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cypher

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About cypher

  • Rank
    New Member
  • Birthday 12/14/1954

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  • Stroke Network Email
    Yes

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  • Stroke Anniversary (first stroke)
    10-02-2016
  • How did you find us?
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  • First Name
    melanie
  • State
    mn
  • Country
    United States

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144 profile views
  1. *Sighs* I am not seeking anyone's or any efforts to throw me-a life line; I am looking for the raw material, or reason with which to create my own "life line". Since 2016, I have slowly gone through every effort to seek enough information & facts in regard to my current medical condition. Leave no stone, unturned as many of the facts that I have managed to garner leave little to no reason to think that I may get better or recover in reference to the current state of anything that research, pharmaceuticals, or technology is able to currently offer someone with my boo-boos' ;} But in even knowing the facts, I still continue on to try anything & everything-if I use my own anger as my energy to not accept my fate, so be it. Everyone needs & works off of different emotions at different times in one's life. Nor, do I think that there should be, to edit oneself in terms of his/her own feelings in a place where there should be the freedom to vent, in a place where a person's opinion who has never sustained a stroke should be even brought forth in so far as any kind of directive for those who have endured a real stroke. Please understand if I do not feel comfortable in further sharing my feelings on this site. Another caregiver did share his feelings about what his wife was going through...it touched my heart deeply. This individual did not take it upon himself to counsel me, in terms of what I should do or how I should feel,ect. Someone once said, The road to hell is paved with good intentions" so although I recognize the well-meaning & thoughtfulness behind everyone who took their good time to comment, please extend me the same courtesy & don't place a warning on anyone who still has the energy & nerve to share their "dark" side. I spend my most of my time putting-on- a positive front & keeping-a stiff-upper-lip about my condition, seems I will have to do the same on this site & write nothing if it isn't, "happy-happy, joy-joy". I have a problem with that.
  2. Brightest blessings, prayers, & my thoughts go out to you & your wife for a healthier & happy 2018 PS: I call my bum hand, "The Claw" as well;}
  3. Yes Alan, I am surviving in a very Dark Pace at this point in response to the facts which have been related to me in regard to my own prognosis. I'm glad you've found your rock but my own rock has gotta be found, from within myself. As I do not think that there is a need to edit to edit oneself in terms of his/her own feelings in a place where there should be the freedom to vent, in a place where a person's opinion who has never sustained a stroke should be even brought forth in so far as any kind of directive for those who have endured a real stroke, please understand if I do not feel comfortable in further sharing my feelings on this site. Thank you for sharing.
  4. I'm with you on this Deigh-! Pour me-another...please?
  5. Until I find a realistic answer, I sip brandy all day...Although it doesn't rid one of pain; it sure helps making one feel better about having to live in it. Cannabis was effective but sadly,I developed a horrific allergy to smoking weed so unless I can procure it in an ingest able form-that's out. Besides waiting for the experts, believe it or not-I've heard that a concentrated extract of wild lettuce has been used for centuries for the treatment of chronic pain! Haven't tried it myself so I can't testify to the effectiveness of this claim-but you can bet that I will;}
  6. I hear you Ken, I've had mounting pain every day beginning 4 months post-stroke, the local doctors knew nothing about post-stroke pain so until I find a cure; I just drink my brandy all day & hope for the best. Too bad alcohol is a depressant as I need to be more depressed like a fish needs a bicycle;} Oh well, hopefully the experts can suggest a type of medication that will stop these phantom pains[quite vicious & upsetting] & that the experts will be able to set me with the correct body braces so that I can functionally walk & draw without paying in hours of exquisite agony & dark blue/purple skin discolorations that my old harness leaves me with.
