An Interview with People Living with Deep Brain Stimulation for Parkinson’s (6+ Years)

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In this video, people with Parkinson’s who have been living with DBS (Deep Brain Stimulation) for 6 years or more discuss why they chose to get DBS, the approval and surgical process, and their top tips for anyone considering getting deep brain stimulation.
Learn more about DBS here: davisphinneyfoundation.org/?s...
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0:00 - Introduction
4:51 - First Line of Treatment When Initially Diagnosed with Parkinson’s
26:53 - Deciding on the Type of DBS Device
32:48 - The Process Between Considering DBS and Getting Approval
44:30 - The Importance of the Surgeon/Programmer
56:15 - Being Fully Awake or Asleep for the Procedure
1:01:35 - What Are You Most Grateful for or What Were You Most Surprised By?

[@larrysimpson6087]

I had the DBS initial surgery on 1/18/23, and that was for both sides. The second surgery to hook up the battery was 2/1/23. My initial programming was 2/20/23. My next programming was 3/7/23. My next programming will be 5/9/23. My thought to anyone considering this procedure is to have your expectations around the time from implantation to programming to completion or major change to be around a year, or so. The hardest thing for me is that most people I know expect that I had this done now I am all better!! It is working, and I am changing, however I now realize that it takes time and to simply be patient and continue to work with my team.

[@sorenberger]

29:09 😊

[@jjcabrera2344]

Hi everybody I am scheduled for DBS on Octobef 16,2023 and woud like to talk to somebody who already had DBS implanted to help me become more informed and ease my fear of the unknown.Thank you kindly.

[@jerardmajjalo6594]

@@jjcabrera2344u

[@paulostrander788]

Can you update?

[@larrysimpson6087]

@@paulostrander788 It took time for me to adjust. I continue to learn, and the parkinsons continues to advance. Tremors are much better controlled. Less meds than I was on and MUCH better sleep. I would do it again in a heartbeat!!

[@FlaschDJ]

Excellent leader/interviewer

[@sharonmaplethorpe9168]

Really useful information as always -thank you everyone for sharing your stories❤

[@splashesin8]

Again, very interesting and helpful stuff to know. Thank you. 😊

[@berniehelbling2891]

I had DBS surgery done January 15 2o24-.After a nightmare experience of surgery I was having no positive micro lesion effects at all. After some healing they started programming. The online appointment didn’t work very good.(maybe because of bad internet) so I still have to travel-flight. I still wait for some positive results. Ap to now it was not worth. I still have some hope.- Your videos have been the reason for me to get it done. Unfortunately it seems not to work for me. I’m born1957 and diagnosed in 2013. Taking 19 pills every day!

[@davisphinneyfdn]

Thanks for sharing your story. We're sorry to hear you haven't found benefits from DBS yet. That said, while the majority of people have a positive effect from DBS, not everyone has positive results from DBS--especially not immediately. Sometimes, it can take months to establish effective programming. It is also possible for the DBS leads to be placed ineffectively and for there to be additional surgery required to get positive effects. It's pretty rare, but some people don't ever experience significant positive effects from DBS. It is possible that imaging at your in-person visit might provide perspective on the placement of the leads and help improve your programming parameters. You might also benefit from seeking an alternative perspective from another programmer. Contacting a representative from your DBS device manufacturer might help facilitate this. Also--we recently published a post about DBS recovery that might be helpful to provide perspective: davisphinneyfoundation.org/dbs-recovery/

[@cherylginsburg-smith3375]

So please explain to me what what could not be successful… what are the downfalls that may be ?

[@davisphinneyfdn]

Some possible complications of DBS are discussed in this video: kzbin.info/www/bejne/iaiXd4F7j8d-ndU You can find other DBS resources on our site here: davisphinneyfoundation.org/category/deep-brain-stimulation/

[@christophercantrell1831]

One of the downfalls is infection after the operation. My head was shaved to minimize this.

[@cherylginsburg-smith3375]

What about the battery pack installation… No one ever talks about that… How does it feel your skin and can you see it?

[@davisphinneyfdn]

Battery details vary depending on what specific device you will have. You might benefit from connecting with the online DBS support group run by one of our Ambassadors. They meet on the 4th Thursday of the month and you can learn more about the group by emailing [e-mail]

[@christophercantrell1831]

Yes you can see it if I take my shirt off. I can feel it along with the wires that connect to the control/battery pack. It's about the same size as a pacemaker. Small price to pay for the improvement in my life. Best of luck to you.

[@mikeodee1164]

i have meige syndrome i would never get dbs i take alpha lipoic acid and magnesium for the past 2 years and the meige syndrome is alot better im able to function so far i had meige for 9 years i hope it never gets very bad i also have blephorspasm and the pills i take are helped me more then botox helps many others im lucky my symptoms are not as severe as others

[@davisphinneyfdn]

Thanks for your comment. We're glad to hear you've made progress managing your symptoms.

[@berniehelbling2891]

Davis,Kevin did you have speaking problems before DBS?

[@davisphinneyfdn]

That DBS can influence speech is well-documented. One challenge is that some people don't initially experience speech changes after DBS, but develop issues later. In situations like this, it can be difficult to assess whether the speech changes are caused by DBS or the progression of Parkinson's. This is a risk that is important to discuss with your care team if you are considering DBS. Lead placement and type of DBS system you use can influence the risk of developing a negative outcome with regard to speech.

[@berniehelbling2891]

Thanks,appreciate it.

[@cherylginsburg-smith3375]

Or any of you alone and single when you had this done…? How are you able to take care of yourself or did you have somebody care of you

[@davisphinneyfdn]

One part of the conversation about whether you are a good candidate for DBS will be your support network. You might consider reaching out to one of our DBS Ambassadors. You can find a list of them here: davisphinneyfoundation.org/ambassador-search/?topic=2161

[@outihaggqvist5703]

​@@davisphinneyfdn😅

[@outihaggqvist5703]

Abba

[@outihaggqvist5703]

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