I'm not posting this to start a debate about the merits of Deep Brain Stimulation (DBS), but I do hope we all keep Benjamin Stecher in our thoughts as he is about to undergo DBS. Benjamin was diagnosed with Parkinson’s Disease approximately eight years ago, at the age of 29. Since then, he has been a tireless advocate for PwP and has become an extremely knowledgeable patient at the same time. Here are his thoughts...
Benjamin Stecher About To Undergo DBS - Cure Parkinson's
He's a brave man!
Very impressive young man, hope he gets the best possible outcome of this surgery, however I am curious why didn't he go for the FUS procedure?
He appears to be still in his 30s (maybe late 30s?). FUS may be seen by some as a riskier proposition (all things considered) when you hopefully have a long time left to live.
nitpick - DBS stands for Deep Brain Stimulation
Geez, maybe dementia is setting in. Thanks for the correction. I knew that, but didn't write it. 😊
Jim, Thank you so much for this posting. I also listened to the group of people that have had DBS and their experiences. As someone that is on her 3 testing visit to see if I’m approved for DBS it was comforting to here their stories. Mostly positive but with some challenges. As of late, I have been focusing on the bad stories and stressing and making myself scared. Trying to stay in the moment. I’m a tough women and I don’t take no for an answer and I know I have the final say but I don’t want to look back and regret not doing something when I had the opportunity to give me a better quality of life. This posting made me feel more positive about the whole process. I appreciate you and your willingness to post information for everyone to be educated. Karen ❤️
Karen, on Facebook there is a DBS group you might be interested in. I’m not in the group and I don’t recall the name (I’m not being very helpful here) but I did see a DBS specific group and in the young onset FB groups DBS is much more common than on here. And, it’s almost entirely positive. If you get diagnosed in your 30’s or even 40’s and have to work, and have kids, you have to have DBS. You don’t get the luxury of being scared.
I will hold off as long as I reasonably can but I’ve assumed it’s in my future. I’m assuming approx. 10 years from now I will be doing exactly what you are doing now.
As I typed that, my pinky just gave a big tremor in agreement.
Cc, Thank you for the information. Unfortunately, I choose not to be on FB 😊. Yes I was 49 when diagnosed and worked with PD for 8 years, (thought I had it figured out) but PD was stronger. I do believe you have to be on meds or at least tried them for around 3-5 years and having issues with them to be a possible candidate for DBS. I have an appointment next week with the neurosurgeon. We will see. Karen ❤️
Thank you so much for letting us know about Benjamin's surgery and posting the link to his thoughts. What an articulate young man, and what a brave person. Wishing Benjamin all the best with his surgery, recovery, and improvement of his symptoms.
I hope it goes well for him.
One of the comments on his site was why he didn't consider Neurofeedback. I have never heard of that and I am going to do a little searching.
Wishing him the very best possible outcome.
I wish him that it does well and bring him the rebirth of the Ouroborus.
Personally, I would never put my brain under a device like the DBS one that we still don't know exactly how it works.
But to each his own choice.
jimcaster aDBS not just DBS. I think the title is confusing.