thephoenix

SO I SAY JUMP AWAY )

well, your post was completely succinct . I get no sense of the'new rambling oyou" as yo put it. Your entry was completely clear andif you write your homily likeyou did that post,I'm sure you'll do just great. I was aed to be akenote speakrer at my workplace because it's not so commonthat a young healthy stroke doctor winds up having an unexplained massive stoke.I was asked to discuss my experiences nd I knew that when I said yes that tere would be lots of tears and there were but when you speak from your heart the people will uderstand no mstter how much you cry or tutter. they'll be right there with you. The room was filled with nurses; a few that I used to work wth. they viited me when I was in the hospital, sent flowes ad cards and pryed for me in person, over the phone with me and in their churches.There was such an outpouring of love I would get emotional thinking about how grateful I was to them for just supporting me so much, enter mor tears. Well I rsined myself to not look at the nurses I know thinking if I did I would definitelyspew tears and sob like a baby. In the end, I stood for the hour and gave my talk which was full of chuckles and quite few tears. there were ome slides I couldn't even read because the content made me too emotional But you know what, it didn't even matter thaI was crying like a baby I wasn't embarsassed one bit,mostly because everybody was crying with me I got tons of hugs and handshakes from people I hadn't yet met and it was cathartic and healing for me. I didn't feel ready but Im so glad I did it, One of my messages for the nurses that take care of brain injured patients is that i's ok for them to give teir patients hope I told them how two of the nurses did that for me when I was in the hospital and I related how I thought we didn't always do the best job of giving our patients hope because we're so scared of giving false hope we stay extremely vague when it comes to their recovery. Its somethingIm goingto change about my practice when m seeing patients again and it meant a lot to me that they get that point. I was afraid it would be lost in all of my sobbing. But it wasnt I had teary eyed nurses whom I'd never before met come up to me and say,"I'm going to do better. I'm going to tell my patients there is hope after stroke and that they can recover.if they're willing to put in the work.The two nurses tat gave me my first glimmer of real hope were named Mercy and Faith )whenI met them after they introduced themselves I repeated their names and said "oh Mercy and Faith good cuz I need both" I'm sure if you find a message you want to relate to the congregation and you speak from your heart you will be fine. If the emotions come, let them come as long as you're being yourself and relating something of grat importance to you let the tears out.I've since been invited to speak at three other hospitals and 2 support groups in the area. Soma previously severlyaffected patient who is recovering and they left with a bit of a different sense of their patients potential outcome and that oes my heart good because Mercy and Faith helped me tons by not being afraid to be positive and I was grateful that more nirses will now be out there doing it for their patients agood came from all my tears and Im sure a lot of them will approach their patients with a sense of hope. They don't often get to see people after or during recovery. they see them at their worst ad their outlook becomes shifted to a negative view of stroke outcomes because that's all they see. I was there to represent the possibility of recovery for their patients. Find a message in your homily that means a lot to you and tears or no tears youll be great )

Sorry Linda I just saw your question. The name of te book is Stronger After Stroke. its written by a lay person but as a neurologist I felt it held water and was quite accurate and very encouraging I'vre read it 2-3 times ) I forget the autors first name but I remember hi last name is Levine. Best

I have read your blog and the comments to my hub (2 hemorrhagic strokes 2009) because I am in the process of nagging him to use his LEFT HAND MORE.

 

It worked, he agrees.

 

Thank you for honestly sharing.

 

Rachel, caregiver

I'm glad he agrees o try it when I pened my office door I really could have fainted ) I practice what I preach and I know how hard and annoying it is but Im committed to it )It's like modified constraint induced therapy and studies showCIT works so I figure I'd rather be extrememly annoyed for a few weeks to months than live 1-handed for the rest of mylife. I'm only 38 so that's a lot of life yet to live and I'm not so interested in staying like this ) Nag on )he'll thank you later and give you two high fives too ) Best

thanks for your comment Imso guilty of this but Im focused on not falling into the trap of using myr ight hand only. The ' requests' are everything. that's why constrint induced therapy (CIT) where the unfected hand is restrained so it can't be used works. cuz if you're tied up you've got no choie but to try and use the weak limbs and after a week or 2 or CIT studies show those patients recover faster. than patients who did not have their normal limbsrestrained. I'd really go uts if I couln't use my right hand but I've got to get away from using it so much. even if I have to lift myleft arm into position with my right it's worth it. like when my PT used to move my left leg for me...all those steps were still worth it even though I didn't do them on myown. as long as I'm trying & requesting movements of my brain it will come )

I'm going to work on my arm and keep trying to do things I still cannot do. It worked for my leg. It was a long time before my brain figured out for itself how o pull my leg forward. I still remember it. I was getting into my bed and iI used to hook my right foot behind my left heel and pull my left leg u and into the bed but this day I sat down and just knew how to lift my leg into the bed. I thought to mysef. hey I think I can do that when I walk too. I could't wait to show my therapists and when I did they were really excited I went from being a patient that needed for people to walk with and being maximum assistance to being on contact guard which meant the PTs were nearby in case I lost balance but they no longer had to movre my leg for me. had I not kept trying to walk during that time my leg would be unusable t me like my sarm but the wheelchair was great motivation so I kep at it even whe I really couldn't walk without tos of help. So yeah I cannot yet do things with my arm.... Well not that longago I coyuldn;t walk either but I can now so Im just going to get focused and keep trying, What helps me is that Ive got videos of my first walks after the troke and my aboility and strength since then is obvious, glaringly so. I've just got to remind myself that I couln't walk but I kepyt trying and now I can ) Find your motivatuion whatever it is and keep at it. Keep the fauith and know in your heart that you will get better. Just as ou can walk now know you will get better ) know you are always in my prayers. as always all my best wishes for your full recovery and patience for the meantime )

