Ken1950

HI EVERY BODY AND THANK SO VERY MUCH FOR THE INFO. SHARED AND THE WELL WISHES. KAREN AND I WILL BE LOOKING AT DOING A LOT OF WHAT WAS PUT OUT THERE. WE LIVE IN NORTH CAROLINA AND ONE OF MY CURRENT NERO.DOCS. IS LARRY GOLDSTEIN HEAD OF DUKE STROKE. IT IS HE WHO PICKED UP A DECREASE IN COGNITIVE ABILITY. I HAD THE 10 HR TEST THERE 3 YEARS AGO WHEN THEY FIRST FOUND THE DISABILITY. HOWEVER NO MEDS FOR IT AND THREE THINGS TO DO. EXERCISE, I DO. HEART HEALTH, I AM. SOCIALIZATION I TRY AS MUCH AS I CAN. SO BEFORE GOING THROUGH ANOTHER 10 HRS. KAREN ASKED WHAT CAN YOU DO??? WE TALKED WITH A NERO. NURSE AND A PHD AT BEHAVREALHEALTH AT DUKE AND NETHER COULD SAY WHAT THEY WOULD BE ABLE TO DO. IT IS 3 HR ROUND TRIP IF IT WOULD HELP YES BUT... I AM IN TALK THERAPY AND HAVE A PSYCHIATRIS WITH THE SAM GROUP. MY GP & LOCAL NERO. WORK CLOSE AND THE UROLIGEST I STARTED SEEING FIRST FOR THE ED THEN ON WITH THE INCONTINENCE. AS FOR THE PAIN DUKE PAIN HAS A LOT TO WORK ON. I WAS PUT ON A DRUG , ONE OF THE EPILECTIC ONES, REACTED AND IT TOOK 72 HRS FOR HIM TO CALL BACK AFTER BEING PAGED AT LEAST 6 X MESSAGE LEFT AT CLINICE AND EMAIL SET FROM PSYCHIATRIS I WAS SEEING AT DUKE BEFORE HE LEFT. THEN TRYED SECOND PAIN DOC. ANY WAY OVER 5 YEARS A LEAST 15 DOTORS AND 30 DIFFERENT DRUGES I AM DOWN TO 5 DOCS. I TRUST BUT AM ON 7 DAILY RX MEDS 1 PRN MED 4 OVER THE COUNTER MED AND 3 PRN OTC MEDS. I AM SEEING TALK THERPIST TODAY AND HAVE APPT. WITH GP TOMARROW. WE WILL SEE WHAT THEY SAY. KREN HAS FOUND A WEB SITE DRUGS.COM YOU PUT IN ALL YOUR MEDS AND IT WILL PRINT OUT WHICH ONES INTERACT WHICH EAH OTHER AND HOW SEVERE REACTONS CAN BE. SO WE WILL BE INFORMED. WILL SEE WHAT CAN HAPPEN . THANK YOU ALL AGAIN PLEASE KEEP THINKING HOW THIS MIGHT BE DONE AS INPATIENT INSTEAD OF RUNNING TO ALL THESE DOCS. BY THE WAY BEFORE BEING PUTOUT TO PASTURE I WORKED AS AN OPERTING ROOM AND ER TRAUMA RADIOLOGIC TECHNOLGOIST FOR 30 YS. AT A TRAUMA 2 CENTER THE OTHER TEN AT COMMUNITY HOSPITALS AND CINICAL AND CLASS ROOM INSTRUCTING. THAT BEING SAID I AM DEEPLY SORRY MY LIFE PROFECION DOES NOT REALY KNOW HOW TO CARE FOR THOSE OF US WHO ARE SURVIVERS AND THEIR CARETAKERS LOVE TO ALL GOD BESS KEN AND KAREN

