Yes you are all right although I agree i should have stated i was on in video at the end of the day I agreed to be be filmed so people can learn and we must accept ourselves that with this condition we will always be learning ourselves.
I really appreciate your best wishes and good thoughts I will also add by now without this forum and PUK this b**** of a condition would have caused me to crack up by now.
All the time I have breath in my body I will fight our b**** and hope all you can too.
Well bb start safinamide tomorrow this will replace azilect hopefully less sinemet and less entacphone and less dyskinesa and distonia will keep you updated. Tried to private message but your not accepting
Well my phone call about two weeks ago to my neuro surgeons sec has had the desired effect. I explained as I have no commitments I can make myself available with 24hrs notice if a cancellation comes in with regards to the 3 days assessment Levadopa challenge today I get a call to tell me i have an appointment next Wednesday the 24th to travel to London so I can have the required psychological test on the following day Thursday at 9am my MRI will take place the same day at 5.30 at the same hospital and on the Friday the 26th I will have the dreaded Levadopa challenge. So thats all been confirmed next Wed Thur Fri the ball is well and truly rolling. I will update to let you know how I get on.
BB xx
Fantastic news Karen. I'm only sorry I won't be able to come with you this time.......I've arranged to go with my sister to Goathland to sort out Dad's house and clear the contents, next week. I hope you won't be going alone though? What does the Levadopa challenge entail and do you have to go completely off meds. again? Keep us posted and all the very best. I shall miss our JD & C and YOU of course!
What you have described is exactly what I went through a couple of weeks ago and,at last, I've heard from the Neuro Administrator and I have an app with all professionals involved in 3 weeks time.
She didn't give a clue of how things went or what they will say when we meet..
I will tell you that the nurses and other staff ŵere so kind and helpful, they did look after me very well, whatever the outcome will be. Every time I needed to go on to another department they phoned for a porter and there he was, a few minutes later. He would then take me back to the main department except the.last visit which was for the MRI scan at 5:30 pm. Our car was parked outside where we were.
Must also tell you. At the corner of Queens Square with Great Ormond Street there is an ice-cream seller""""nice.
Hi twinks levadopa challenge is basically the same as I done with the trial completly off Meds so they can see how bad it is and establish exactly how and what symptoms the DBS can deal with. Can not say I am looking forward to this again but it is a means to an end and on this occasion I have insisted Colin comes with me. He feels he is surrounded by PD 24hrs per day and he has never seen me as bad as it can get so I have told him on this occasion he will litterely be swimming up to his neck in it as you know your self when the Distonia kicks in I will not be able to do anything for myself. If he can't handle it then we will have a major problem so we shall see I know what's coming. But I will get through this again and bounce back as always take care BB xx
Oh poor you, having to go through all that again. It was very painful to watch you suffering last time, but even worse for you. It is a means to an end though, like you say and should get you the DBS sooner. It might give Colin something to think about as well. He needs to understand how bad things can get when you're not on meds. Hopefully it will bring you closer together and help him realise how strong you are at dealing with this sh***y condition. Keep fighting gal and let us know how you get on. X
Thank god thats over and i cannot say that was the worst attack i have ever had but it was sufficient for the PSN to acknowledge my distonia is aggressive. Saying to me when you are on you really are on when off bang you go so quick and really off. The parting statment gives me a bit of hope as well which was when you have the DBS not if you will be like you are now on.
I feel the assessment went ok and again i am hopeful of a cancelation coming through I just want this done now. The Distonia at every attack takes a peice of me with her. I hate her so much I would kill her. The parkinsons I can handle the distonia is vile.
My initial reluctance at the idea of surgery has now gone just bring on the DBS as soon as possible now.
https://m.facebook.com/story.php?story_fbid=1273034079387851&id=10000043814167
My brother is doing a 10k charity run although organised by another charity Terry pays them an admin fee then he can donate to the charity of his choice which is simply because of me. Anyone whom wishes to donate its all through just giving.com go to facebook and type in Terry Doublard in the search box and it will link you to his page. Any amount we really appreciate a lot. This is not just for me its all of us dealing with this c*** everyday. BB xx
Just a short note to say I'm still hanging in there - just.- hope you are managing?
I have my "yes/no" meeting this Thursday so I'll let you and anyone else who is interested in DBS how I did!
In the run up to this momentous occasion I'm certainly getting many more anxiety\panic attacks but I hope this dies down when I know things one way or the other.
