Newish to the forum ! oooops posted this in the wrong place orginally!


#1
Hello to all,
Have been around the forum for a number of years, decided to jump into the forum instead of just dipping my toes in it !!

My Full spec..........

DX 13 years ago when i was 30
Age now 43
Age when DBS fitted 38

Had most pill combo's but eventually sent me dyskinetic so in Feb 2007 had a
Deep Brain Stimulater put in down at UCL in London under the PD SURG trials.
The DBS took some time to get the settings right, but now i couldn't be without it, occasionally i turn the DBS off to see what the UnDBS'ed me is like, know that is sobering, after 2/3 minutes im a wreck, it makes me really appriciate it.
Still taking some pills but nothing like the 30/40 a day i used to take pre-DBS.
Just trying to cut back on my Neupro patch and my sinemet intake. I've been badly overdosing on the sinemet causing me to be impulsive,reckless, hypersexual, anxious, paranoid etc.........

Anyway thats where im up to, what about you.................???!!!

#2
must be extraordinary to be able to turn on and off a device in your brain! where is the switch (if thats not being too nosey)? does it feel different to taking l-dopa or much the same?

#3
The impulse generator / battery pack is placed under the skin in the top of my chest. My friends thought they be able to turn me off, like the TV !!!
You get a hand held controller that has to be placed over it to turn it off or on. The dbs just raises the bar of the 'offs', i can still feel when the sinemet is gone but the dbs lessons the height you fall to !

#4
Hi Titania

Welcome .... hope you find using the forum supportive and helpful.

Was wondering if you think the sinemet is causing/exacerbating your ocd etc the reason i ask is my o/h who recently had PEGJ inserted to deliver Duadopa and now is on Sinemet overnight has started exhibiting odd/icd behaviours again . I am at the end of my tether as although i realise that PD in its own right can cause these behaviours was hoping that the change from DA's to Levadopa would minimise this ?!!!!!

#5
hi welcome to the forum,im ali,im also 43,i was dx 11 half years ago.few months back i was spokern about havin dbs from a neuro at queen liz brummy,but i said i would think bout it.isaw the documentry on the operation and personally it put the wind up me,the drillin bit etc,like alot of people i guess.i not few people who have gone ahead and had it done,and they said it best thing they went through ,one lady at me pd group had it done couple month back,and its not worked good for her though ,she is bein pushed about in a wheelchair still,and her speech is not good at all.i spose it works for some and not for others,im still in the land of thinkin bout it,i see me neuro agin in june,and i shall have another chat about it.i wish you luck and its brill everything has worked out well for you.there lot of surport here on puk forum,and nice people to make freinds with ,i hope to see more of you about.take care x ali x:smile:

#6
Ali
it must be a terribly difficult decision, and only you know what is best for you, and it is definitely not for me to try and persuade you for DBS or against, but I hope you manage to exclude the understandable fear of the operation from your decision making - its too important to let that be decisive.
best wishes
T

#7
ali j

For me the DBS has been fantastic and the operation done under local anaesthetic, was perversely enjoyable, I just embraced it, the skull rattling when they drill is a bit strange or when the surgeon had just finished drilling and then said 'oh shit' mildly worrying when they've just exposed your brain, he'd only dropped one of the electrodes on the floor though, thankfully !!! Maybe try and get an appointment at UCL the neurosurgeon Mr. Hariz is a character and bloody good at his job, i can thoroughly recommend the team down there, they are a very caring bunch.
If you do decide to go for it, don't set your heights too high, better a pleasant surprise than a horrible shock !

#8
Bubble
As well as the sinemet I was on a 6mg neupro rotgatine patch also, which i think maybe the problem in terms of OCD / ICD. I've just been 1 week without the patch, feeling a bit crappy but we'll get there.
Regards