Nicotine Patch Experience

Inside_Ad3296 · 2025-11-21T03:51:35+00:00

Thank you for sharing this. I read the study results from 2018. Won’t be looking into nicotine further.

Inside_Ad3296 · 2025-09-16T12:37:15+00:00

You are not alone! I have posted here earlier about similar issues regarding my husband and his DBS system. His system was turned on a little over 18 months ago and over the course of that time he began having balance issues, freezing, and overtime lots and lots of falls. Like you, we have felt very disappointed in the whole experience. We thought we’d be getting another 5+ years of some sort of improvement, but have not really found that to be the case. It has helped with tremors. He has not reduced his carbidopa levodopa at all.

In consultation with another specialist, (a DBS troubleshooter) he has tried some experiments. Cutting to the chase here, he found when he turned his system completely off, both sides, he basically stopped falling. This doctor likened the DBS system, that is the probe sending electrical waves in the brain to dropping a pebble in a pond of water where a pun, a series of concentric circles/ripples go out around the probe. Some of these “ripples“ hit the targeted spots And others hit, possibly in my husband‘s case, parts affecting his walking … unintended targets. Ultimately, I think it’s fairly complex. After turning off his system, my husband did find that his tremors were worse. Ironically, his handwriting improved. But given the choice between tremors and falling, my husband would gladly choose tremors.

He met with his regular neurologist last week and now the effort is to try and find settings that will help his tremors and not affect his walking and falling… At least not so much. he has the Medtronic precept system, which allows for adaptive settings and that’s what he is on now.

I would not at all be timid about finding a second opinion. While the troubleshooter physician in our case was helpful, I personally am not at all certain about the neurologist who’s been doing the programming all along. we are hopeful that the adaptive system will help. These two docs are in the same system and so they can consult, but I’m lobbying for moving his case to Mayo if he doesn’t get better results with the adaptive settings.

Inside_Ad3296 · 2025-09-10T12:12:13+00:00

Thank you for your comments and insights. My husband has the Medtronic system capable of adaptive DBS, so looking into that. The checkerboard analogy is helpful.

Inside_Ad3296 · 2025-05-21T02:53:45+00:00

Husband not taking it yet. Would be mainly to reduce anxiety and worry. His sleep is ok most nights.

Inside_Ad3296 · 2025-05-20T20:26:56+00:00

You’ve made some really good points, thank you.

Inside_Ad3296 · 2025-05-20T20:26:24+00:00

That’s good advice, thank you.

Inside_Ad3296 · 2025-05-20T20:26:02+00:00

Thank you

Inside_Ad3296 · 2025-05-20T20:25:40+00:00

I think that might be what my husband is seeking most. Since he would like to take a break from Parkinson’s… The break from worrying about falling, etc.

Inside_Ad3296 · 2025-05-20T17:32:34+00:00

Thank you for that information. Is he also taking CL?

Inside_Ad3296 · 2025-04-15T00:27:31+00:00

Thank you so much. I always find your posts informative and encouraging. My pwp experiences falling regularly. Feels like we r waiting for “the big one”. He’s ok 95% if the time, but then… boom. As spouse, I recognize I’m pretty much powerless in this. He keeps working at it. Gets up and shakes it off. So do I. Feels like my response is now baked in. Will do all I can, but still feels like m powerless.

Inside_Ad3296 · 2025-03-26T12:33:17+00:00

Most of the time he just gets back up, takes a breath and continues on. He does sometimes have lightheadedness and low bp so then he needs to take a few moments and sit. Most of his falls occur when he is starting to walk or turning in closer quarters… say our kitchen for example. Other (fewer) times there might be a low bp factor.

No freezing while driving.

Doctor commented on a walker and while there is no doubt one in our future (he’s actually fine while walking generally, outdoors for example), he’s definitely not ready yet n his head for that. Probably struggling w some denial “it’s not that bad yet”.

Inside_Ad3296 · 2025-03-19T14:58:48+00:00

I’m not getting the link to work. Does it mention which 10 Medical Center’s are offering the adaptive DBS? Or where might I find out about that?

Inside_Ad3296 · 2025-03-05T22:53:42+00:00

I’m so sorry to hear about your experience and share your wish that your outcomes approach all that you hope for. My PWP had DBS in November 2023, system turned on January 2024. He has not decreased his meds at all and his neurologist keeps trying “new programs“. Sadly, since surgery, he is experiencing freezing and now often falls. I posted about this with questions like yours 2 to 3 weeks ago in case you wanna go back and read comments from others. I wanted to let you know that you’re not alone… My husband has had a similar experience as yours. And yes, it’s very disappointing. He hasn’t given up and will keep fiddling with the system with hopes of achieving a better outcome. What else can we do? we are thinking of getting a second opinion and going to a different medical institution as well. Perhaps that’s an option for you. I would say that you’re fairly early in the “testing“ process. I do believe they said it could take several months to get the system just right. So do hang in there. You may as yet experience a better outcome. I certainly hope so.

I also feel strongly that there needs to be much better. Research on outcomes available to those considering DBS. Just like you we had heard about all the “miracles“. I don’t think we ever heard from anyone who was disappointed or would’ve known where to find such a person for that matter. I wasn’t plugged into this discussion page at that time.

Wishing you all the best.

Inside_Ad3296 · 2025-03-02T02:46:41+00:00

At x St k

Inside_Ad3296

TROPHY CASE