybe even my own face. Lil off topic but whatever maybe youll see how good you have it, you dont have to ask for help to go to the bathroom. And tonights shower night, i hate it, nothings more demeaning than being 19 and needing your mom to give you a shower, it makes me feel pathetic i hate shower night. Sorry for the rant, just venting, youll get alot of that following me cuz im no longer positive but maybe itll make you more grateful.hah i put up two beats this weekend nothin special just playin on my ipad check out my music! https://soundcloud.com/sobasedwoo/scroku peace out yall✌️!

Botox party

On thursday, i had to go in to see my physiatrist for botox injections in my left arm(well actually myobloc injections), i seem to be invincible to botox injections so i get myobloc which is just a different strain of botulinum toxin. I get them every few months cuz my brains constantly sending signals to my left arm, wrist, and hand to clench and botulinum works to block those signals in your nerves but it honestly hurts. Its not like cosmetic where they can just eyeball where to inject your face. My doc has to make sure she gets the precise muscles controlling each finger and wrist flexor, so they send an electric signal thru the needle into the muscle as they inject to make sure we get a response from the right muscle and theres also a machine connected to the needle that crackles when it picks up tone signals in your muscle so they make sure theyre injecting where the tone is strongest. The tone, also known as spasticity, keeps my bicep flexed constantly so my arms never straight my elbows always bent and it clenches my hand in a fist, i cant open it at all. So i get a couple injections in my bicep, a few in my forearm, a couple in my wrist, and a few in the top of my hand to get the muscles clenching my fist, thats really where she has to send the shock thru the needle to make sure she injects each muscle controlling each finger. So like her and the nurse might have to poke and shock a couple different places before they get a response for the finger theyre going for. So myobloc or botox isnt fun, who likes needles anyway? Its weird i never thought id be getting botox injections but then again, i never knew it was treatment for spasticity, id never even heard of spasticity and i definitely didnt expect to have a stroke. Haha peace out yall!✌️

“The Future of the Mind” by Michio Kaku

I finished a 1500 page book on Monday! Im proud! The hyperbaric oxygen treatments mustve really helped my attention span and memory cuz i could barely remember a page cuz my mind would be in a completely different place when i read, my eyes pretty much just scanned over the words and my mind wouldnt take much in, but this time i was fully engaged! Maybe due to the fascinating content but this book is so good, i definitely recommend it for anyone interested in anything. Its about the brain, neuroscience, and new technologies being developed for the brain. It covers soo much material, alot of it goes into theoretical applications for new brain technologies as they progress, its the most fascinating book ive ever read, the author is a theoretical physicist but he definitely has his bases covered in neuroscience, ALOT of work mustve went into this, but i think it was pretty easy to understand im just wondering howr the “telekinesis” technology(e.g. Via EEG or ECOG) works for stroke victims like me. Because he describes stroke survivors who are “locked in” or unable to move or speak(how i almost was before i had any speech) and i know these technologies read brainwaves to control a computer and after my stroke, i still have abnormal brainwaves, which is why im on anti epileptics. I just dont understand how that works but my favorite parts of or subjects covered in the book are:

The history of neuroscience.
Recording and implanting memories.
Prospect of downloading consciousness and essentially obtaining
Michio kaku’s space time theory of consciousness
immortality
Artificial Intelligence
What alien consciousness may be like

Thats just some i can think of off the top of my head, i would honestly say everything in this book is gold, like i said this book covers SO much material im writing this late im so stoked i was able to read this book, ive had it like all year, i just couldnt manage reading it before i went to saras garden peace out yall✌️

Burning calories

Ive come up with a really busy daily routine, just been nonstop working out all weekend besides the two hours i went to the skatepark to watch the session. In addition to my CPAP speech exercises, oral motor exercises,an hour in the standing frame, and lumosity, ive been doing 50 squats a day with my transfer pole, but it kinda feels like im putting alot of my weight on the pole its a major crutch, my back gets super sore tho and my legs feel like theyre getting stronger, i do 50 back exercises which is pretty much leaning forward over my legs in my powerchair and sitting back up without using my arms, its hard becuz my left arm just like hooks around my knee and as i try to sit up the tone in my tricep kicks in and it straightens, pulling me forward as i sit up so its kinda like resistance training, i do 50 of those and then whenever im just sitting in my chair, i workout my right shoulder and wrist, theyre the weakest parts of my arm, with a weight trying to keep my heart rate up and burn calories cuz i feel fat honestly haha so im trying to get myself breathing hard which doesnt happen much when your in a powerchair. Squats get me huffin and puffin tho. I dont want to store fat i just want lean muscle i can use, like i used to be. I feel bad my mom has to move me around and stuff, i need to go back to saras garden as strong as possible too! I dont get on my therapy mat on the weekends, i used to 7 days a week but i feel bad doin that to my mom and i read your muscle grows while your at rest, i still workout tho, its more of a break for my mom, i can go 7 days a week!haha anything to recover… Well im writing this late and i need to wake up early cuz mornings are my reading time peace out yall✌️

