DBS energy

[jeeves19]

Hi guys. I keep reading about people who -post DBS - went and ran a marathon etc and appear to have gallons of energy. Should I be feeling this? No, I don’t think that they’ve got the program right yet but running a marathon? Ay ay ay

[florence9]

Hi I had my activation yesterday. I'm finding walking difficult today just shuffling!

[jeeves19 in reply to florence9]

Yes. I found that certain things seemed okay when I was in there but less so when the days went along. Speech was fine when in there but not so good days later.

[florence9 in reply to jeeves19]

Have you been back?

[jeeves19]

I rang Cissy up and said I couldn’t talk. She told me to turn it down. I did so but then there are implications for other symptoms. No I go back on the 6 November.

[florence9]

I wasn't expecting this at all!

[jeeves19 in reply to florence9]

Did it happen during the programming session?

[florence9]

Yes but the. nurse thought it was me being tired and under medicated

[jeeves19]

is Cissy your nurse?

[florence9 in reply to jeeves19]

no, but i've just had a call and have reduced the stimulation, so see how that goes

[Todd-pw]

Hi I know someone who I think it was last year or year before had DBS. He was at first underwhelmed but now has nothing but praise for the DBS team says it’s given him his life back and looking at his pictures on his social media I would say he is definitely better off for it.

[jeeves19 in reply to Todd-pw]

Thanks for this information Todd. Very interesting. Thanks for chipping in.

[Tunasalad in reply to Todd-pw]

Hi, Do you know if his gait, balance, and freezing were better off? Or, did he not have an issue with any of those? Thanks

[blpai]

If someone is able to do a marathon after DBS , I will say let him or her stay blessed. Parkinson in the first place causes lots of fatigue and drains energy , whatever may be the PD symptoms. DBS only assists in better Symptoms control only if the program settings are Zeroed in. If one is able to live better quality life after DBS, it is the best thing to happen.

[jeeves19 in reply to blpai]

Thank you very much

[Bunny622023 in reply to blpai]

That is SO on the button blpai - couldn't have explained it better myself. THE PROGRAMMER is your best friend now, and DBS is only as good as the Programmer you have, in that he/she can zero in on the correct symptom control. One thing I haven't seen on HU is anyone confirming they have multiple programs on their electrodes with each contact on each electrode being stimulated by different programs. Example my husband has 4 programs each targeting different symptoms at different contact levels. In the UK in particular it seems like they do not do this. Does anyone know if this is correct?

[jeeves19 in reply to Bunny622023]

It’s actually quite odd how few DBS places there are to discuss matters. I know you said FB but I never liked the way FB is laid out. It’s like it doesn’t lend itself to discussion etc or storage of ideas.

[Bunny622023 in reply to jeeves19]

I suppose it comes down to what you are comfortable with. I find the DBS FAQS site extremely good on FB and on topic.

[jeeves19 in reply to blpai]

Rob cl em below makes an interesting comment below about his every levels 😊

[Gymsack]

The squeaky wheel gets the grease.

[robclem]

I am 8 weeks post surgery and have had 2 programming sessions with a 3rd scheduled for next week.

My walking was very bad pre surgery and I have seen a marked improvement post surgery almost back to normal which is amazing! I have however developed an old symptom of my eyes feeling very heavy, when this occurs I have been dialing my stimulation down and in fact yesterday I switched my device off and my eye completely went back to normal.

It’s a journey figuring out the best setting that works for you but I’m very encouraged so far and hood to have enough energy to climb mountains again!!

[jeeves19 in reply to robclem]

Thanks Rob. Yes, there’s always something to go wrong with each right isn’t there. I will refer your post to Blpai re. Your statement on energy.

[christymw in reply to robclem]

I have had similar problems with my dbs and eye issues - heavy feeling, fatigue, tic - my programmer informed me that one of the 4 leads is positioned fairly close to the optical nerve. He made some adjustments and also created a separate setting that has no charge going to the lead that is likely triggering the problem. It still bothers me on occasion- increase in charge that I forget to lower is usually at fault! Once I reset or go to the setting that the programer created to avoid stimulus to the optical nerve, I'm good.

[jeeves19 in reply to christymw]

Thanks very much for this. I’ll share your feedback with my programmer

[florence9 in reply to jeeves19]

how are you?

[Tunasalad in reply to robclem]

Hi, when you say your walking has improved, did you have any gait, balance or freezing? Thanks

[robclem in reply to Tunasalad]

I suffered with a leaning backward gait and my right foot turned in too which made walking very uncomfortable. Both of those symptoms have gone now for the most part.

[eschneid]

Do any of you DBSers feel that possibly in the future with new technological advances, that DBS might be the way to go vs PTT-FUS now? When you get a chance.

Wis ing you all much success.

Eric

[jeeves19]

The trouble with FUS is that it’s only offered in Switzerland and this is probably the most expensive country in the world. Hence FUS is ridiculously expensive. Secondly, FUS is unalterable. Once it’s done it’s done whereas DBS lends itself to numerous tweaks.

If I had my time again, the cost of FUS would always thwart me

[eschneid in reply to jeeves19]

I agree with the tweaking and with hardware in place , who knows what's up the road technologically.

If both were same $, what say you sir?

Hoping you are a little better today and everyday going forward.

Eric

[jeeves19 in reply to eschneid]

I’d go for the FUS as you can have this first and then DBS afterwards but not the other way around I believe.

[Tunasalad in reply to jeeves19]

I heard it was the other way around, once you have FUS, there’s no way to fix, DBS you can, I think.

[JerryinSATX]

Saw this article recently: parkinsonsnewstoday.com/new...

[florence9]

how are you?

[jeeves19]

I’ve been better to be honest Florence. Mainly voice issues and some balance. The dbs has got rid of the dystonia and bradykinesia though .

[florence9 in reply to jeeves19]

i'm finding walking much worse. I'm taking as much medication now as Imwas before. How about you?

[jeeves19 in reply to florence9]

No Flo. I can honestly say that my meds have fallen by about 30%

[Kwinholt]

Hi there. As a former marathon runner and post year and a half DBS, I’m going to be the negative Nelly. I will honestly say , at this point I wish i wouldn’t have had DBS surgery. Before DBS, I knew what to do for my body and how much meds I needed. I have been a long distance runner for over 20 years and I can barely walk an hour. I know DBS is not a cure but a tool to help and who knows, I’m sure I would be a lot worse without it. But I have such a fine line for the”on” control of my body , to over medicating causing dyskinesia. My marathons are what kept me sane. And I miss being that person. Enough negative Nelly, I am grateful to be here and spend time with my first granddaughter. I hope others have a better experience with DBS. Take care. Karen