So gang. I was really off when I turned up, not having had meds for 4/5 hours? Whole body dystonia, plain awful. The switch on was good in terms of removing this dystonia but I think I was expecting a brand new body! Ali noticed a big difference when they dialled everything in. . So, my bradykinesia and stiffness are ‘ partially’ dealt with via the DBS as well as meds. But there appear to be some issues unfortunately: I had meds yesterday afternoon and was able to be a passenger in a car for 4 hours without any dystonia whatsoever. That’s great, but even with meds, my bradykinesia seems to still be apparent. So with no dbs: I get meds that work, but with dbs, they don’t? Bit weird. Last night I was totally exhausted. I went to bed at about 9 and woke up at 8 without any sleeping aids whatsoever. Took a couple of Madopar but they don’t seem to have worked, at least with bradykinesia. So I’m not sure yet gang. It was a WOW in terms of dystonia disappearing but it’s odd that pharmaceuticals which previously worked well, seemed to have stopped working in tandem with the DBS?
Not much energy, Slight headache , feel I could have another 12 hours sleep and some slight, very slight nausea. Thoughts on a postcard please…….
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Thanks Adam. A curates egg - but it's early days. I think it often takes a few goes to get it tuned properly. Hopefully things will progress 🥂🍾. Have a virtual bottle of blanquette on me
Exactly and THEN SOME! It's life time adjustments with an excellent programmer who gets to know you and where your problem points are, then it's a contact at a time, changing programs or adding programs to help specific things. You'll get there Adam.
thanks for sharing your experience with us. It sounds like it’s going well. Takes a few tries from what I’ve gathered I follow this guy on TikTok. Hope he is of help tiktok.com/@carlcs1?_t=8g7e...
I dont claim to know anything about this area, but heres a random thought. Maybe cut your dose in half. My theory is that the regular dose PLUS the DBS might be overstimulating. Cant hurt to try.
Another theory is the electronics are causing some polarization that is interfering with the chemistry. I have nothing to back that theory up, though,
But I would trust MBAnderson on his comment, that it will take lots of tuning and tweaking things to find the best zone of treatment.
Thank you so much for the thought Bass. It is a bit weird isn’t it? I’m at a bit of a loss re. what to do but you’ve had the courtesy and thought to make some suggestions. Thanks from the heart Bass. I wish you the best!
I agree with Bass also Adam, the different programs stimulate in different ways - longitudinally vs horizontally. I'm no scientist but when my hubby was in testing a few years back now his Prog 4 (for example) was moved onto Contact number 8 instead of 1 - nausea ensued as it was pulsing into an area that for him - just didn't work. So the programmer backed off that one and found another one. From there they found that for him, his left side brain (which is the right side in DBS - go figure) took stimulation far better when it was at a certain level than the left side. So everything was set differently. You WILL get there - TIME OKAY !!! It's only been 2 days.
I was wondering how you were getting on. Great news with the dystonia. Im sure as others have said it takes time to settle down. Do talk to your team and any worries though!
Hi, pleased to hear your switching on went well and some of your symptoms especially that pesky dystonia, which is so annoying, has stopped. There must be plenty of people on here who have experienced DBS and their experience would be so helpful for you now. I only know of one person who had it done and they are on this website and doing very well.
It must just be a balancing act as others have replied, just like when you first take PD meds and they take a while for your body to react. Nothing seems an exact science.
Just try and keep positive, play your guitar, take a walk with this great 🌞 weather and I’m sure, given time, you’re going to come through this period of adjustment. It’s early days at the moment. Take care 🤗🤗
Thanks Zella. I’m sharpening my wood tools currently which is a good sign that I’m lifting myself out of the depression which I think I’ve been in for a while. If/when I’m able to exercise, as well that’ll be me sorted I 🤔.
Please be patient. Your body is still healing from the surgery. It will take time. Even after a tune, it can take a few days to see the true results. Keep note of the problems and do not be afraid to go back to the doc to get the right tune. (as many times as you need to) It's not an exact science, it's a lot of trial an error. But when you get, you will love it.
My husband is. He got it in 2021. It's been a process, but he's got a great tune currently. Hardly any tremor left and he can move faster. But in reality, he still has Parkinson's so it doesn't fix absolutely everything. But what it has given him back is definitely a gift. I can't imagine him without it.
Hi Adam. This, at first, may not sound like a good news story, but read on……I have a friend who had DBS on Valentine’s Day and she is finally getting her programming to where she and her doctor want it. She lost her dad not too long after surgery so that kind of delayed it a bit and her symptoms were probably not like they “normally” would be because of the stress. But I’ve asked her several times during her journey if she’s glad she had the surgery and she always says….. “In a heartbeat”. So hang in there and you’ll get there.
I know some others that have had DBS, about 5 or 6, and they too have had a good experience with the surgery and all have been pleased with the final results. So far I haven’t talked to anyone who has regretted having the surgery. 🥊
Thanks Debbie. Feeling a tad better today thanks. And thanks for the information on your friends . Yes, even at this early stage I’d do it again. It’s just not always the straight road that you envisage.
I just wanted to thank you for sharing your experience with all of us at the same time as you are still getting used to this new DBS environment. It is truly very generous of you.
I am not a very patient man so it is slightly ironic that I join my voice to all the members who recommend patience, but I think they are right!
Please keep on informing us on your journey as many of us will be following in your steps one day.
In the meantime, I wish you continued positive progress.
Thanks Michael. I feel slightly better today thank you. I think that sleeping for 11/14 hours the previous two nights mean that my body is trying to tell me something ie I’m knackered and that some restorative measures are underway! What freaked me out was that yesterday the drugs didn’t work at all. I need to remind myself that PD drugs are notoriously temperamental. Best
First time commenter with no ideas for you but to be patient. I don’t know anyone who has had DBS. One of the guys I box with is waiting for his surgery date. I’ll start on all my tests in Spring 2024. I’ve been stalking this site for so long and consider many of you friends, as I respect your points of view and honesty. You are one of them. Thank you for making DBS a little less scary. I’m rather jealous that you sleep. Oh, to get 8 restful hours. It’s been years since that’s occurred!
With gratitude from Wisconsin, USA. Land of Packers football, cheese and beer!
jeeves19 , I am in awe of your posts about your DBS journey. Your courage and openness give us hope, as one of our sons just got approved for DBS. Thank you for mustering the energy to provide an honest picture of your experience, even when you haven't felt good.
Our son is scared yet resolved because the dystonia and bradykinesia are severe, impairing his ability to work and be the husband and daddy he wants. Neither he (early onset) nor my husband (late onset) are on HU, so as I follow you and the comments made by others, I am sharing with them.
Please know from the bottom of my heart how helpful it is hearing from you firsthand as we balance the expectations of what the neurological team has told us and prepare to support our son through the procedure.
PS... my husband and I love your Elvis cover! He's in a band... he gets it! More please! Bravo!
Adam, have I ever mentioned to you that it might be possible that you worry too much.
Do something to take your mind off it. The Major League Baseball season is over and the playoffs start on tuesday afternoon. The Blue Jays will win . The NFL football is in full swing and the CFL ( Canadian football ) season is almost over . Some good movies on Net Flix and one beer or scotch will not kill you( I don't think )
Doris Day (You had to be there ) She was the girl next door but when she was on the Perry Como show she flirted with him unmercifully. Beads of perspiration on his forehead and every man watching.
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DBS SURGERY
DBS Surgery #2, a personal essay
