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Posted: Thu Nov 17, 2011 2:50 am
Hi,my name is Christine (Chris) to my freinds,this is the first time I have posted on this site as a carer there never seems to be enough hours in the day as I am sure you will all understand.I have been looking after my husband for the last two years,he has gone from a fit healthy hard working man,to someone with a lot of health issues,due to a brain virus.It has been to say the least the most difficult time in both our lives,and we have encounted a lot of hurdles along the way.The day he became ill started like any other day (normal) and by lunch time we found our selves at the start of a VERY long journey with our lives turned upside down.We have had so many difficult days just trying to get doctors to listen to us and not just fob us off,form day one they (for some reasons only known to themselves)seem to have made their minds up that my husband had some kind of deppression that was causing his problems,and even told him that if he really wanted to he could get his self better,they did not seem intrested in what we tried to tell them,so we got passed from pillar to post,but they were not prepared to offer us any kind of help.After a year we went back once again to see our GP (who has been amazing) as we were getting desprate,he refered us to yet another doctor (who we had to wait a year to see) he was the only one who really seemed intrested in what we were saying,and gave us the diagnosies of a viral infection to my husbands brain,this has caused significant brain damage,we were devastated as this is not what we were expecting to hear,we had always belived he would make a full recovery and we could return to our lives the way they were.The doctor told us that my husband will not recover from this and will have to live with this for the rest of his life.I feel very angry about what has happend as I feel the doctors have alot to awnser for.
I would love to hear from anyone who is in a simlar situation as it really helps to talk.
Posted: Thu Nov 17, 2011 3:53 am
Hi Chris - welcome aboard!
My nearest experience to yours was trying to get a formal diagnosis for our son, whom we knew had autism. His was a classic case and it still took over 2 years to get the diagnosis: that was considered to be quick at the time!
Posted: Thu Nov 17, 2011 8:40 am
Welcometo the forum
I care for my hubby who has also gone from a fit and healthly workaholic to someone who is bed bound. His decline however has taken 10 years.
Theres lots of support on this forum and I'm sure it will be of help to you
Posted: Thu Nov 17, 2011 9:10 am
Hiya Chris and a warm welcome to the forum, plenty of support and advice to be found here.
Posted: Thu Nov 17, 2011 7:33 pm
Hi Chris, been there and done that too only my oh turned out to have an aggressive form of PPMS and has gone from ft and active to almost helpless, so some of us know just what you are going through and all of us have had similar experiences.
Posted: Fri Nov 18, 2011 6:42 am
Welcome to the forum
For my OH it took 10 years for a diagnosis, and only then after a referral to a different hospital from a very understanding GP
It is extremely frustrating, as I believe if the diagnosis was found earlier, measures could have been put in place and OH wouldn't be suffering like he is now.
I'm really glad I found this forum, it's a nice little escape for me with lovely people to talk to
Posted: Fri Nov 18, 2011 9:36 pm
Posted: Sun Nov 20, 2011 6:01 pm
Hello and welcome my favourite message/saying at the moment is "Everybody wants happiness nobody wants pain but you cant have a rainbow without a little rain".
Hope it helps
Posted: Sun Nov 20, 2011 9:04 pm
There is a lot of wierd viral stuff out there, such as Lyme disease, etc, and to be fair, doctors dont always get it right first time. Yes it is everyones worse nightmare to see their partner deteriorate like this and not know what to do of where to go for help. Anyway, you are in the right place now.
Posted: Sun Nov 20, 2011 9:27 pm
well thank god u found this site!
not alone now, welcome to the site!