  7. HI STOCKFLYER- WOW! I USED TO DANCE & HAVE THAT MUSIC HAS SOME MIRACULOUS POWER TO ALLOW MY BODY TO FEEL THE URGE TO ATTEMPT THE MOVEMENTS TO A PARTICULAR TUNE THAT I USED TO DANCE TO-PRE-STROKE. UNFORTUNATELY WHILE THIS MOVEMENT ATTEMPTS THE STEPS THAT I USED TO USE, THE JOY OF EXPRESSION THAT I HAD USED TO FEEL IS RUDELY CUT-SHORT BY MY BODY'S INABILITY TO COMPLETE THE MOVEMENT THAT I HAD PERFECTED OVER YEARS OF PRACTICE. SO, FOR ME-THIS HAS BECOME YET ANOTHER SOURCE OF FRUSTRATION[ANGER] IN THAT THE MOVEMENT SHOULD BE SO NATURAL, EFFORTLESS NOW FEELS & RESEMBLES SOMETHING AKIN TO TRYING TO PLAY WITH A BELOVED TOY[?] THAT IS NOW HOPELESSLY BROKEN...SOUNDS DEPRESSING & IT IS, UNFORTUNATELY EVEN THOUGH I KNOW IT WON'T FUNCTION, EVERY TIME I HEAR, CERTAIN MUSIC I STILL FIND MY BODY UNABLE TO REFRAIN FROM REPEATING THE SAME RESPONSE WITH THE SAME PREDICTABLE CONCLUSION. GO FIGURE...
  8. HI KELLI [PS: I LOOKED-UP YOUR LINK, Stroke Strikes Fast: How to Respond The National Stroke Association wants you to know the symptoms of a stroke so you can act fast and possibly save your own or a loved one’s life. The F.A.S.T. method for recognizing and responding to stroke symptoms: F = FACE Ask the person to smile. Does one side of the face droop? A = ARMS Ask the person to raise both arms. Does one arm drift downward? S = SPEECH Ask the person to repeat a simple sentence. Does the speech sound slurred or strange? T = TIME If you observe any of these signs, it’s time to call 9-1-1 or get to the nearest stroke center or hospital (National Stroke Association, 2009).FROM MY OWN STROKE EXPERIENCE-NOTHING WENT THAT WAY AT ALL. MY STROKE WAS DIAGNOSED AS A LACUNAR STROKE[INFARCTION] BUT AGAIN EVEN THE GIVEN DEFINITIONS OF THAT PARTICULAR BRAIN EVENT DO NOT EXACTLY CORRESPOND TO WHAT I HAD EXPERIENCED. PERSONALLY, HAVING HAD TO CARE & SEEK ANSWERS FOR A CHILD WHO WAS AFFLICTED WITH TRAUMATIC BRAIN INJURY [TBI] THAT SHE SUSTAINED DUE TO AN AUTOMOBILE ACCIDENT THAT OCCURRED WHEN SHE WAS 4 YRS OLD, IT IS MY DEEPLY HELD OPINION THAT THE MEDICAL COMMUNITY KNOWS "JACK-*beep*" ABOUT THE MOST IMPORTANT & COMPLEX ORGAN IN THE HUMAN BODY. AS MY DAUGHTER'S ACCIDENT OCCURRED IN THE EARLY 1990'S, HER BACK WAS BROKEN & THANKFULLY THAT WAS ABLE TO BE FIXED BUT HER BRAIN SUSTAINED INJURY-AND THE TECHNOLOGY OF THAT TIME COULD EVEN DIAGNOSE THAT INJURY UNTIL THE EARLY PART OF 2000 & SOMETHING. SO MUCH DAMAGE BY WELL MEANING PROFESSIONALS WHO WERE LITERALLY GUESSING AT WHAT HER SYMPTOMS MEANT & PRESCRIBING HEAVY DUTY MEDICATIONS BASED UPON THESE "GUESSES". TRAGIC. OH WELL, UNTIL SUFFICIENT FUNDS ARE PUT INTO THE RESEARCH INTO THE HUMAN BRAIN AS HAVE BEEN PUT INTO THE HUMAN BREAST OR AIDS[HIV], ONE CANNOT REALLY HOPE FOR ANY KIND OF EFFECTIVE TREATMENT. I'LL EVEN BET THAT THOSE WHO ARE INVOLVED IN THE CREATION OF ARTIFICIAL INTELLIGENCE [ AI ] HAVE A BETTER UNDERSTANDING OF HOW THE HUMAN BRAIN FUNCTIONS THAN THE MEDICAL PROFESSIONALS. THAT'S JUST SAD.
  9. YES BANJO-YOU ARE SPOT-ON IN THAT STATEMENT! I'VE ALREADY SEEN SUCH INDIVIDUALS & I COULD SERIOUSLY START CRYING JUST CONTEMPLATING THEIR PLIGHT...I AM GRATEFUL THAT I STILL HAVE THE TIME & MENTAL CAPACITY TO MAKE PLANS FOR THE EVENT THAT SHOULD I STROKE-OUT AGAIN TO FIND MYSELF IN A "LOCKED-IN-SYNDROME" TYPE OF STATE OF EXISTENCE; THERE IS A PLAN IN PLACE TO PREVENT YEARS OF SUFFERING IN THAT HORRIFIC , HUMILIATING KIND OF SURVIVAL.
