Ive had enuf fighting this fucking horrible diesese
every day i push on and on its getting to hard now
every day i deal with the disabilitys that remind me its still there i get so frustrated with things not working prperly ive done it for a year and im so tired of fighting its too easy to say keep fighting, unless you have been in this position you do not know how hard it is
sorry for being so down everyone but i had to blurt that out

 

Dare I ask what it is ?
I have a displaced frontal lobe as well as other brain damage, docrots tell me I could drop dead at any moment, don't waste your time thinking about it, take your life back.
tabetha

 

i have cancer of the brain its in the temopral lobe on the right so my left side is almost dead

 

My wife had a stroke at 26 she then had another at 27 she now has a form of epilepsy where she only fits when she sleeps,a binine brain tumor, possible cancer of the limph clands she is also being checked for breast cancer and now we find a lump in her calf.as well still having resricted use of her left hand side.she is only 31, All you can do is just remember you are not alone and there is always some one suffering more,you need to look at the possitive thinge in your life such as children if you have any as every minuite with them is a precious memory the will tresure for the rest of their lives.we have 3 and it is hard for them and us.we wish you all the best and we do understand.ian

 

yes i understand thankyou . im only 30 was diagnosed at 29 i also have seizures as you will know any abnormality in the brain can cause fits i guess your wife takes phenytoin sodium to try and control them as i do

 

She takes
clonazepam 0.5mg tabs x6 a night for the epilepsy
Co-codomol 30/500mg tabs x2 3 times a day
Dosulepin 75mg tabs x2 a night to help her sleep cus the combination of the others keep her awake.
zydol 50mg caps x2 3 times a day
also other tablets that im not sure what they do she has so many i cant keep track
Never got to worry bout her getting lost you can here her rattle a mle away
just hope we dont get raided by the police theyd think we were drug dealers or somthing

 

Sorry to hear this, dont really know what to say in situations like this, so all im going to say is my thoughts go out to you all.

 

There is nothing you or anyone can say but we must all remember how fortunate we are not to be suffering our selfs,but thank you

 

So how you doing biglee?

 

im ok just had another seizure last week really knocked me out for a few days. going to see the epilepsy consultant soon maybe get ome more tabs to knock it on the head completely.

Lee

 

did you book your hoilday?? sorry to see how you feeling

 

Hi Lee,

I think one thing you need to remember is what an inspiration you are to so many people on here and around you - even if they do not tell you to your face! They will remember you not for the cancer, but for the courage you have shown in telling it to go fuck itself whilst you can!

My biggest inspirations in life are my brothers (one of which is sadly not with us (Died age 10 just before xmas 05)). They both have a rare genetic condition which will kill them, and are severly mentally and physically handicapped and as such, there only attitude is if it feels good - just do it! Oliver (My Dead Brother) Had sanfillipo - the condition they all said would kill him, which takes them off there feet age 10-12, Charcot Marie Tooth (A condition which wastes away the muscles due to nerve damage - completely unrelated to the sanfillipo. He had to have surgery relating to the CMT due to toe walking at age 7 (I have the same condition) and the doctors said he would never walk again, as the sanfillippo would stop him from adapting to having a heel on the floor! Well 2 days after major foot reconstruction surgery, where they lengthened numerous tendons which causes a massive amount of pain (had it done myself, was in a wheelchair for 2 weeks cos of it) he was up and running around on the casts smashing the base in as the doctors/nurses werent prepared for this! Nobody had told Oliver he wouldnt walk again! In the end it was not the terminal sanfillippo that killed him, it was SUDEP (Sudden Unexplained Death in Epilepsy)

Now I dont for one second pretend to know what you are going through, and feeling like you are an inspiration to people will not make your day to day life any easier - however this grit and fight is setting up the legacy of biglee!

 

Sorry to here that and good luck at the docs.what might help is if you try and see if you have any signs of a fit coming on like a funny smell or a taste or even a strange feeling it helps cus you can prepare yourself,its got to the stage that i can tell when my wife is going to have 1 just by the look on her face and there are sings u just need to look out for them also try and see if there is anything that you do that starts them off and then you know to try and avoid it. As with the docs there is no tablet that will stop them it just reduces the risk of having 1 they might try you on several types b4 they find the medication that works best for you so good luck

 

Do you have kids?

 

hold in there brother my thoughts are with you.