My wife has had PD for 24 years now, diagnosed at 36, and generally, when the meds work she is pretty good. But her off periods are devastating and her mobility is almost non existent. Has anybody has DBS or have knowledge of anyone who has had it? She is really considering it now, and wants to know the pros and cons, and if it helps with the off periods.
I have had PD for 10 years and had DBs in November for same reason.
Hi Ed, has it helped in that matter at all please.The off periods are a major concern as meds in PD are so unpredictable.
I can only tell you about my experience so far which I just under 4 months long. My on’s and off’s were very extreme, from being unable to get out of bed and unable to walk and being vey stiff when off, to running marathons when on. I understand that the better you respond to medication the more successful the DBS will be. Following the DBS I have a much more level baseline where the stiffness has gone. and I can get out of bed straight away and shave in the morning, That levelling out is not as high as the best “on” from medication but that is where the medication comes in to work from that already elevated point (albeit about half what I was taking before DBS). Its scary but worth it in my view. Good luck
Hi martygee56,
My wife has has PD for 20 years and had DBS since around 2014 which was done at Addenbrooks in Cambridge. She says its been a god send but even though her legs are giving up on her because of the stiffness and freezing she does not regret it at all. Everybody has different experiences of DBS so the only person who can decide is your good self. But by all accounts there is definitely more good than bad about it.
Good luck to you
Thank you. We are definitely leaning towards it now and will have to have discussions with pd nurse and specialist.
Thank you. Think its getting to the stage now that it has to be considered.
I’ve had dbs for 9years, I also got Parkinson’s at 36 if I didn’t have dbs I don’t think I would want to carry on ,my balance, walking every day life is manageable now,it’s not like Magic you have to find the right balance medication & dbs settings it took me about 15 months, it can be alot back and forth to hospital to get settings right but there good as gold .I had mine done in Bristol I would phone my dbs movement nurse say on the Monday and would have a appointment no longer than a week. Your know when you want dbs trust me.
Thank you Gus. My wife Denise, is really considering it now, but it is a major operation, so that is a worry for her, for us both, but her quality of life is suffering now. Someone we know had it done about 6 months ago, but wanted a few opinions before we meet up with him to see how it went with him. He had it done in Bristol as well, so that would probably be Denise’s hospital if she went for it.
Thanks again, Martin.
Hi yes Bristol is one of the best as you are a sleep for the whole operation takes 5 t 6 hours .And you don’t feel a thing and all the dbs team are great, but you have to make the criteria first good luck.
Do you know what the criteria for DBS at Bristol are?
Hi martygee56, I had dbs in St Georges Tooting in 2017 after going through stiffness, freezing & shaking like a jelly. I’d been offered dbs in the past I fitted the right criteria as I was young enough & fit enough and after going through a few tests for memory & what I was like when I didn’t take my my meds I was given the okay. All I wanted was a life again. I’m not going to lie the thought of a drill going into my skull scared the crap out of me but to be stuck indoors not knowing whether I’d ever be able to go out again made my decision to have dbs a no brainer (no pun intended). In St. George’s you’re awake for the first part & under general anaesthetic for the device fitting ( it’s like a pacemaker) the only painfull bit was the fitting of the halo which was down to time as they gave me a choice of having it done over 2 days because of theatre slots as an emergency case was put in front of me but I said I just wanted over and done with. All together I was in for 3 nights and switched on before I left. My meds have been cut by half & I have a life again but do have the occasional bad day but the device can be tweaked to sort that. Oh yeah I was diagnosed with PD in 2010. Hope this helps?
Hi your post was nice to see ,you saying that Bristol was one of the best for DBS I’ve had pd for 11 yrs I’m 54 and being seen at the ruh bath but was referred to Bristol I’ve seen two or three of the doctors before seeing the main man and now i am on the waiting list for assessment to see if i meet all of the criteria so far they seem to think that I would be .of course all of this depends on this pandemic when it is contained i was asked by the website if i wanted to revive this topic as it was10mths ago it would be nice to find out more about the process from the receiving party with their views rather the the doctors view of the process if you do not wish to revive or answer this old conversation then will understand and respect your decision many thanks and all the best for the future
That’s great news things are happening, Dr Alan whone is top dog.good luck
Hi yes he is a very polite and nice man and is interested in what you say he didn’t just go through everything as if it was old hat , he listened to my point of view and told me what’s what straight to the point no messing
He’s the man & professor Gill done two TV programmes on gdnf
There was a really good webinar about Deep Brain Stimultion (DBS).on Sunday Mornings with Twitchy Women: DBS January 10, 2021. I found it very informative with women who have had DBS. Here’s the Youtube link https://www.youtube.com/watch?v=DZR8Uv5VjZo
Thank you i will look at it
Gus just to let you know ive just had my DBS op on friday and hope to be activated on the 24 aug 21 i was in for two nights as you satd its a long operation i went down about 830 in the recovery room 1600 and on the wards 1800 my surgeon was ms Reiko Ashida
she was absolutly brilliant as all the staff at southmeads bristol
That’s brilliant now you can start getting your life back on track, don’t expect a miracle & don’t give takes bit of time to get your meds & dbs settings to what your happy with. Great news 