  10. WELL DEIGH, YOU WERE FORTUNATE TO BE-"OUT-OF-IT" AS QUICKLY AS YOU WERE. IN MY OWN CASE, I NEVER HAD A CLUE THAT I WAS "IN-IT" SO AS TO BE "OUT-OF-IT" IN ANY TYPE OF WAY THAT MADE SENSE. MY KIND OF STROKE WAS LATER DIAGNOSED AS A "LACUNAR STROKE". THE ONSET OF THE LOSS OF ALL MUSCLE CONTROL ON THE LEFT SIDE OF MY BODY TOOK PLACE OVER A 3 DAY TIME SPAN & DID NOT AFFECT ANY MUSCLES[FACIAL,ECT] FROM THE NECK-UP. NOR WAS THERE EVER ANY HEADACHES OR LOSS OF COGNITIVE ABILITIES DURING THIS TIME PERIOD THAT ONE READS ABOUT SO OFTEN, IN ESSENCE THERE WAS NO WAY TO KNOW WHAT THE HELL WAS HAPPENING BESIDES A GENERALIZED SORT OF BODY WEAKNESS THAT ONE MIGHT AT THE ONSET OF A FLU...THE ONLY TIME THAT REAL PANIC SET-IN WAS WHEN I LOST ALL ABILITY TO EVEN MOVE MY LEFT ARM NOTED THAT THE SAME THING SEEMED TO BE HAPPENING TO MY LEFT LEG. THERE WAS NOTHING-SUDDEN ABOUT THIS LOSS OF MUSCLE CONTROL. AS I'D BEEN MISDIAGNOSED WITH MS SOME YEARS PRIOR TO THIS OCCURRENCE, I THOUGHT THAT I WAS EXPERIENCING SOME FLARE-UP OF ONE OF THE LESIONS ON MY BRAIN & THAT AFTER THIS SWELLING DISSIPATED, I WOULD REGAIN THE MAJORITY OF THE MUSCLE FUNCTION THAT I WAS GRADUALLY LOSING. THIS THOUGHT WAS FAR FROM THE REALITY OF THE REALITY OF THE ACTUAL SITUATION. SO AS MUCH AS I THANK YOU FOR YOUR THOUGHTFUL RESPONSE; PLEASE DON'T EXPECT "CHEERFUL" POSTS FROM ME IN THE FORESEEABLE FUTURE...NOTHING PERSONAL BUT ITS NOT GONNA HAPPEN:}
  11. THANK YOU FOR YOUR RESPONSE KELLY & JUST TO KNOW THAT OTHERS HAVE SUFFERED & STILL ARE SUFFERING THRU THE LOSSES THAT I'M EXPERIENCING GIVES ME-CONSOLATION & STRENGTH. NO, I CAN'T WORK THRU MY ISSUES, ALONE & SPEND MUCH TIME EITHER ANGRY, FRUSTRATED, OR IN TEARS, HEART-BROKEN FOR THE GOALS, DREAMS, & AMBITIONS THAT THIS STROKE HAS WIPED-AWAY FROM ME. THIS WASN'T EVER SUPPOSED TO HAPPEN & I HAD ABSOLUTELY NO WARNING OR PLAN OF ACTION IN THE EVENT THAT SOMETHING LIKE "THIS" COULD EVER HAPPEN TO ME. I HAD BEEN-SUPER-FIT & HAD WORKED HARD TO KEEP MYSELF, PRODUCTIVE & LOOKING GOOD FOR MY AGE. IN MY CASE, I HAD BEEN MISDIAGNOSED WITH MS [MULTIPLE SCLEROSIS], IN 2002 & HAD BEEN TAKING DAILY INJECTIONS TO ADDRESS THAT CONDITION AS NEW TREATMENTS EMERGED. WELL, AFTER SOME RECENT TESTING, MUCH TO MY HORROR I FOUND OUT THAT I'D NEVER HAD MS! WHAT I'D BEEN EXPERIENCING AS WELL AS WELL AS THE LESIONS ON MY BRAIN WERE ACTUALLY THE RESULT OF A MULTITUDE OF "MINI-STROKES" NOT-MS... IN SHORT, I WAS BEING TREATED FOR A BROKEN ARM WHEN IN REALITY-I HAD A BROKEN LEG, HAD I RECEIVED THE CORRECT INFORMATION-ALL THE HELL OF SUSTAINING A MAJOR STROKE COULD HAVE EASILY BEEN AVOIDED...NO WORDS CAN EXPRESS THE FEELINGS I HARBOR FOR THAT KIND OF ERROR. WHAT DOES ONE SAY?