As annoyingly painful as it is I've got to say just keep trying to use your hand. That's what doing and it irks me to no end but I know if I dont make my brain reconnec by tryng to use my hand it never will. Think about this: We all jbw that legs come back before arms right? Why is that? Some say its the weight bearing.. and maybe it is but I think its the effort we put into our legs. walking becomes a huge priority and we do it and keep trying to do it even when we can't My first' steps' safter the stroke consisted of 1 PT blocking my left knee with her knees so it wouldn't buckle when I put my weight on it. A 2nd PT literally pushed my left leg forward by placing her foot behind my heel and sliding my foot forward. Then I'd weight shift, get my weight on my leg and swing through with my norma right leg. I could't walk my first 100 to 1000 steps but I kept trying. now I've tried to open doors with my left hand and I cannot get my hand to open and grab the knob or twist and push but I know that I haven't tried o do it a thousand times yet either.... When I thibk of it like that it's no wonder I can do much more with my leg than I ca n with my arm; i've simply tried a lot harder with my leg because I must have taken a million steps sincethe stroke and that's a million prompts to my brain urging it to rewire. I f I'm breing hones I have to say I haven't tried to do a millio of any movement with my arm or hand So why am I surprised it's not back...? Of course it's not back. this all just means i've got to dedicate myself again to my hand and arm abd try to give them the same attention and input I gave my brain. That is where the keep trying comes in.I didn't want to be in a wheelchair so I kept trying to walk even when i couldn't and eventally my brain figured a lot of things out, not all because my walking is still awkward but I put in lots and lots of effort and I can easily walk 25 minutes on a treadmill non-stop I haven't yet given my hand and arm that kind of attention but Im going to start My leg got mch more stimulative inpput than my arm has received and part of my frustratoin is my spasticity.. I cannot open my hand or extend my arm s it's really hars trying to do anything with it but I still got out of bed and tried to walk everyday even when I couldn't swing my leg forward. I'm not giving up onmy sarm, I'm just going to get really tough and honest wityh myself I cannot expect to get more out of my sarm and hand until I put more into them They kindsa got shafted... I can do squats, bridges and stairs and tons of walking for my leg. Now I've got to get real about what I'm going to do for my arm and hand and I know I haven't done enough. I'm glad to read your positive attitude and pleased that you no longer see your therapy as pointless. When it gets hard;we've just got to work harder.

thanks for posting I have lots of spasticity on my left side and while I've been good about stretching I havent tried any prolonged stretching but I will now ) Best to you and thanks again for posting

Hry Birdie, I'm so sorry to hear how caged you feel but I get it. Stroke sucks big time and in the young folks like us I believe it's particulcrly devastating. I was just about to begin my career after finally completing 7 years of training after medical school and the stroke hits and everything is on hold... I still get anngry that this happened to me sometimes but when I get into that place I stop whate ver Im doing and take a few deep breaths in an effort to calm myself Always always let out the basdd feelings because they are poison that will ruin your progress and rob you of your hapiness. I'm grateful to still have lotsd of indepemdance, I drive myself and I get around town in taxi's h=when I don't want to drive because of traffic or parking considerations... That helps me to feel less burdensome and childlike. Im just staying focused on getting better and I've got plans for my recovery. Havbe you read any of the books written by other stroke survivors like Stronger After Stroke? Its a good book anmd I find it very useful for refocusing my perspective when I get down on the pace of my recovery. It helps me gather p my will and try again. I completely believe in the ability of our brains to recover I've seen it too many times and as a stroke neurologist I've learned the physiology that allows recovery to happen. I have to remind myself not to give up several times a dfay. I know that even though i cannot see coutward changes in my body when Im trying to use my left hand arm or control my distal leg or foot. Im focusing and nothing is happening... Well, nothing I can see anyway, tYou see all our continued efforts and attempt to use our weak parts makes physical changes in the brain that will enble us to relearn how to use our weak parts I know it willhappen it jut taked my continued effort, more patience than I ever knew existed in the world and time. But I can already do things now that I couldn't do months or weeks ago so I know it's happening. There s always HOPE after stroke. ALWAYS Never Give up pn your recovery. I've started an excercise regimine in t gym at my condo to supplemnt my outpatient OT and PT and I believe that too will help me to get back on my feet, without a can or an AFO. I know I willget there. Stay focused and don't ever give up ! Ever! your life is worth it and recovery is real nd achievable, it's no t easy but it is acgievable but onl if we keep at it ) trust me Im a doctor LOL but seriously though trust me.Its a philoophy that has taken me very far I've been driving myse4lf to and from work three days a week since lasy Aug and I live in Manhattan NY and work in New Jersey so I'm talking crossing the George Washington Bridge and using highways.. but Im doing it. I drive entirely 1 handed ( tright) as I still don't have control or udsse of my left hand but I'm working on it still.