Super Mario Posted May 1, 2012 Share Posted May 1, 2012 Read this about aftercare of stroke and SAH survivors, how very true, took a survey to highlight it. Not as though any notice will be taken of it. http://latestnews.virginmedia.com/news/uk/2012/05/01/survey_reveals_stroke_care_failings Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 1, 2012 Share Posted May 1, 2012 (edited) I agree totally Penny...thanks for link ... but it's what our families knew and went through when we were out of it...... No stress after SAH they say...but they put everything in your way...like been waiting for a wheelchair for well over a year ...... instead hubby had to buy one.... wheel fell off one they gave me chair wobbled and went into road...My hubby was furious....I was strapped in and was dangling lol sounds funny..l and bet I looked funny...lol...Glad I cannot remember x got giggles now I complained that OT never turned up .."oh so you do not want her"....No not after her staying approx. 10 mins a week and hurting my groin real bad.....still hurts arghhhh lol grrrrrrrrr arghhhhhh etc etc lol Glad I have my family geeing me up...telling me you can do it ..Thank heaven for families xx (in my case ) Okay rant over until I get back from dietician who will tell me I am fat..lol..I want news not history... My song Mrs 5 x 5 she's 5 feet tall and 5 feet wide .... Love to All WinB143 xxx Edited May 2, 2012 by Winb143 Quote Link to comment Share on other sites More sharing options...
kpaggett Posted May 1, 2012 Share Posted May 1, 2012 Hi you two, I'm in the states so it might have been a little different for me. Although, I read the article and thought...here we get aftercare, but it is more suggested and not mandated. AND, it seemed like everyone was treating me like what would happen after a clot and no blood spilling on the surface. It does damage in an entirely different way and thus rehab expectations and recommendations should be different. My PT/OT never warned me that I could so easily pull stuff in addition to being weak. They just wanted to focus and building muscles. I already had plenty of muscle for my lifestyle, but the connections to the muscle from the nerve was what was interrupted and weird! Then there is insurance here. When I bought it like a good citizen, I never even guessed that I might need OT/Speech therapy. I was prepared for a broken leg or cancer. Well, I had a SAH instead and I was completely under-insured as they say here. I also didn't relate to my in-network neuropsychologist and have to go out of network which means I have to pay the first $10,000 of treatment...so they basically aren't going to pay at all. AND even the medical professionals seemed to think neruopsychological treatment was only going to be limited to neuro-testing. What about adjustment? For some reason that's still frowned upon even by medical types that should know better. I hope administrators read and learn the easy way (unlike us...) ~KrisP Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted May 1, 2012 Share Posted May 1, 2012 (edited) Penny, I saw the highlight on the news this morning & felt quite excited but having seen a few clips of it throughout the day I'm deflated again. It seemed to be aimed more at physical problems and not really cognitive issues? I do understand that physical problems are incredibly debilitating but strongly think the cognitive & emotional adjustment is too. So sad to see people interviewed and break down at the lack of after care they have received and their hopelessness at the thought of their future. Stroke/SAH is not new, how can the after care be so sadly lacking still? Thank you for highlighting the link. Michelle x Edited May 1, 2012 by goldfish.girl Quote Link to comment Share on other sites More sharing options...
Macca Posted May 2, 2012 Share Posted May 2, 2012 Hello all, sadly this is all too common - amongst the disabled, stroke sufferers, forces coming back from wars, the elderly etc. Everything seems to be about cash andd there's never enough to go round. That's why this group is so good - it costs little and yet adds so much to our lives, making it richer and a more cohesive place to live. However the lack of professional help when you need it can be alarming and when it is available it can be difficult to get hold of, depending on where you llive. I know I am lucky, but the treatment I have had so far has been nothing short of superb, but as time goes on the help gets less. I suppose everyone has to be specific about what their needs are and everyone's are different. I suppose there lies the problem to produce a one size fits all after care system. I hope something can be done. Best wishes Macca Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 2, 2012 Share Posted May 2, 2012 I agree with all what has been said....I count myself lucky that my family were behind me and my brain blocked out the first year or so Some people were helpful the others not !! and it's the later that got to my hubby....he didn't trust Carers/ Nurses to keep me clean.... So it meant both Him and Daughter...doing it in shifts up hospital...... The OT's gave up on me (swear words..lol) but the surgeon never.... Family never Thanks Family and Surgeon xx !! Love to All on BTG xxxxxxxxxxxxxxxx WinB143 Quote Link to comment Share on other sites More sharing options...
