Dbs

About Parkinson's and health Treatments and therapies
1
Is there anyone out there who has had DBS or is being assessed for it now. My husband has been approved for DBS and is now waiting for a knee replacement before he can have the DBS. I was wondering if anyone has had it and wants to share experiences or is thinking about it and wants also to share or if a person's partner wants to talk over the forumn or on the phone.
2
Hi Ribena,

I am an Aussie, and had DBS surgery just over 12 months ago. I am 50 and have been diagnosed since 41. A bit of history, well controlled using Madopar for a few years, introduced DAs (Permax, then Cabaser). Developed compulsive gambling problem (poker machines) which went on for two years, until it got to the point where I had to tell someone, or do the unthinkable. Fortunately, I was taken off DAs and things went back to normal after about 12 months. So, unable to take DAs, went on Stalevo to ward off "Off Time" and improve "On Time". Still working full time after 7 years diagnosis, however, symptoms becoming more noticeable and Off Time overtaking On Time. I was then taking 200 mg Stalevo, every 3 hours up to 4-5 times a day with a Sinemet CR at night, now working 1/2 days and early retirement looked like looming very quickly. I was only have an hour On in any 3 hour period. At my instigation started enquiring about DBS to prolong working ability. A large mortgage, 2 teenage children still at school at the time, meant early retirement wasn't an option. Turns out I was an ideal candidate for DBS, still fairly young and otherwise healthy. Had the surgery in August 2010 and haven't looked back. Not one regret and am back at work full time. Medication has been reduced to 50 mg Sinemet every 4 hours, 4 times a day! Sleep all night too! I tell anyone who is thinking about doing it or has any reservations about the surgery that in my case, it has changed my life for the next 10 years or so, and would do it again in a heartbeat. Any other specific questions, just ask.

Regards,

Andy
3
it was mentioned to me by my old neuro,but then soon declined when all the rest of my medical history came out,ive now got another neuro ,and i find her more sutible,she agrees with my old neuro on the no no for dbs for me,but as far as my pd and movement disorders are concerned she is great:smile:andyned i wish u all the best with ur futre ,u are a very lucky man ,count ur blessings:smile:and ribena i wish all the luck in the world for ur hubby with his knee op,and if he does go ahead with dbs in the futre,good luck to both of u ,x:smile:
4
that's very kind of you thanks so much and all the best to you too
ruth
5

Hi Andy

As it's been a while since you posted I'm not sure if you are still checking in. Keen to hear how you are going so many years down the track since you had the DBS. I'm 58 and diagnosed 3 yrs ago. My neuro thinks I'm an excellent candidate for early use of DBS so I am trying to get feedback from others in similar circumstances who have had it.

 

Thanks

 

6

Hi
you may find my DBS recovery blog of interest - www.dbsacompletenobrainer.co.uk. Also I have a number of Parkinson's/ DBS videos on my YouTube channel - www.youtube.com/ianfrizell.
Cheers,
Ian
 

 

7

Hiya self builder smileI found your blog and u tube,very interesting,I've not had dbs,to be truthful I'm scared silly of having it done,I've seen all sorts of videos on dbs,scared that's my only word I've got.I would like to add is who's gone through dbs,your so brave,and I wish you so much luck smile

8

Hi ali j

Thanks for your comment.  Nothing to be worried about regarding DBS - I had got to the point where I was scared about NOT having it!

Cheers,

Ian

9

Hiya self builder,I can see were your coming fromsmile