  12. HI BECKY & THANK YOU FOR YOUR RESPONSE;} I RELATE TO YOUR QUIP THAT THE BRAIN HAS ITS OWN TIMETABLE BUT I HAVE ALWAYS THOUGHT OF IT , EVEN PRE-STROKE, AS MY BRAIN HAVING A MIND OF ITS OWN... IT WAS FUNNY AT ONE TIME, NOW-NOT SO MUCH. AT THE TIME OF MY STROKE, I WENT INTO TOTAL DENIAL THAT "THIS" WAS ACTUALLY HAPPENING-FOREVER-TO MY BODY. SO MUCH SO THAT I WOULD ACTUALLY HOIST MYSELF-UPRIGHT, TO MOVE OR GRAB FOR SOMETHING THAT I WANTED, ONLY TO FALL-FLAT ON MY BACK TO BE UTTER ABLY STUCK ON MY BACK LIKE AN UPENDED TURTLE, UNABLE TO RIGHT ITSELF OR EVEN ASSUME A PRODUCTIVE "CRAWLING POSTURE". I KEPT MYSELF-SANE, BY THE THOUGHT THAT THIS STATE-OF-AFFAIRS WAS ONLY TEMPORARY, IN A COUPLE OF DAYS [WEEKS-AT MOST] I WOULD MOST CERTAINLY REGAIN THE USE OF THE LEFT SIDE OF MY BODY & THAT THIS-WOULD ONLY BE A BAD MEMORY... WELL, IT DIDN'T GO THAT WAY, FACT WAS THAT I BEGAN TO EXPERIENCE SUCH EXCRUCIATING AGONY IN VARIOUS REGIONS OF MY BODY THAT I KNEW, PRE-STROKE-WERE NOT INJURED OR HAD NOT SUFFERED ANY DAMAGE IN THE LEAST. THE PAIN INTENSIFIED BUT I JUST FILLED-UP ON Naproxen , ibuprofen, SMOKED AS MUCH WEED AS I COULD, & WHEN THE PAIN GOT TOO BAD-DECIDED THAT THE DEMON, ALCOHOL MIGHT BLUNT-THE EDGE. WELL SADLY, WHEN I BEGGED THE LOCAL NEUROLOGIST FOR HELP WITH THIS AWFUL PAIN, [THE SAME DOC WHO HAD DIAGNOSED MY STROKE IN ADDITION TO HAVING DONE FURTHER TESTING ON ME THAT REVEALED 2 OTHER ANEURYSMS LUCKING IN MY BRAIN, BESIDES REVEALING THAT MY carotid arteries were also clogged by plaque[wtf?!], he had his nurse respond back to me that I should go to my general practitioner for any medication for pain relief. THIS WAS ODD BECAUSE MY LOCAL PRACTITIONER -KNEW NEXT TO NOTHING ABOUT THE PAIN CAUSED BY STROKE INJURIES & ADMITTED AS MUCH BUT SHE TRIED HER BEST TO DO SOMETHING... ITS BEEN PRETTY TERRIBLE, I KNEW I WAS, ON MY OWN WITH THIS AFFLICTION IN MY LOCATION. ALTHOUGH I "WALK" [LIKE QUASIMOTO, ON A BAD DAY] HYPERVENTILATING, HUFFING & PUFFING , IT USUALLY REQUIRES THE USE OF 3-5 DIFFERENT BRACES THAT I BOUGHT FOR MYSELF IN THE ATTEMPT TO SPARE MYSELF FROM THE TERRIBLE PAIN THAT SUCH AN EFFORT REQUIRED. I'VE FINALLY ENROLLED IN A LEGIT POST-STROKE REHAB PROGRAM. GOTTA SEE WHERE THAT TAKES ME [NO PUN INTENDED] LOL!