HI I AM KEN 1950 EXCUSE CAPS. NOT SHOUTING HAVE TROUBLE REMEMBERING WHEN TO USE UPPER AND LOWER SO I US UPPER ONLY. IT HAS BEEN AWHILE SINCE I HAVE BEEN ON THE NET OR IN CHAT ROOM. AFTER MY 4 STROKES THAT WERE CAUSED BY PFO I HAD THE HOLD CLOSED AND SO FAR NO MORE STROKES. HOWEVER FROM THE FALLS I HAVE HAD 3-4 CONCUSSIONS. I ALSO HAD A BIG ONE WHEN I HYDROPLANED OFF ROAD AND ROLLED THE CAR PUTTING FENCE POST 6 IN FROM MY HEAD. MY ANGLE WAS AND HAS BEEN WITH ME. I DO NOT HAVE SERIOUS DISABILITIES LIKE SOME OF US BUT WHAT I HAVE HAS CHANGED MY LIFE FOREVER. I HAD SOME PROBLEMS BEFORE THE STROKES BUT THEY WERE PRETTY MUCH UNDER CONTROL. AFTER THE STROKES THOSE PROBLEMS GOT WORSE . BUT DID SEEM TO IMPROVE SOME OVER TIME. SINCE THE CONCUSSIONS THOUGH EVERY THING HAS INCREASED 50% OR MORE. THE MOOD SWINGS, MEMORY LOSS, GETTING LOST WHEN OUT , I HAVE A GPS KNOW TO FIND MY WAY HOME.THE INCONTINENCE WAS BETTER TILL I REACTED TO THE DRUG VESICARE, I WAS FOUND BY A NEIGHBOR PASSED OUT . HAD SIMILAR EPISODE 3 YEARS AGO AND IT SEEMS BOTH DRUGS HAD A FORM OF QUININE IN THEM. SO THEY TOOK ME OF THAT AND THE INCONTINENCE IS BACK SO I STAY HOME. THEY HAVE PUT ME ON SO MANY DRUGS. ADDED TO ,INCREASED, CHANGE TO SOMETHING ELSE AND NOT A THING SEEMS TO IMPROVE. NEUROPATHIC PAIN RUN 4-6 24/7 INCREASING TO PLEASE GOD CUT MY ARM OR LEG OFF. MIGRAINES ARE UP TO 4-5 A MONTH WITH MILDER ONES IN BETWEEN. THEN TO TOP OFF EVERYTHING ELSE I CAN NO LONGER PERFORM MY HUSBANDLY DUTIES. MY WIFE IS A SAINT WITH WHAT I PUT HER THROUGH. WE LIVE VERY RURAL SO SUPPORT GROUPS ARE A 30 TO 60 MIN. DRIVE EACH WAY. I GUESS I ' M ASKING IF ANY ONE HAS FELT SO LOST AND SO ALONE . IS THERE A PLACE ,REHAB. HOSPITAL OR SOME PLACE TO GO FOR A WORK UP AND GET THINGS ORDERED ALL AT ONE TIME TIL THEY WORK. IT SEEMS A HIT AND MISS AS AN OUT PATIENT. I HAVE PRIMARY WHO IS GREAT TO ME BUT THEN THERE ARE 5 OTHERS RIGHT NOW AND HAD BEEN ANOTHER5-6 THAT I FIRED. I AM JUST TIRED OF NO SLEEP, HURTING, FORGETTING, NOT KNOWING HOW TO DO SOMETHING ,FOR GETTING AT I WAS GOING TO DO AND ALWAYS SAYING I AM SORRY. SO PLEASE LET ME KNOW IF SOMEONE FOUND A WAY TO DEAL WITH ALL OF THIS OR PLACE I CAN GO. THANK YOU AND GOD BLESS YOU KEN 1950 & KAREN

Hi everybody: Been a long time since I was around you all. The great doctors at DUKE decided that I needed to have a new battery of tests. It seems the medication they were giving me for the CORE pain was causing all kinds of reactions on me. Along with that, since DUKE is a research and teaching hospital some of the doctors have very poor patient care skills. I had to go into the hospital for ten days of detox from one med be for they could start a new one. Once I was on that new one it did not work so they backed me off and brought in an EXPERT ON PAIN MED :roflmao: :roflmao: :roflmao: :roflmao: His education looked great but when I had a major reaction after only three doses it took me sixty hours to get a call back. You heard me sixty hours the he said "I guess we will have to try something else. DO you think so????? On we went with a new med but a close cousin to the one I was just on. It too gave me problems and after twenty four hours I went to administrators, department chair,and patient advocates and it was still two days till he called and wanted Me to stay on the med and see if things would get better or worse:uhm: :uhm: :uhm: :uhm: I said NO and YOU ARE FIRED So I am off all pain meads and am just working thought it. I am so fed up with the lack of caring buy some of the medical staff and all the recordings to leave messages and then no call back in a timely manor. After all this I spent nine hours having a test to measure my cognitive ability which I failed to a degree and then a four hour test to see if I have ear problems that were causing me to fall. I passed that one my hearing and ear structure is just fine so it is the dead brain cells that get screwed up and I fall. You would think that with all the great minds looking and all the testing being done the health system could help us who have had strokes get some relief from our pain, depression ,and the feeling of loss that I believe we all or at least some of use have. It keeps us home and out of sight as people do not under stand us. Our CAREGIVERS GOD BLESS THEM DO but it is a great pressure on them also. Enough of my feeling sorry How are all of you doing I will try to get back to chat room soon I, have missed you all and pray some of you are making forward movement I seem to be at a stand still for right know but the fight is not over. And as I say THE GOOD LORD DOESN'T WANT ME YET AND THE DEVIL:devil: WONT HAVE ME BACK SOON Ken 1950

