I bet it's good oto be home. Take care.
Twinks thank you so much you are special lady not many would do what you have done for me that is why now you are my chosen sister. As for the running hell I really do know i have my knee is killing me. As i said at I reached you that was the first time I have ran in three years. But there was no way we was gonna miss that train home. I am very proud to call you my chosen sister. And as for the talking yup it was me but no one whom spends some time with me can then say they do not know me lol x I knew your post was going to be good this one has brought a lump to my throat actually I can't talk lol xx
Awwww thanks, but you did all the hard work. Sorry your knee hurts. Can't believe you're lost for words though :)!!!!!! xx
hi bb
if you do get accepted for dbs , i must warn you after a year of having dbs fitted you go in hospital as in patient and they take you off all meds and turn dbs off around 9pm right the way to the following morning to access how bad you have got and show it was worth money ,also they do this at the 5yr its not nice so my heart goes out to you ! due my 5yr in march 2017
Thanks Gus i appreciate you letting me know if this the case i will deal with it, don't get me wrong if there is a means to an end i will Handel it as the DBS can only improve things for me. I just want to get on in my life now without this Distonia trying to take me over so having to do that periodically.
This has definitely tested me as a person I am not one for self praise and gratification but I am actually quite proud of myself.
Best Wishes BB xx
BB, Twinks, I salute you both. XX
so you should be proud of yourself ! any news on dbs
DBS in hand at Queens square as I put my foot down and insisted on. Met lead researcher on thursday and had a chat so am expecting a appointment to be arrange hopefully fairly soon.
BB x
I'm with you BB. I have my initial appointment at The National next week. Maybe i'll see you there!
Take care for now
with very best wishes
Casie
You too Casie hope all goes well take care xx
thats great news bb
BB,
Any news on when your 'off state' video will be shared?
Keld
Hi a rough cut of my meeting with the research fellow has been draw up so far mike said he will let me know as soon as any of it is going to be launched so I promise I will update this post. As I understand it they will be releasing it in segments as he was filming me for near enough 10 hrs I was completely shattered at the end of it all but said I would do it as I am always saying people need to learn about condition like PD MS MND MD & ME and those of us whom are effected by these conditions we need to be transparent as until such time as we have a cure we do not know enough about any of them.
Hears hoping it comes within our lifetime.
BB x
Hello all my brothers and sisters in arms.
Well tomorrow i go to Queens Sq UCL in london to find out if they will be willing to do the DBS surgery i have been referred for. Here is hoping they say yes and also that they can do it this year. Never did i think before that this would be an option for me my thought process was there is more than enough going wrong in my brain so the thought of someone fiddling about in there msde me think no way you can get lost. But i so loath this ruddy distonia and its is getting me angry now which of course makes it worse. The Apo go injection that corrects it makes me nauseous and the pump for me is not gonna happen abersoutly no way. So thats it i will update you all tomorrow.
BB xx
Break a leg BB, hope you get the answer you so desire
Sheila xx
Hi Betty - Good luck, fingers, toes and eyes crossed for you!
Good luck lassie
ian xx
Hoping all goes wel for yu tomorrow
Porthos
Good luck for tomorrow BB......got all me bits crossed!!!!!!!!
Dolly x
Hi bb
Be thinking of you and hope all goes well. Let's hope it's a positive journey for you.
sue x