  13. THANKS ED, I HATE BEING AS I AM!!! PLEASE EXCUSE THE USE OF CAPS BUT IT MEANS THAT I DON'T HAVE TO STOP TYPING TO PLACE THE DAMAGED HAND ON THE KEY THE SHIFT KEY-OMFG, LIKE MOST ACTIVITIES IN MY "NEW" HALF-LIFE, IT WOULD BE FUNNY IF IT WASN'T SO PATHETIC & IF IT WASN'T HAPPENING TO ME;} *SIGHS* MAKES A DIFFERENCE THAT THERE ARE OTHERS-OUT THERE-SOMEWHERE WHO REALLY GET WHAT GOING THRU THIS ORDEAL ENTAILS. I KNOW FOR A FACT THAT BEFORE ACTUALLY EXPERIENCING THIS NASTY LITTLE BRAIN BOO-BOO, THERE WOULD BE NO WAY THAT I WOULD'VE BEEN ABLE TO COMPREHEND THE HORROR, SHOCK, GRIEF, DESPAIR, & HELL ON THIS EARTH THAT MANY STROKE SURVIVORS HAVE TO BATTLE AGAINST -ON A DAILY BASIS JUST TO KEEP-ON, KEEPING ON... I WONDER IF I'M EVEN EQUIPPED FOR THIS KIND OF CHALLENGE? I MUST CONFESS WITH ALL HONESTY THAT MANY TIMES-I THINK, NOT.
  14. THANK YOU HEATHER, I'M STILL NOT QUITE CERTAIN HOW TO REPLY AS FAR AS THE SOFTWARE MASTERY IS CONCERNED;} IN ALL HONESTY, I HAVE NEVER BEEN ABLE TO ATTEND ANY POST-STROKE REHAB PROGRAM AS WHERE I LIVE- THERE ISN'T ANY THAT EXIST WITH ANY TYPE OF CREDIBILITY & USE OF THE LATEST TECHNOLOGY THAT MANY HAVE FOUND HELPFUL IN RESTORING [SOME] FUNCTIONALITY BACK TO AN AFFECTED LIMB. AND YOU'RE RIGHT, ITS BEEN ABOUT RELEARNING TO COMPLETE THE MOST SIMPLE OF TASKS-FROM SCRATCH, WHICH NOW REQUIRES 60-75% MORE INVESTMENT OF TIME & EFFORT THAN THE PRE-STROKE LIFE. WHERE AS I COULD DRESS MYSELF IN 3-5 MINUTES; IT NOW REQUIRES 20-40 MINUTES WITH NO COMPLICATIONS... FRUSTRATING, EXHAUSTING, & SOMETIMES-PAINFUL. THANK YOU FOR YOUR RESPONSE, BELIEVE IT OR NOT, IT HELPS TO KNOW THAT ONE IS NOT ALONE. BUT, OVER THE PAST 4-5 MONTHS I HAVE TRIED TO BE PROACTIVE & IN ADDITION HAVE BEEN MAKING PLANS TO ATTEND A POST-STROKE REHAB PROGRAM AT THE MAYO CLINIC, SOMEWHAT RENOWNED FOR ITS NEUROLOGICAL EXPERTISE. WE'LL SEE...
  15. Merry Meet to all ;] Post-stroke... there is nothing left of myself, the activities that defined my life, & the hopes, dreams, goals that I aspired to. What I am, now & who I was before the October 2, 2016 when I experienced a Lacunar stroke, right centrum semiovale, which has wrecked most of the functionality on the left side of my body. Although I can "walk [sic]" , I must constantly focus intently on balance, lifting my foot, & limb placement. The mechanics of movement are nothing like pre-stroke movement. My entire life had been focused on my passion for creating art; to that end, my hands & eyes were my most important tools. The flopping thing [claw] that was my left hand is a spastic, useless, lump of flesh that becomes swollen, cold unless I manually,use my right hand to "uncurl-the-fingers" & change the useless lump of flesh's elevation & position on a regular intervals. I've regained some large muscle movement at the shoulder & hip, but all left-side small muscle control is either too weak or non-responsive as to just to curl-up to be of any real use. Liken this state of disability to a pianist; having to relearn to play her/his instrument with a single hand. Could not care for my hair, properly dress & groom myself.,yada-yada-yada,, all I'm doing is ranting, so apologies but there's a need to be able to vent this anger, frustration, & despair somewhere...
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