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cypher

New. Wished I had not survived

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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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Hi cypher,

Ranting is fine here. we are here to listen, and though every stroke is different they are also enough alike that we get it.  You'll hate me for saying this but you're only 1 year into this journey don't give up yet. You will find that there is joy in this life if you are willing to go look for it.  I so get that useless lump of flesh that was the left hand.  Unlike you I have managed to re-find my left leg (mostly) but the left hand and arm are still a work in progress. Yes I cut my hair short, and I have to be careful about choosing clothes but I am functionally independent. (much as I hate that term as it doesn't capture how much I can't do like I used to)  But the key here is to find new ways to do stuff, It is possible. And with regular therapy and training the walking has become a lot more automatic.

 

Hang in there, keep working and know that you can beat this.

 

-Heather

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Mel

I totally understand as I too am over a year but a mere image of my former self and have trouble keeping it focused and together.

I hope you have a strong and  understanding family as that is the most important thing there is and don't give up no matter how hard it is 

Good luck and we are here for you

Ed

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Cypher, Your anger, frustration, and despair are very understandable.We've all been there a time or 2 . Please feel free to vent here whenever you need to. Know that we listen and understand. We "get it" because we've been there, and still go there from time to time. I  had a massive brainstem stroke about 11 years ago. I have been in a wheelchair since then.But, suddenly, at 7 yrs. post, I was able to do things like standing up on own, which I hadn't been able to do before.So, I went back to therapy to work on walking. I've made progress, but it's slow. I'm about where you are, I think,but nowhere near walking on my own, even with a walker. My point is that you never know. Your brain has its own timetable, and all you can do is to keep on trying.   Becky 

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Cypher,

  Your anger is very understandable and just. We all have had , and some still do, have felt the same way you do now. Many things that I'm sure you've heard many times like, " The first year us the hardest" and "Slow and steady wins the race" as trite as they must sound It is honest and straightforward as they come. I was once a 34 year old climbing the ranks in the banking industry as well as enjoying certain activates with my children. Since my stroke, I haven't been able to work nor deal with crowds to enjoy outside with my children.  

Each of us have had lost something dear to us and I'm not trying to diminish your struggle by tell you part of my struggle, hardly, rather let you know we are in the same boat with our feelings. Though I've not been able to do what I love, over time, like yourself, may find alternative ways to do what we like. Maybe not the exact thing but close or something you may not have explored. 

There is no time frame to when you will begin not to be angry at what happened.. In some cases, it may take years to not struggle with anger , I know in mine It took almost 5 years and I still get bummed when I can't deal with my issues but it is what it is. ya know.. Fair... Hell-o no but the only place to go from here is up. Persistence https://www.aota.org/about-occupational-therapy/professionals/pa/articles/stroke.aspx 

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You have all our sympathy and understanding. We have all had similar feelings to yours. I was fortunately very quickly out of it and the desire to fight emerged. This was all within the first two hours of my stroke. The plan to rebuilt as much as I can of my life has remained except for short bursts of questioning whether or not it is worth it. We look forward to more cheerful mail from you in the future.

Deigh

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just remember there is a person who was affected by their stroke more than you, be grateful of what you can do and not what you can no longer do.

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6 hours ago, ksmith said:

Cypher,

  Your anger is very understandable and just. We all have had , and some still do, have felt the same way you do now. Many things that I'm sure you've heard many times like, " The first year us the hardest" and "Slow and steady wins the race" as trite as they must sound It is honest and straightforward as they come. I was once a 34 year old climbing the ranks in the banking industry as well as enjoying certain activates with my children. Since my stroke, I haven't been able to work nor deal with crowds to enjoy outside with my children.  

Each of us have had lost something dear to us and I'm not trying to diminish your struggle by tell you part of my struggle, hardly, rather let you know we are in the same boat with our feelings. Though I've not been able to do what I love, over time, like yourself, may find alternative ways to do what we like. Maybe not the exact thing but close or something you may not have explored. 

There is no time frame to when you will begin not to be angry at what happened.. In some cases, it may take years to not struggle with anger , I know in mine It took almost 5 years and I still get bummed when I can't deal with my issues but it is what it is. ya know.. Fair... Hell-o no but the only place to go from here is up. Persistence https://www.aota.org/about-occupational-therapy/professionals/pa/articles/stroke.aspx 

You are so right.  The first year is the hardest.  Then the next hardest is the second year..... and so it goes.

