New to this.. DBS Stories? Please share!


#1

Hello everyone, my name is Becky and I'm 23 years old. My dad who is 48 has Parkinson's disease and has had It since the age of 40. He is looking to have deep brain stimulation surgery. The hospital have said he is suitable to have it and they will arrange for him to meet someone who has had the surgery. Ovbiously it's a very scary procedure not only for my dad but for me,mom and sisters too. I was just looking to see if anyone has had this surgery and would be willing to share their experience. I understand Parkinson's affects people differently so it could be different. My dad has Parkinson's on the right side of his body and one of his main symptoms is shaking. Many thanks in advance and would really love it if you guys could share your stories with me I'm really scared!! X 


#2
hi there I live in weymouth Dorset had dbs 3yrs ago at Frenchay which is moved to southmead it's the best thing I ever done no more shaking or tremors it takes a while to get the best results from it ie right settings amount of meds there's no pain if you want to chat private message me and I will give you my number too much to write

#3

Hi sweetheart,

I understand your scared but It is successful as I understand from Gus this Website will have a link where it will provide you with the info from a more medical point of view. And do private message Gus he will try to help you as he has me and several others on the forum just because that is what we do. We are here all in similar positions and try to support each other and even council each other to a degree, I'm guessing as you use the term mom where in the uk we would use mum that you are in the USA. Your very own MJ Fox website is also very good source of info I am on a clinical trial that I would not have found without his website.

I hope you find the info and help you seek and I hope your dad get's his DBS without having to wait around like we can do here with our NHS.If you want to talk more and you want a female perspective I am only a year older than your dad and was dx in June 2013 age 47 stage 2 now at stage 2.5 i promise I will help in any way I can.

Kindest Regards BB x


#4

Hi Becky

What is the current medication regime your dad is on ie what pills does he take what dosage and when?

L


#5

Hi Gus, sorry for the delay in getting back to you. Thank you for the reply. Yes please if you could inbox me your number and I can pass to my dad to give you a call if that would be ok? Thanks! 


#6

Hi BettyBlue, thank you for your reply :) I'm actually from the uk I've just always said mom lol, might be different areas, not sure :) but that's good. Thank you for your reply and I will have a look around the website and see what info I can find. Xx


#7

Hi Leyther, I'm not too sure, I will ask him and get back to you. All I know is his medication is not really helping his shaking and they have been looking at different meds for him. Thank you for your reply. 


#8

Hi Becky, Let me say that DBS was one of the best decisions I ever made. Rather than try to post my whole story here, I'll link to the forum where I posted my whole journey into and through the DBS process:

http://forum.parkinson.org/index.php?/topic/17269-dbs-just-got-real/

and

http://forum.parkinson.org/index.php?/17798-dbs-update/page-1

and my dear friend Kim's page about her DBS experience:

http://forum.parkinson.org/index.php?/15191-4-year-dbs-follow-up/

I hope my experiences with DBS can help you and others........

 Yes, on the other forum, I've changed my user name to "FlyBaby", as I own an airplane of the same name.... that I am currently re-building/restoring.

 

 


#9

Crap, here's the proper links for the two broken ones above.......

http://forum.parkinson.org/index.php?/topic/17798-dbs-update/page-1

and

http://forum.parkinson.org/index.php?/topic/15191-4-year-dbs-follow-up/

Silly me, I forgot to include the word "topic" when I wrote out the original links.........


#10

hi ab

        going in for my first battery change lasted 3yrs ,3.80v l/side  2.60v r/side  been feeling abit slugage since battery started to reduce do you no anyone who has had battery change .gus dbs 2.53v  and falling !


#11

Hi Gus;

I'm at 1.8v L/side & 2.3v R/side, with my battery at 3.0v right now....... So it'll be some time before I have to worry about a new battery...... Now my friend Kim (4 year DBS follow up thread link above), had her surgery in 2009, and is currently at 1.1v Left & 1.4v Right, with her batt. at 2.93v, and she figures that she'll need a new batt next year. That will be year 7 for her..........

Thus, I'm now thinking that she lasted 7 years at her settings, and you lasted 3 at yours...... I should get at least 5 years from mine....... LOL Although I don't know where you you started, or how your settings have changed.......

Any idea when they will schedule you for your new battery???? Oh, another question, Who made your DBS system?? Mine is from a company called Medtronics.

Michael


#12

same medtronics 26th may 3 weeks time bristol


#13

sorry neck killing about 2.5v average each side , by the way do you know if acupuncture on neck is allowed dbs  


#14

I don't know, but don't think I'd try it there..... too many wires.....too much chance of poking a wire...


#15
You can only but ask three weeks to go. new generator

#16

Good morning,

Apart from going through the op etc., can anyone please tell me how they feel about living with wires in their head and a battery under the skin?

 

Thanks

Casie


#17

at first battery bit uncomfortable in bed ,but it doesn't take long to get used to it,as for wires no problem i shave my head take no notice of them