was that the video of when you were on the exenatide trial or the dbs testing?
You have been so brave BB in doing what you have done in the name of those with Parkinsons, and I for one am grateful for anything that will be found to be vital in the fight against this damn disease, and I hope I speak for all.
Well done and thank you Sheila
Hear hear Sheila!!
Thank you BB for your courage and strength in making folk aware. All the best to you,
sue
That was the trial video 6 weeks after stopping the trial drug at what they called wash out.
BB.
Thank you ladies I do not plan to stop in fact I have sent Steve Ford out chief executive a suggestion which will.i hope if agreed put this charity in the front of people's minds. I won't say what yet but will update this post when I hear back from Steve.
Take care both of you xx
All the best with that too then BB x
Another video with me as the lead subject think i am either famous or Imfamous now lol xx
Nothing horrible here fully with med's at time this was about 3 hrs after worst Distonia attack ever xx
I had my DBS operation in June 2014. I was diagnosed with PD in 2004 aged 49. I was put forward for the DBS operation in 2012 and after 18 months of tests etc i went ahead. Now 3 years later the side effects to my medication is gradually getting worse although my doseage of Stavelo has been reduced from 900mg to 375mg daily. The big question which I know cannot be answered but if i could do Groundhog day would be how would i be if i had not had the operation, . We have had to cancel holidays for time being . As you probably gather i'm a little chessed of at the moment as all the plans we had for post DBS have had to put on hold. This is the first time i've put a post on here, so apologises if i have gone on a bit. Interested in hearing other DBS stories.
I have nothing negative to say about DBS in fact for me this was best decision I ever made my meds have gone down dramatically from 20 per day to to 2 and between 2 and 10 Apo Go injections per day are now none. Without DBS by age 53 now 51 i know i would be bound to a wheelchair permanently and that for me is not a future i envisage. I could not be happier with this result.
BB xx
are you getting any off periods at all now . It sounds like it has been an out and out success for you. Long may it last. what about sleeping? As it is permanently turned on.
Sleep pattern normal know unit always on will need replacing in 5yrs so will be briefly switched of so they can assess how bad my pd had got. But replacement one is a 25year rechargeable takes about 30 mins you never let it to go flat though. My surgery has been so successful all including medical professionals can't see i have pd quite frankly i have me back and it has given me my life back. Is this something your considering roberto ??
yes, i have got the ball rolling and had my first interview and have bee accepted to attend the hospital for testsI
, just awaiting my letter. Also while i was there the nuerosurgeon asked if i would go on a trial for a new parkie drug which it is hoped to help to reduce off periods. So i agreed to give it a go.
Good for you if dbs is a goer which hospital will it be at and what is drug called?
long may it last !
Hello BB and everybody, really pleased to hear how well you are doing Bettb, it gives great encouragement to me. I have a date now for my op at Queens Square and both looking forward to it and a bit apprehensive as well, I'm sure we are all the same. I am happy to hear any more thoughts or advice to help me through. Continued best wishes for the future.
Hi so pleased to hear that you are going to my chosen hospital who is your neurologist ? And surgeon let me know I will be thinking about you xx
Hello again, I have been seen by Dr Limousin and Mr Zrinzo who I believe will be doing the op. Seeing as I will likely be in the hospital for several days, how did you find the ward and facilities, just another aspect that I worry about. Many thanks, Branwell
Found it all brilliant I was lady Ann Allerton ward and the whole team are fantastic Dr zirnzo is very calming and caring I can honestly say he has given me my life back.
If you want when chatting to them tell them you know Me Karen Missenden I can recommend them 100 percent.
Best wishes BB xx
that's just want I wanted to hear, very encouraging, many thanks BettyBlue. Branwell
Hi I wonder if you're having any benefit from the dbs yet? I had the op in December 2016 and haven't yet felt any change. It all seems very slow! Any one had similar experience?