Hey Gang. I thought I’d post something as I’m aware that a few of you are following my story with a mind to seeing how it fits into your own life? So, turned on Friday, felt awful Saturday (as you know) better Sunday. But yesterday and today I had awful issues with my voice. The programmer had asked me whether it had affected my voice at the time and it really didn’t feel as if it had. Anyway, things were awful the last two days: I was slurring and couldn’t organise my sentences and so I spoke to the DBS nurse this afternoon: she suggested that i take the power down a couple of notches on either side. Worked out so well. I think that the operation damaged it a bit but it’s cool now. Moral of the story: be careful that it’s not turned up too high, as your voice might suffer. This is for StN targets. The GPi is less of a problem.
DBS journey: Hey Gang. I thought I’d post... - Cure Parkinson's
DBS journey
Glad to hear, Jeeves. What are the consequences of turning down the frequency or power to help with the voice on other functions?
good to hear things could get corrected
Still no regrets I assume
Thank for the updates Adam. Sounds encouraging!
My husband had his settings reduced in July after almost 18 years. If too high his voice and falling are affected. He switches it off entirely to walk better when 'on' but cannot manage without it when 'off'. His main problem is tremor.
That’s interesting Jeanie. Had his settings reduced after 18? Goodness. Yeah. I was thinking the same as hubby but wondered if it was good to keep moving it up and down? What a drag this voice aspect is eh? I wish it was made more apparent then I think I might have argued for GPi more forcefully.
Medtronic 1.3 down to 1.1 and 2.5 down to 2.3
Hi Jeeves my husband age 66 just had DBS done on September 19 and gets turned on tomorrow with Medtronic. This is his second rodeo. He had DBS in April 2021 with Boston Scientific battery. He kept getting infections in the chest and had several batteries taken out and put back in and finally they took everything out in December 2022. So we are trying this journey again because we know it worked so well the first time when he wasn’t getting infections they decided this time to put the battery deeper in the chest where there is better blood flow . We are praying for a good outcome this time because this really does work. He did have some issues with some balance last time and he did have to turn it down. But he also had to turn it up when the tremors were worse but overall he was very happy with the outcome, the few months that he did have it. Good luck with your journey! Keep us posted.
Can you share what improvements you are experiencing?
Having said Nope to Jeff above, I seem to be experiencing as many troubles as benefits Ron. Main result is dystonia gone. So too is bradykinesia. Lower meds mean no dyskinesia. However, I appear to have unacceptably altered speech when I achieve t these. In addition I suspect that I’ve developed an allergy to the leads as I have itchy eyes, palate of my mouth roof is often itchy etc. Could be a coincidence but lead placement is the only thing I’ve had new on the last month.
It sounds like you need some fine tuning and hope you then find the perfect balance of symptom control. Here in Canada, a news anchor Harry Forestall had DBS with excellent results. Perhaps you can learn from his experience. You will be fine.
Bradykinesia is gone? Wow! You must be shredding on your guitar!
Well it’s gone but my coordination between the two hands ain’t what it once was. But I was never a shredder actually Bass. More of a feel man?
I feel ya, man! Lol i mean, I know what you mean! I'm just rooting for you, I want to see you succeed!
😂 Me too. I’ve got a 2nd programming session on the 6 November. Im going to whinge a fair bit and hopefully they’ll get it right this time!
It could be nonallergic rhinitis after receiving supplemental oxygen during deep sedation. That's what happened to me after having a colonoscopy. See ncbi.nlm.nih.gov/pmc/articl....
I have to say Ron. That I always believed that I was a GPi candidate rather than an STN. I’m slow and have no tremor or dyskinesia really. But hey, what do I know matey?
Hi Jeeves, its good that you have the ability to tweek the settings on DBS. When you dropped the power slightly did you feel any different other than improving your speech?How's the Bradykinesia, has that improved?
No. It’s a live issue Ginge., Turing it down has repurcussions for the whole body unfortunately. So I’m not a happy bunny currently.
Oh, I've just read through your replies to everyone. It sounds like your speech is still an issue. Regarding the roof of your mouth and itchy eyes, have / can you switch the DbS off. It could be the signal the wires emit rather than the wires themselves.
I couldn’t switch it off Ginge. I’d be all over the place. I take your point though and will mention it to the programmers
My husband had DBS a year ago. A weaker voice had always been an issue, but voice therapy has helped. Two weeks ago, he found himself having difficulty speaking and issues with swallowing. I was sure it was progression. We spoke to his DBS technician who asked us to check what level he set his DBS hand controlled device. Sure enough, and unbeknownst to me, he cranked the left and right side of his DBS controller from 3.2 to 3.7. Essentially, he turned it up so high, he knocked his voice out and swallowing became an issue. We have since lowered it back to 3.2, and he's back to "normal" -- whatever can be considered normal any more, but his speech is back and he can swallow again.
Hi Jeeves, have you had any improvement in your speech and general parkinsons symptoms in the last week? I've been reading about the two target areas for Dbs. STN and Gpi. Seems speech and gait are common problems with STN. Less so with Gpi. Did you get to discuss this prior to the surgery or was Gpi not an option?
Hi Ginge. I argued that the GPi was the place to put the leads but my surgeon conferred with my neurologist and dbs programmer and they all thought that the STN was the place. Naturally I kowtowed thinking that 3 against 1 was fair enough. But I’m still waiting for serious benefits: true, dystonia has gone but I can’t really speak well any more and balance has been disturbed. Also, my energy levels are quite low.
Hi Jeeves. Just wondering if anything has improved with your DBS situation. I have an appointment with my neurologist tomorrow and hope to discuss STN vs GPI and whether I have a choice. Cheers
Yep. For some reason my voice seems to have returned for the last couple of days. I have no idea why. Go for it Ginge. It’s worth it just to be able to turn over in bed and to get out of the bath without help!
*ucking hope so mate.
You’ll reach the point I suspect that the disease will become too much to cope with. DBS will reward you with much needed relief.
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