 

Noise and crowds are terrible.  the family get together is tough.

 

I just pick on one of my weak areas or pain that I am dealing with.  Then I focus on it and only it.  Read web, look for books, ask doctors specific questions about that one thing.  I find that if I don't stay focused and try to do everything I don't get answers and I don't make progress.  I'll probably never get back to where I was, but I will find a way to have some kind of satisfaction.

 

I want to be able to ride a distance in a car.  It would be nice to drive.  Go on vacations.  I really would like to travel to Europe but my sight seeing would be like this.  Day 1 - see a sight.  Day 2 rest.  Day 3 - who knows.

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On 12/9/2017 at 4:49 PM, cypher said:

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...

Hi Cypher,

 

I don't know what kind of stroke you had, never heard those words, but let me give you some ideas that I use.

 

Regarding the hand - get a small ball, a squishy one like we played with as a kid or the stress ones they hand out at work.  Use that as you sit and watch TV.  Don't expect much, try to do 1 time, then 2, 5, and progress as you can.  There isn't a race.  But your brain is elastic and what you practice continues to build neural networks and things get easier.  It may not work, but you must try.

 

The second thing that I found that has helped me an awful lot was music.  I use headphones so the beat gets into my head.  Just listening in the room doesn;t work.  Picl music you like but it must have a  constant beat throughout.  My favorite is Eye of the Tiger.  Pick music that has a beat like that.

Sound is energy.  I think the sound hitting my eardrums turns into electric pulses in my head.  It has helped me improve movements when I listen to the music and work on various movements. 

 

I found out about the music by accident and I have posted about that before.  But I think it as is based on the PONS research from University of Wisconsin.

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On 12/9/2017 at 4:49 PM, cypher said:

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...

 

Hi cypher, and welcome,

 

When I had mine in '96 I said that if it happened again I didn't want to survive.  I didn't want to go through anything like that again, and I guess I still don't.  I came home from rehab in a wheelchair. swallowing was 'interesting', motion sickness, etc.,etc.  (Laundry list of deficits)

 

I have relearned  to walk, it took a while, but I did it - and now don't even use a cane.  My balance is still shot-to-sh*t, and I have to use a rollator when I'm outside.  (The 1st time I went to a grocery store and held onto a cart for balance felt incredible!  INDEPENDENCE!) 

 

As devastating as it is - humans are adaptable creatures.  Grieving losses is a given, and as some time passes focusing on what you CAN do will help.

 

Please vent away, as often as you need.  (We get it)

 

((((hug))))

 

 

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I have been thinking of your post and to be honest I get it, we loose more than parts of our body.

I feel like I have let down my family as I cant do what I once loved and could fix anything but now the fogginess runs my life  and that gets old.

Hang in there as that's all we can do and work toward changes .

Ed

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Hey Cypher

 

i get what you are saying.  My stroke was much milder than yours, almost two years ago.  I'm physically largely back to normal, memory will never be more than a shadow of what it was.  Social interaction is really stressful and tiring.

 

I look around at my family, who are only now starting to open up about how they felt when I was in ICU, and I am really grateful that I survived.  I still have days when I wish that I had died in the ambulance, as it would have been so much easier for me, but then I think about my wife and kids and I know that that's just a cop-out.

 

You will have to figure out what works for you, but I just look as far ahead as I can cope with in the moment. There are times when I think about the next 5 years, and times when I cannot even contemplate the next 5 minutes (that's when I focus on surviving the next 3 seconds)

 

As a general rule, things will get better over time, even with the ups and downs.  You'll learn a new life or a new way of living.  Things improve asymptotically over time, even if there are short term ups and downs.

 

Hang in there.  Hang out here.  Talk to us, we understand and we care.  When you cannot talk to those who are too close to you, hang out here and let it all out.

 

And please don't do anything foolish that you can't undo

 

 

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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...

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On 12/9/2017 at 4:35 PM, edkel1 said:

Mel

I totally understand as I too am over a year but a mere image of my former self and have trouble keeping it focused and together.

I hope you have a strong and  understanding family as that is the most important thing there is and don't give up no matter how hard it is 

Good luck and we are here for you

Ed

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.

