Tony

My body is still affected by PD  -  poor balance,  slow movement, hands 
still like paws, difficulty speaking.. fatigue..   The main thing DBS did 
for me was stop the tremors although when my stimulators died I could barely 
move at all.    I was taking carbo-levodopa every 3  hours to barely move 
while shaking.

PD meds never helped me much so I haven't taken them.  also I had nausea the 
whole time stims were off and taking meds.  I lost a couple of pounds.  also 
had muscle cramps.  after replacement surgery I stopping taking carbo-levo. 
as DBS   helps some w/movement.

I was able to solve mystery of my voice problems.  when stims were off I 
still had difficulty but it was not like being choked when I talked.
so it is both PD and DBS that cause difficulty.

I never got my life back  because I can't  walk very far even with a walker 
and quickly become exhausted, am always in danger of falling, hands are like 
paws,  can barely speak.    Meds don't help much so I don't take them.   I 
can't do the things I did pre-PD or even 3 years ago.  But I still  manage 
somehow with help 2 days a week in my home.  I used to go out to eat and 
drive.   Serve as a National Parkinson Foundation local chapter director.

It's a matter of degree.   Without DBS life would be impossible.

You are correct that different folks get different results so you won't know 
in your own case until you have it done, although I can assure you it stops 
tremor.   It is used for essential tremor as well as PD tremor.

Hope this helps.  Its worth it.

Ray

--------------------------------------------------
From: "Rose Jardim" <[log in to unmask]>
Sent: Sunday, September 12, 2010 11:28 PM
To: <[log in to unmask]>
Subject: Re: Intoduction and Deep Brain stimulation

> Hi Ray,
>
> What do you mean you haven't gotten your life back?  Is it due to the fact 
> that you are still monitoring the electrodes and still taking medication 
> or is your body physically still affected by the PD.
>
> I do apologize if the question is a bit ignorant but I'd truly like to 
> know how successful the surgery was.  I also do understand that the 
> surgery has different effects on different people buts its nice to know 
> the different effects so that you develop an expectation...?
>
> Thanks
>
> Tony
>
> -----Original Message-----
> From: Rayilyn Brown <[log in to unmask]>
> To: PARKINSN <[log in to unmask]>
> Sent: Mon, Sep 13, 2010 8:00 am
> Subject: Re: Intoduction and Deep Brain stimulation
>
>
> Pat
> I had mine done at Scripps Clinic in La Jolla CA in 2003.  My neurosurgeon
> as Dr. Thomas Waltz.   Sadly, he died a couple  of years ago.
> cripps has a great  program, I think.  I actually had two DBSs.  One side
> as redone as he wasn't happy with placement of electrodes.
> I haven't gotten my life back, but these procedures have allowed me to
> xist.  And boy was I reminded about a month ago what I'm like without it.
> Ray
> --------------------------------------------------
> rom: "Nursepyn2" <[log in to unmask]>
> ent: Sunday, September 12, 2010 8:43 AM
> o: <[log in to unmask]>
> ubject: Re: Intoduction and Deep Brain stimulation
>> Thanks Rayilyn, for responding to "DBS Surgery", any information we can
> obtain will be helpful. Where did you have yours done and who was your
> neurosurgeon?
> Thank you so much for all you do for the Pd community.
> Pat P.
>
> -----Original Message-----
> From: Rayilyn Brown <[log in to unmask]>
> To: PARKINSN <[log in to unmask]>
> Sent: Sun, Sep 12, 2010 2:00 am
> Subject: Re: Intoduction and Deep Brain stimulation
>
> Tony
>
> I had 2 bilateral DBSs in 2003 and last month got a taste and reminder of
> what  life is like for me without it when my stimulators died.  I never
> got
> relief from medication, so it was a lifesaver for me; however, if meds had
> worked I doubt I would have had it done.  People get different results so
> you need to decide for yourself.
>
> I want a cure in the form of a vaccine.
>
> Good luck.
>
> --------------------------------------------------
> From: <[log in to unmask]>
> Sent: Friday, September 10, 2010 8:11 AM
> To: <[log in to unmask]>
> Subject: Re: Intoduction and Deep Brain stimulation
>
>>
>>
>> Hi Tony.  There is a group on yahoo dedicated solely to DBS  surgery.
> It
>> is [log in to unmask] (mailto:[log in to unmask]) .
>> I'm
>> nowhere near having DBS but I like to keep up to date with what is
> going
>> on
>> in the field.  Let us know how you make out.
>>
>> Roberta Innarella
>>
>>
>>
>> Father  God, Today I am afraid. I look around me at this world that is
>> changing so  fast and I feel lost like a small boat in the midst of a
>> storm. I
>> am not  built to weather the battering waves or the howling wind. So
> I
>> wait
>> now in  your presence. You spoke the oceans and the four winds into
> being.
>> You  threw the stars in the sky and separated the sea from dry land.
> You
>> took
>> the hand of Peter who was sinking into the depths of the water and
> walked
>> him to safety. I choose now to fix my eyes on you and not on the
> storm. I
>> settle my heart on your love and not on the current that threatens to
> pull
>> me under. Thank you that you are my firm anchor even through the
> darkest
>> night, Amen
>>
>>
>> In a message dated 9/10/2010 2:10:09 A.M. Eastern Daylight Time,
>> [log in to unmask] writes:
>>
>> Hi  my name is Tony Duarte I have had PD for 21 years.  We found your
>> support group via a few google searches and thought it would be a
> great
>> idea to
>> chat to other people with PD.
>>
>> I am particularly  interested in the Deep Brain stimulation surgery.
> Has
>> anyone done  this procedure?  If so what were the results of the
> surgery
>> and
>> would you recommend it.
>>
>> Kind regards
>> Tony
>>
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