DBS or : No DBS : Please share your story... - Cure Parkinson's

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DBS or : No DBS : Please share your story by taking part in this survey https://surveyhero.com/c/9147d280

Xabojuro2 profile image
14 Replies

results will be published here tinyurl.com/yaqkvjlk

I'm lined up for DBS and I'm going through a period they call 'working up' which will test my readiness and ability to live with electrodes in my head and a battery buried into my chest.

my family, colleagues and friends are divided on what I should do?

the days in which my body is not functioning, I often think I will pay any price to regain normality (DBS or any other).

I am 52 in a good physical condition and able to function okay on medication almost more than 50% of the time.

but I need and want more as I am in full employment and restless by nature.

I have invested time talking to people who had DBS and they told me it's a life changer and they do not regret one bit their decision to go ahead with the DBS operation.

some say DBS should be the last resort and in my age and the fact that I can function with medication and sports maybe I should delay DBS.

my current medical team told me that younger patients respond better to DBS. this means is better to have it now rather than at a later stage where its effectiveness is reduced.

I have good support at home and in my work and I would be looked after if I have the operation.

I have recently went to se

e Dr C in the hope that all delay or avoid an intervention of this type but I fear that the B1 vitamin treatment may not change my condition drastically soon enough

my medical team are confident and they have been successfully doing this procedure for a very long time

To help me make up my mind and learn from others i put together a small survey

if you have had DBS, can you please share your experiance by filling this form

surveyhero.com/c/9147d280 will publish survey findings

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Xabojuro2 profile image
Xabojuro2
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14 Replies
JohnPepper profile image
JohnPepper

Hi. You are asking for advice as to whether you should have DBS or not. You don't mention ever having spoken to people whose DBS did not turn out well. I have spoken to many people who have had DBS and some of them did not do well at all, in fact they did a lot worse.

You say you are still physically fit and you are still quite young. Why have you not looked at doing some specific exercise that has been shown to slow down or even reverse the symptoms of Pd? Have a look at my PROFILE and also look at my website, reverseparkinsons.net and contact me to get more information on how I have turned my life around and it did not cost me anything. I will help you to make your decision AT NO COST WHATSOEVER!

Xabojuro2 profile image
Xabojuro2 in reply to JohnPepper

are you simply saying don't bother with DBS and keep working in the gym and it will all be fine.

JohnPepper profile image
JohnPepper in reply to Xabojuro2

No! DBS is irreversible and is a very serious decision to make.

Before going there, I think that everybody should first try to do the Fast Walking. It costs NOTHING and is capable of produce GDNF in our brains, which is a natural protein produced in the area of the brain that is damaged by the Pd.

That has been my experience and many others are busy trying it.

Contact me and I will send all the info to you at no cost.

Xabojuro2 profile image
Xabojuro2 in reply to JohnPepper

DBS is reversible

Jebbie12 profile image
Jebbie12 in reply to JohnPepper

Sounds like you are selling something and DBS is the competition. Get your facts straight. DBS is reversible.

JohnPepper profile image
JohnPepper in reply to Jebbie12

My Apologies. I would imagine that the patient will still have had two holes drilled in his/her head and ad other articles in-planted in other areas of the body, which would also have to be removed, at great expense no doubt.

Xabojuro2 profile image
Xabojuro2

thanks for those who took time to fill the on-line survey. i don't have a large enough sample yet but some trends are starting to emerge. i included in the post a taster of what outputs may like ...

ktbate profile image
ktbate

I'm so glad you are doing this survey. I'm on the fence and don't know what to do.

Please share comments and survey results.

Xabojuro2 profile image
Xabojuro2 in reply to ktbate

see this pls

like u i am too on the fence

Xabojuro2 profile image
Xabojuro2 in reply to Xabojuro2

tinyurl.com/yaqkvjlk

Xabojuro2 profile image
Xabojuro2

It is not an easy decision to make. the three things which tilt the balance towards a yes decision for me are: the operation is not as complicated or scary as people make it, I have yet to come across anyone who regrets having DBS, most probably you need it if you are talking about it.

I will share the results of the survey

Gioc profile image
Gioc

Frankly it seems a bit excessive to resort to DBS, unless one has many points on the UPDRS test, with all the new approaches that delay the progress of the disease, thiamina in particular, but also with others things, I would try to have an almost normal life and stable with these, then we will see scientific progress. It 'obvious that there is no such thing "in one fell swoop" that gives you life as before as perhaps the DBS promises , but not always things are like that. With a little patience working a while, neglecting some small high and low you could have a better and stable life that is not little if you have the PD.

Gio

Xabojuro2 profile image
Xabojuro2 in reply to Gioc

Thanks. It seems to me that the most common view is to avoid it. but on the other hand, the experiences of those who had the operation is not to delay it. I'm going through the thiamin treatment alongside my conventional treatment.

ktbate profile image
ktbate

How about asking what kind of DBS machine was used. Medtronics (older original model), Boston Scientific or St. Jude. Last two are the new improved models. I'm trying to decide

also. Love to hear the results of the survey.

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