Hi Lydia As asha said it is all slow motion . The LORD for what ever reason has said hay LYDIA slow down look around. There are going to be some limitations on you for know. Rest up and then look and slowly find that new path, I have set for you. I really believe this. I worked 40 years in the medical field, saw all kinds of injury and sickness. I was starting to slowly burn out but would not quit till my strokes. This forced me to reevaluate my life and what was out there for me to move on to. I think that perhaps that is what you are going through so keep your eyes open your trust in the Lord and he will guide you. On to something new and wonderful. A new trip in life if you will. Ken1950

thank you I will try that

Hi every body It is nice to see spring. I have been to see my new doc. several times and the med. changes are still going forward. I am able to use my left side but it is not what it was before the strokes. Has any one ever been told or do you now about CPSP [CORE POST STROKE PAIN ]?? Well it seems I can add that to my life style. I have always had a heaviness in my arm from the shoulder down. the leg goes from heavy to numb. About this time last year I had some like electric shocks in the lower leg and foot. We thought it was the brain doing some reconnecting. But I have started to have cramps and burning in my upper leg now that at times want me to just cut it off. the back of my shoulder is an ache all the time. That heaviness seems to stay all the time and the pain increase when ever it wants. Not to sure what to make of this ? The doc. were told but it has gotten worse over time. I will see one of them next week and ask what to do, meds stretching yoga anything. I just wanted to know if this just ME our have any of you had this happen? what have you all done if any thing that works? So far ben gay or moist heat seem to help a little. Thanks for your ear any help would be great. O yea I found cpsp on line it is every thing that I have been going through so I am pretty sure that is what it is.

Hi Every Body What is he talking about ?? different and the same ?? Well I think we are we have all had big changes in our lives . Some of us are younger then others some of us have caregivers some do not some have people who understand US some of us do not . We all have different limitations but we all are limited in some way. My Karen is about ready to break out and run screaming. She has every right too . Why because I just start screaming or crying so why not her. We are all in this together. some times we the survivors need time alone as do our care givers. This week has been hard as I have needed more care then usual. It seems last Monday we were getting ready to see the CPA and find out how much the Government was going to sc---- us so Karen is upstairs ready to shower when I finish down stairs in my bathroom, got the picture, OK so I am going up the satires she is getting in the shower and two steps from the top I fall. head first on my left side [ my weak one] all the way down . Since my clothes were upstairs I was in what the good lord gave me sixty years ago. After a second loud scream who should appear at the top of the stairs in what the good lord gave her yep Karen down she comes to see if any thing is broken and sure enough. looks like my hip and ankle maybe. So what do two adult grow up people do we start laughing as hard as we can at this weird sight. So it is a few steps back and a lot of upsetting things between us but we will get through this as we have gotten through every thing that has happened before. We try not to look to long at the bad things and laugh a lot at the others. I think what I am trying to say is yes we have different problems and they hit us in different ways but if we can just laugh at those funny times the sad times wont be so bad. Just a thought. O yea after getting to the hospital and having been pocked an man handled the xrays showed no breaks just bad sprains and some real pretty bruising from the blood thinners. See you all later

jUST REMIND Charlie nhe is only a petty officer you are the CAPT. you two will be fine talk and most of all listen that is from an old NAVY man There is not a thing that can not be over come Charlie knows that from his training you just have to look , listen and trust in each other GOD BLESS you both and you family and rember there is a new family forBOth of you here Ken

right back at u girl when I am down it is her that I come it seeems to help knowing you are not alone with your problems your depression your not wanting to huet nother and all that stuff as the tirle goes to a great song 'WE ARE FAMILY' KEN

