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LOOKING FOR SIMULAR PROBLEMS AND SOULATIONS


Ken1950

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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

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Ken, no advice, just to say welcome back to the Blog Community. As you know someone will be along soon to reply in a more helpful way.

 

(((hugs))) from Sue.

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Maybe a fresh perspective of all your drugs ? - easier said than done right ? but maybe a nuerogolist needs to review and make sure all the meds you are on are appropriate and the doseages correct. - here a example - my dan was having seizures he was titrating up on the drug lamictal ( slow climb) but had a severe seizure at the hospital was given dilantin IV - which then was changed to dilantin in pill form.. we kept checking his lamictal level and it just wouldnt budge hardly . finally the nuerologist noticed he was on both and realized that with they are not contraindicated they are adversarial drugs .. so pharmacy didnt catch it either.. and pain management can be difficult - dan- when he was having severe pain with his nueropathy we found even the morphine drugs didn't help much but valium would --- a very kind doctor - who just cared knew this... if he would continue to have more severe issues we would try the drug elavil - which is psychotropic drug .....husbandly duties - it is probably not all that big of a deal to the wife - trust me on this - ... i kinda think maybe if the pain could be addressed then some of the memory issues might be helped - it is so hard to remember anything when you are in pain...maybe some of the other wonderful people on stroke net will also chime in - these are just my thoughts -- and i am not a medical pro - by any stretch of the imagination...good luck !! nancyl

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Ken: some suggestions. One thing at a time. First off, if you are that disoriented that you need GPS to get home, you should not be driving.

 

You need to take one issue at a time and yes, you need one Doctor to manage all the specialists. First off, the pain. Get online and see if you have a full service Outpatient Rehab close. Then get the referral from your Neuro or PCP.

 

Have an evaluation from PT and OT. Set up an appointment with a Physiatrist - note the spelling. This is a muscle Doc, not a head Doc. Then you need an evaluation from Speech - your memory issues and your speech.

 

Now, I am thinking all of this may not be available to you, in your area. That is OK. Your Neuro can handle the referrals and deal with the evaluations.

 

I want you to keep in mind that most medications that affect your muscles will also affect your bladder. Bladder is not the same muscle as your legs, arms. So it needs a different medication to help with the incontinence. You may not need a Uro - again your Neuro or PCP probably just needs a heads up.

 

But for you: rest, exercise and healthy eating. Have your PCP review all the medications you are currently on. I don't care what specialist ordered them. One Doc needs to be in charge. You need a Neuro check up for those migraines and an antidepressant. Make a list, make an appointment with the Doc you trust the most and start over. Things have changed and have to be reviewed. Please do let us know, Debbie

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Hi, Ken, my hubby had a massive stroke Feb 29, 2012. You are not alone, there are lots of stroke survivors here, or their caregivers, who are going thru the same maddening things you are, but are making it. Hang on.

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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

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Ken: thank you for checking back in. A terrific game plan. And make sure you bring that medication list with you to Talk Therapist and the GP. Please do let us know how the appointments went. Debbie

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