MaryB Posted May 2, 2012 Share Posted May 2, 2012 I believe we should write a book about "What to expect after your SAH or Stroke" (in my case both and jelly bean brain tumor....) I am serious. We could be rich, and meet up and have a party & do all the morning talk shows andmeet Dr, OZ, Oprah, etc........If we had 10 of us there / alternating people at least 3 would be having enough brain cells to speak. Really or did you guys see that movie "Young at Heart"? We can do a documentry (SP) and film our daily stuggles, the ups and downs, lack of information etc..... MaryB Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 3, 2012 Share Posted May 3, 2012 (edited) The Show would start like this...Macca walks on and talks about BTG, applause from audience ....Win n Mary go green..lol Hello, good evening and welcome (taking off David Frost) forgetting lines Win passes over to Mary...... Mary.....ermmm thanks Win !.....looks at autocue lol .... Mary have you forgotten lines says GG ...We start to laff but Sandi n Karen put sensible heads on....and now a song...(Me please says Kel) ..Sl says well I am better...okay okay no fighting puleeezeeee says director David lol Kris starts to recite poems...applause !! ...Win sings...Boo's start....Win swears at audience.....Mary holds head in hands No ! No ! The whole of BTG get on stage singing and dancing.....and all goes well in the end !! We speak about our pops in head...without swearing !! and we are a hit ..hooray okay enough day dreaming Notice how I put myself in show...lol Love to all WinB143 xxxx Edited May 3, 2012 by Winb143 Quote Link to comment Share on other sites More sharing options...
KelBel Posted May 3, 2012 Share Posted May 3, 2012 Penny - thanks for sharing that link, I have shared on Facebook too. Win - you do make me laugh! :lol: :lol: :lol: Quote Link to comment Share on other sites More sharing options...
MaryB Posted May 3, 2012 Share Posted May 3, 2012 Win, You may be right but I thnk a couple of us would shine in our hour to speak about life aftter SAH. You woudl be right I do hold my head in my hands when I am overloaded. We all woudl be startign a thought and never finsihing it,. That is why a film "A day in The LIfe Of SAH Patients" would have to be done first so we can focus after they watch bits and pieces of it. Kel BEl usually has it together... SHe woudl speak for me. I would just be another pretty face in the background. Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted May 3, 2012 Share Posted May 3, 2012 Win, I can picture the scene through my tears of laughter Sandi & Karen, the sensible ones, yep, they'll be trying hard to make the rest of us behave ourselves! Michelle xx Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 3, 2012 Share Posted May 3, 2012 (edited) Hello Audience My name is hmmm Win...and I had a thingy approx ...ermm Well I had a thing in my head a few years back .. Meet the others(passing the buck) there's thingy who I met on BTG....and whatshis name..oh and you must meet thingymebob... Cut says David.!! .....what did I do wrong David ?? its GG's fault..she makes me laugh and Mary as she keep holding head look David ! points to Michelle and Mary as keeping in Davids good books (he's director) lol.. Got to stop laughing so much....Thanks All for being good for me..so much laughter is great....said seriously xxxx Love ya all GG Kel Mary Sandi Sl Louise Sarah Penny Kris Macca ermmm anymore? I forget so easily..lol I can see my name in lights BTG starring Win ermm Thingy.... WinB143 xxxxxxxxxx Do luv ya company xx Edited May 3, 2012 by Winb143 Quote Link to comment Share on other sites More sharing options...
Super Mario Posted May 3, 2012 Author Share Posted May 3, 2012 :lol::lol: Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 3, 2012 Share Posted May 3, 2012 in cognito as I am a STAR lol Quote Link to comment Share on other sites More sharing options...
Sandi K Posted May 4, 2012 Share Posted May 4, 2012 I love it! Sensible?! I'm going back to that party in the green room. Sandi K. Xoxoxox Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 4, 2012 Share Posted May 4, 2012 Wait for me Sandi ..runs after Sandi but she is a star and her minders hold me back..lol Okay back to real world Laters All WinB143 xxxxxx Quote Link to comment Share on other sites More sharing options...
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