ITS ME AGAIN Some time has gone by since I have bloged so let me start by saying my wife has started a little riot here in Caswell co. N.C. We have a new animal cruelty law about starving an animal ,making it a felony vs misdemeanor. As you can guess both my wife and I are great animal lovers. Before my strokes we were animal cruelty investigator for the county. We also served and still do on our animal protection society. Though she goes to more of the meetings then I do know as I have a tendency to explode or cry or laugh you know all that fun stuff some of us deal with every day. It seems that we had a bad boy [33 yrs. old] who did not want to feed his three dogs that were chained together with only one dog house. Soooo He will be the first around here to go to court on three felony charges. The thing is this county is so rural and so inbreed that there has been a total news black out on the case. The sheriff's office has no comment, the DA's office has no comment, Animal control and county manger have no comment. This has started me to thinking of what I can do also. If my wife can write a letter to the local paper about this and receive over 50 comments that is something. Know she has shown me how she told some friends of heir's on face book and this thing has gone international. There are four or five animal groups watching and some starting petitions. It is a wonder to me. Perhaps I can be of help and be heard from this computer. May be my new life is down this road? You may remember that I worked in the medical field for forty years before my first stroke and worked for another year till the third one took me down. That was almost eighteen months ago and then the fourth one and heart surgery . It just put me down, not wanting to be the burden, not want to see my wife have to watch over me. Not even wanting to get out of bed some days. But all this new electronic stuff is starting to open up a new road for me. I can go out alone with my GPS. So I can find home , with my cell phone to call for help if needed. Know maybe my computer can help me help some of the animals I love so much. I guess what I would like to say to myself and any one who reads this is. Part of me was lost with those strokes but you can not sit around feeling sorry there are other roads to follow and you have to at least try so that is what I am going to do. So look out world here I come. But I will always remember something I heard in the NAVY many years ago ' THE ONLY EASY DAY WAS YESTERDAY' love to all Ken

Hi all. I am still trying to get this computer stuff figured out it was hard enough before the strokes know it is , well lets say a bit more. I am off my old meds ssri and on the new stuff snri as of today the new shrink at Duke is hoping to see if all or some of the depression and mood swing and anti social feelings are psy. related or are they due to the four areas of damage and as he said short circuiting of the brain. Sounds like i loose with ether way . but we all have to look at all of our options and make the best judgment from that. He also said I might need to have a two to three hour test on cognitive thought and memory if the new meds do not seem to work any better then the old ones. I am sorry for all of you covered in snow Karen and used to live on Long Island N.Y. but know in N.C. with less snow but we still get snowed in and not as much as some of you all. So stay in stay safe and spring will come as two days ago a flock of twenty to thirty robins stopped in my yard for a rest as they were heading not a sure sign of spring. who would have thought any of use would be where we are today wasn't always the other guy with bad luck those other people who talked funny or walked strange or like me forget what I had for breakfast or if I took a shower today. But hear we are a lot of us talking on this crazy INTERNET and supporting each other let others know you are not as bad off as some worse then others but we all share love of each other and love of family i hope but some of us do loose some family some friends . Their loss as we are the lucky ones to see life in different ways they look only as a handicap what a shame. After forty years of health care work and giving to others I know have to change I can no longer do patent care as it would not be safe for the patents. where to go ? I am thinking of helping with animal reform stopping cruelty educating kids that animals have feels and a purpose on this earth after all God did make them first so the is always hope for us we need to look and take ore time as I have said before "what i did all day takes me all week to do know " but so what it still gets done. One last parting thought about my looking at helping animals was some thing i read "THE GREATNESS OF A NATION AND IT'S MORAL PROGRESS CAN BE JUDGED BY THE WAY ITS ANIMALS ARE TREATED" Gandhi love to all back soon Ken

