HAS ANYONE HAD D,B,S, TURN UP AND MADE ... - Cure Parkinson's

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HAS ANYONE HAD D,B,S, TURN UP AND MADE THEM WORSE?

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LAST FRIDAY AT THE WALTON CENTRE THEY TURN UP MY D,B,S AND I HAVE NOT BEEN RITE SINCE. .

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compucure profile image
compucure

The settings are very precise and I too have experienced fluctuations with alteration to the programming. Have you had both sides done and what are your settings on each side?

I would be inclined to turn the settings down and see how you feel.

Tony

Call your Doctor! That's what we pay them for! Don't assume you know anything! They are the experts! I say this a for your well being! I have DBS on one side only and I can turn mine up or down, but only a couple either way, at a time! Depending on what effects this is having would depend on what parameters would need to be changed! Do it today! Do not wait and take a chance of hurting yourself in some way!

Blessings,

Carol

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MY GP ANSWER IS I KNOW MORE THAN HE WILL EVER KNOW . thank-you anyway

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YES BOTH SIDE ARE SET ON 3. 2 VOLTS

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compucure profile image
compucure in reply to export

I would respectfully suggest that your settings seem on the high side. I am surprised you do not have a remote control - can you ask for one? Tony

debbie66 profile image
debbie66

Hi Export,

Yes your settings can be too high.My husband can only go to a certain level on each side and he cannot go above that as it brings back his dyskinesias with a vengence.You need to get in touch and go back and see them.If you have your remote or zapper as i call it you can turn yourself down,you only need to do it by 1 bleep and then see how you feel,it may work straight away or it may take a couple of hours

.My husband cannot go any higher than 3.1 on the left and 3.2 on the right,hope I was of some help.

Debra

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THANK-YOU Debbie .I haven't got a remote. If you don't mine me asking ,what could I do if I had a remote . Why do some have them and others don't ?

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debbie66 profile image
debbie66 in reply to export

Keith has a remote with his,I didn't realise that some don't have them.Keith can switch his settings down or up but only up to the setting that his PD nurse has set for him.also he can check to see that his battery is still ok as if it is not a light on the back of his remote goes either red or orange.

Maybe next time you go for a check up ask about the ones with the remotes or as we call it his zapper and I tell him if he doesn't behave I will switch him off.

It is held over the box in his chest and that is how his changes are made and that's how we check his battery.

Since he had it done in 2004 he has had the battery changed 2 times.

Jash profile image
Jash

My experience, in the last six months since my surgery, is that I have a low tolerance to voltage and my prgrammer adjustment is slight every two weeks because that's what I can tolerate. If you go too fast too soon, that could provide a less than satisfactory result.

grammieof3 profile image
grammieof3

I've been doing this for six years and moving up to much can throw everything off my neuro when he adjust me i can feel it right away and tell him no but he's real good about asking me if I'm ok. Go back and tell them u don't like the setting. I have a remote but i can only turn myself off and on. Dont know why i would turn myself off but certain security can turns me off and i have to use my remote to turn back on

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THANK-YOU I DON'T LIKE THE SOUND OF,BEING TURN OFF....

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debbie66 profile image
debbie66

Don't worry I have never turned him off.We do know that some people who have the DBS with remote switch it off on a night thinking they are saving the battery but actually they are using it more quickly.

Debra

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Hiya Debra do you know your husbands setting ?

I am on bipolar 3-2 positive left channel and 3-6 right channel volts .Which I know is wrong because two electors have blown .

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