In Home Therapy

Started getting on my therapy mat with my mom, shes been there thru all this so shes seen it all she does good as a substitute therapist, so i got some protein, and i gotta start dieting. I need to go back to Sara’s Garden as strong as possible cuz i went way too weak and didnt have the core or back strength i need to build on and make more progress, my moms helping me with that. Since insurance doesnt cover much therapy anymore, my dad built a therapy mat for at home and my mom puts me on it and helps me workout. My mom gets me out of bed then i eat, brush my teeth, and then she hooks up electrical stimulation to my arm, which is really good cuz it pulls my wrist up and opens my fingers a little, whereas, my wrist is always bent with my hand in a fist, since i dont have a splint to keep my hand open right now, i havent been able to open my left hand since april 6th, 2012. After that i do my CPAP speech exercises and my oral motor exercises, then my mom puts me in the standing frame for an hour, after that its lunch and mom puts me on the mat for a workout where i try to do bridging, ive been sucking at that lately, roll onto my stomach and lift my head up, im not sure how many times, as many as i can til i get tired, im gonna start keepin track tho so i have numbers to aim for, then my mom helps me roll onto my back and i workout my tricep with my right arm and an 8lb weight. After that she helps me roll onto my side and push up to sitting on the mat, its important to work on sitting with my legs straight out in front of me cuz sitting on the edge of the mat or something my legs contribute most of my balance, so i sit for twenty minutes like dora told me to, then my mom scoots me to the edge of my mat and i curl the 8lb weight and finally my mom puts me in my chair and i try to workout my shoulder and do squats with my transfer pole at least. Whew its frustrating tho like when my body doesnt respond the way it should, today layin on my stomach my mom was tryin to get me to bend my knee and lift my foot but its all messed up i cant get my knee to bend without my hip flexors kicking in trying to lift my knee so it ends up digging into the mat. Then i feel guilty for making my mom work so hard, it makes me feel like a burden honestly i kinda always feel that way tho. I dont proofread these or worry much about grammar but trust me im a very good writer,haha peace out yall

Had physical therapy today!

So today i had a session of physical therapy and thats rare since insurance doesnt normally cover it anymore which is frustrating because they have like a “policy” where they give you the most therapy during the acute recovery stages after stroke(first 3 months) then after a year if your not making anymore progress they hardly cover any therapy which i find unfair because ive done some reading it takes time and damaged brain cells need to be stimulated or they die so if you dont recover in this little window of time they just cut you off and i see it as hurting us because without the stimulation neurons could die off but luckily my mom works with me more than most parents would, putting me in the standing frame, hooking up electrical stimulation everyday and everything else she does to help me improve. But anyway, therapy was good just tryin to figure out where i am since the last time she saw me and what we think is most important to work on that we can make the most progress with since insurance only approved 4 sessions which really isnt much so im gonna be tryin hard like i did today and always do but i actually impressed her today, she thought i was rolling better and just moving better she liked to hear about what i was doing at saras garden, she was impressed i could get my footplates up on my chair by myself. So we got on the mat and did some rolling back and forth onto my stomach then i had to lie on my stomach and push myself up from my elbows and i got on hands and knees and had to rock back and forth then she hauled me up and i had to balance on my knees, activating my butt muscles and kneeling tall, not easy then i had to lie back down, she scooted me over and i had to get up from my side to sitting on the edge of the mat. Well not a bad day, glad to get some therapy, even if its not enough to get me where i need to be, im still very glad and cuz she hasnt seen me in so long she noticed improvements, i even said i feel stagnant but she said otherwise, i just cant see it cuz i live it daily ha. Peace out yall

Baclofen pump increase today

Well sorry this blogs turned into me whining all the time, thats not what i wanted this to be when i started it, theres just nothing else to write about since i got home from saras garden, but today i had to go in to get my baclofen pump dose increased hoping to decrease the spasticity in my leg some more. A baclofen pump is a pump placed in the abdomen that pumps a continuous dose of baclofen thru a catheter into your spinal cord fluid to reduce severe spasticity, i was on oral baclofen and i was extremely resistant to getting the pump but the oral baclofen really wasnt doin anything for me but making me drowsy. The plus with the baclofen pump opposed to oral baclofen is it doesnt make you drowsy becuz it never goes to your brain and with the pump your getting a MUCH smaller dose, its measured in micrograms daily, a doctor finally convinced me by saying i might be able to walk with it and that was like the deciding factor, i kinda think he shouldnt have told me that cuz he knew thats exactly what i wanted most. Obviously im not walking so i think that was a stretch although it could help alot if my dose was perfect, but its not so thats why im going in to get it right, my left leg still locks up straight out during some transfers, so i went in for that today then i did my whole routine of speech exercises, standing etc.. Then i did some standing and squats with my transfer pole i stood up ten times and everytime i did id try doing ten squats but i only got to about 8 in one stand haha peace out yall✌️

Halloween Against Humanity, meet Bradlee

Didnt get outta bed til noon, pissin me off. Haha i hate how i have to wait on people to wait on me, ive never been the type to just lay in bed for a couple hours before i wake up. I get it tho my mom slept in cuz i got home late since i went to my friends halloween party, it just sucks so much not doin things my way or on my schedule, alot of stuff just doesnt get done cuz i wont ask, i already feel like enough of a burden and asking for stuff makes it worse, and i figure if your highest highs really match your deepest lows, i may as well max out the suffering now. Ha yesterday on halloween, i visited a friend in the hospital, then at night i went to my other friends party in my costume, meet bradlee guys. Haha i went in white face,the makeup i got sucked tho, ill do better next year, my mom took my contacts out and i wore my glasses(which gave me a raging headache) just cuz its funny and i dont understand why people get so offended at black face, im black and i dont think its some abhorration.😂anyway it wasnt a very big party but it was fun cuz we played this game cards against humanity, its like dirty apples to apples its hilarious! I wanna play again, i guess next time she has a party cuz im never with that many people, its like impossible for me to find one person to hangout with. Today ive done all the exercises ive been doing and im about to get in the standing frame when my parents get back from the store, hopefully ill make it to the mall today peace out yall✌️