this is my first time on a blog. it is also new for me to be on a computor. i had my first stroke in nov. of 08 then a tia in march of 09 along with a lot of stress from work and family that year was one i do not want to relive. lost my mom to colon ca had 8 weeks of gi bleed myselt not ca but part of cirulartory promblem. then dec 28 another stroke on the floor slered speck no feeling on left given clot buster med and sent to what was to be the begining of another year i would not like to live over.my nero md. found that i had a pfo and sugested i go into a research study he had. being trusting and thinking family will take care of family[ i worked in radiology for 40 years by this time] into the study i go. by chance ? i am put on the med. side and the hole in my heart is to stay open. the short of it is i was given some bad advice i found out the hole could be closeed outside of the research which was not what my wife and i were told before i could get to duke hospital to have the closer i had an other stroke so here i am today 4 stokes a hole in my heart closed and looking at a life at home with left side weakness left side neglect vison loss short term memory gone long term does work and is that a hout to remember one to two days after you read or hear something i am having my meds adjusted know to see if we can work on this depression and emotional liabilty that i have one of my new doc. at duke may want to do more testing but first wants to get new druges on board and all this time my wife karen has been right there you caregivers are something else god bless you all and what love alowes you to put up with if this is sounding like i am feeling sorry for myself i am not i am very thankful that i still have many of my abilities more the some of you all have it has been hard to acept being a stroke survivor but i am always trying to move forward you all out there have helped me more then you know and a big big thank you i only hope my bloges and talks in the chat room with you might help one of you that is the old caretaker in me since that is what i did for most of my life know i need the takeing care of to a point i am starting to ramble so i will leave it at we all can only do as much as we can at this time and should never give up for there is always someone who is worst off the i may god bless you all

karen know that the lord does hear our prayers he will answer them and we must trust in his grace. my karen and i will put you both in our prayes just know we two are just the tip of a very big and expanding love and prayer chain for both of you ken

hay girl this is ken hang in there i am going in jan to a new shrink who may be able to fine tune my meds as they are not as good know as they where i think and this just me after a while your body can get use to them and u need to fine tune them as i have pba i am hopping he might try the new fda approved drug that is comeing out might help with mood swings and the prozac is not working as well so maybe something else but all have to work with bloodthiners and statanes a lot of different things with many diff. druges i pray this doc is the one who can over see all my meds if so you too can find someone who can help u donot give up do not ring the bell with you and yours praying for all of us ken

HI Jesssica and Matt I am ken 1950 had 4 ischnic strokes and heart surg. in last 2 years lost my prof. of 40 years but i know GOD is with me you will have a lot to learn and deal with first dec 12 8 pm est newbie chat is open to talk to people and find some was to look for help ynca is great i will be starting in Jan to wok on left side wakness and sencory loss all i can say the people here will listen give advise point you in right direction but you have to be proactive keep all your records ask a lot of questions of the med. people you see they do not have all the answers all the time but if pressed they have ways to help you also if you are of the mind look to your own higher being be christ allia buddah or who ever it does help me pehaps it will you I hope to talk with you both soon do not forget there is support for us who have had the stroke and those of you who have to put up with us the intewrnet is full of info. surf look then ask my e mai is karenandken@mebtel.net if you want to talk to me or my wife Karen you are prob. or kids ages as we have grand kids 18 and 19 may god bless and may you find the new path of life you are to walk ken 1950

Hi Jillian I am Ken it took me a lot longer to find this web page but it is full of love , hope and just plain understanding. My first stroke was Nov. o8 had one more Dec. 09 and 2 TIAs inbetween but that does not mean you will go throught that we all have had different experances these are mine. I had to retire early at age 60 since i could no longer work in radiology as i had for forty years. how that from caregiver to a stroke suvivore I am better off then some and worse then others but time does heal along with the ability to fight back my short term memory is very poor but the fun part is I forget what i was mad about soon after. my worst thing are mood swings like laughing when I am sad or crying at something that realy makes me happy My wife takes the brunt of all of this but understandes that we will get through it with each others help and understanding When I was young I went through some training in the milatry and if things got to tough all you had to do was ring a bell and you were mustard out of the program I did not ring that bell and I sure as H>>>>>> won't do it know Life is just takeing you and the rest of us down a different road so sit back hold on and push your way to what ever is ahead hope to see you in the chat rooms I will be the old man with gray hair going by KEN1950 hang in there it is just a different road not a scarey one unless you let it PS we are somewhat of neighbors i live in N.C. just below Danville VA