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On 12/9/2017 at 11:55 PM, becky1 said:

Cypher, Your anger, frustration, and despair are very understandable.We've all been there a time or 2 . Please feel free to vent here whenever you need to. Know that we listen and understand. We "get it" because we've been there, and still go there from time to time. I  had a massive brainstem stroke about 11 years ago. I have been in a wheelchair since then.But, suddenly, at 7 yrs. post, I was able to do things like standing up on own, which I hadn't been able to do before.So, I went back to therapy to work on walking. I've made progress, but it's slow. I'm about where you are, I think,but nowhere near walking on my own, even with a walker. My point is that you never know. Your brain has its own timetable, and all you can do is to keep on trying.   Becky 

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!

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On 12/10/2017 at 11:20 AM, ksmith said:

Cypher,

  Your anger is very understandable and just. We all have had , and some still do, have felt the same way you do now. Many things that I'm sure you've heard many times like, " The first year us the hardest" and "Slow and steady wins the race" as trite as they must sound It is honest and straightforward as they come. I was once a 34 year old climbing the ranks in the banking industry as well as enjoying certain activates with my children. Since my stroke, I haven't been able to work nor deal with crowds to enjoy outside with my children.  

Each of us have had lost something dear to us and I'm not trying to diminish your struggle by tell you part of my struggle, hardly, rather let you know we are in the same boat with our feelings. Though I've not been able to do what I love, over time, like yourself, may find alternative ways to do what we like. Maybe not the exact thing but close or something you may not have explored. 

There is no time frame to when you will begin not to be angry at what happened.. In some cases, it may take years to not struggle with anger , I know in mine It took almost 5 years and I still get bummed when I can't deal with my issues but it is what it is. ya know.. Fair... Hell-o no but the only place to go from here is up. Persistence https://www.aota.org/about-occupational-therapy/professionals/pa/articles/stroke.aspx 

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?

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Cypher, One of the things that makes stroke so difficult to deal with is that NONE of us were equipped to deal with it.Where do we start? How do we start? And,my personal favorite unanswerable, "Why?"  If someone had asked me even a yr. before my stroke, how I would deal with the loss of the use of the left side of my body, I'm sure I would've said that I didn't know. But, here I am,11 yrs. later, typing this post, while sitting up in my wheelchair.

   My point is that you will learn, just as we all have learned, or, are learning, how to deal with your stroke deficits. Therapy will help with this. You will discover that you  can do alot more than you know, and learn ways of coping with what you cannot do by doing things a different way. It will be hard and frustrating, but rewarding. You probably won't get all of you back, but you can minimize your losses. Hang in there,and keep on trying.   Best, Becky

 

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On 12/10/2017 at 1:57 PM, Deigh said:

You have all our sympathy and understanding. We have all had similar feelings to yours. I was fortunately very quickly out of it and the desire to fight emerged. This was all within the first two hours of my stroke. The plan to rebuilt as much as I can of my life has remained except for short bursts of questioning whether or not it is worth it. We look forward to more cheerful mail from you in the future.

Deigh

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:}

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On 12/10/2017 at 2:18 PM, banjo said:

just remember there is a person who was affected by their stroke more than you, be grateful of what you can do and not what you can no longer do.

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.

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On 12/10/2017 at 11:20 AM, ksmith said:

Cypher,

  Your anger is very understandable and just. We all have had , and some still do, have felt the same way you do now. Many things that I'm sure you've heard many times like, " The first year us the hardest" and "Slow and steady wins the race" as trite as they must sound It is honest and straightforward as they come. I was once a 34 year old climbing the ranks in the banking industry as well as enjoying certain activates with my children. Since my stroke, I haven't been able to work nor deal with crowds to enjoy outside with my children.  

Each of us have had lost something dear to us and I'm not trying to diminish your struggle by tell you part of my struggle, hardly, rather let you know we are in the same boat with our feelings. Though I've not been able to do what I love, over time, like yourself, may find alternative ways to do what we like. Maybe not the exact thing but close or something you may not have explored. 

There is no time frame to when you will begin not to be angry at what happened.. In some cases, it may take years to not struggle with anger , I know in mine It took almost 5 years and I still get bummed when I can't deal with my issues but it is what it is. ya know.. Fair... Hell-o no but the only place to g

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).

o from here is up. Persistence https://www.aota.org/about-occupational-therapy/professionals/pa/articles/stroke.aspx 

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.

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Hi cypher,

I won't try to cheer you up at this point but will tell you a coupled of things I have learned so far.  But I know what you mean you didn't have the symptoms.  Me neither.  I woke up on a Sunday, the day before I had hiked about 4 miles in a park nearby.  Thought I was in decent shape too.  No paralysis, no slurring, etc.  Terrible headaches, can't walk - balance destroyed, and room spun so hard I prayed to God that I wouldn't be thrown off the bed (seriously),  and very very weak.  Oh yea and had to vomit a lot.  Thought it was a bad case of flu.

 

But you are getting yourself dressed.  Not going to minimize that.  That is part of your therapy.  You will eventually learn how to do that faster with less effort.  Your body will determine how fast that is and how far you can go.  After that, you will find things that you now want to do, but now have to learn how to do that.

 

When I started on my recovery, first thing I had to learn was how to move my feet back to take a step back.  Couldn't stand on tip toes, even holding on, just couldn't send a signal from my brain that knows how to do it to feet that know how to do it.  That sucks.  Keep pushing.  There is an old saying.  "When the pupil is ready, the teacher will appear."  I find teachers show up at weird times and teach me something I needed to know at that point.  Remember you are the pupil - when you are ready..... your teacher will be there.  (You aren't ready for this, don't worry. there is no expiration point) 

 

I try to study and learn new things.  I forget most in a day and don't remember I did many things.  I don't know if that ever gets better.  But I keep trying.

 

And try to have a nice new year day.  Mine will be quiet but I will try to do something simple but differenet.

 

John

 

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On 12/10/2017 at 6:33 PM, stockflyer said:

Hi Cypher,

 

I don't know what kind of stroke you had, never heard those words, but let me give you some ideas that I use.

 

Regarding the hand - get a small ball, a squishy one like we played with as a kid or the stress ones they hand out at work.  Use that as you sit and watch TV.  Don't expect much, try to do 1 time, then 2, 5, and progress as you can.  There isn't a race.  But your brain is elastic and what you practice continues to build neural networks and things get easier.  It may not work, but you must try.

 

The second thing that I found that has helped me an awful lot was music.  I use headphones so the beat gets into my head.  Just listening in the room doesn;t work.  Picl music you like but it must have a  constant beat throughout.  My favorite is Eye of the Tiger.  Pick music that has a beat like that.

Sound is energy.  I think the sound hitting my eardrums turns into electric pulses in my head.  It has helped me improve movements when I listen to the music and work on various movements. 

 

I found out about the music by accident and I have posted about that before.  But I think it as is based on the PONS research from University of Wisconsin.

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...

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Hi. Dancing that is so cool.  I can't dance just ask anyone around me.  before or after stroke.  But you reminded me of something else I do.  I call it working out with my girls.  I find different work out videos that women do.  just stretcing or dancing or whatever and I try to copy the move.  usually they have completed 8 and I am just finishing my first or starting a second.  But I have gotten faster with some movement - when I do some of them well (new definition) I feel like I am dancing. :clapping:

 

Don't try to get too bummed out since you can't do what you used to.  I can't either.  I loved my work and the people I worked with, now just at home.  Trying to relearn what I used to know.  Sorry to hear about your child, that is a tough one.  My son had seizures as a kid, but has outgrown them.  But yours is a different battle. Gonna try to go to bed now.  Talk later.

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My loves prestroke were exercising,working on my two vintage cars, and playing music. I have been in bands all my life and truly enjoy the interaction and creativity of a group effort. So, now I can not do any of those things. But I can cook, walk some and enjoy eating out and visiting people. I can do those, but I worry about will I ever drive again? My cars are manual trans which would be impossible for me. The guitar is a future dream, and walking any distance is not yet happening.

a friend of mine had her friend who survived a much worse stroke than me call me. He has been inspiring as he now runs 6 miles a day and can drive and function.

he did what I  am doing, setting achievable goals and seeing them met, hopeful the future is bright, though the road is long. 

Find something to live for, maybe reading ar  whatever exercise you can do daily. I do lunges holding my cane , step ups on our staircase bottom step, and just added. Crunches, which at first scared me, because getting on the floor, though a carpet, was daunting. I focus on Spring because I will be able to walk outside and feel the sun, and smell the blooming trees. Life is still a gift, and I am glad mine has not yet been taken away. Best wishes to you for healing.  

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I can walk, drive, dress myself and most anything but the world is not  focused and I hate that, cant run and have terrible aches but deal with them and just deal with the fogginess, what do you do. I have looked up a place on You Tube I would take my sand rail to to in California called Glamis and to be honest all I want to do after watching is crawl under a rock and go away. How are we to live like this, this is not fair but what do we do.

Hang in there and happy new year

Ed 

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