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Old 07-14-2012, 08:40 AM   #1
Newbie
(male)
 
Join Date: Jul 2012
Location: Prince George's County Maryland USA
Posts: 4
Idiopath HB User
Am I recovering?

Has anyone ever recovered from PD?

I had debilitating symptoms beginning about ten years ago - had unilateral DBS in 2008 which provided immediate relief - last February I started turning it off overnight to extend battery life - after most recent neurologist's visit last Tuesday we decided there is no evidence that DBS is needed and we turned the stimulator off, now Requip & Stalevo and twice weekly PT are all I need.

I can play guitar, sign my name, print legibly - none of which I have been able to do for five years.

I'm getting better! Not all better [yet] but better.

I can even type this, rather than dictate. Right hand, welcome back!

 
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Old 07-20-2012, 06:33 AM   #2
Newbie
(male)
 
Join Date: Jul 2012
Location: Prince George's County Maryland USA
Posts: 4
Idiopath HB User
Re: Am I recovering?

Still stimulator free - yesterday I did jumping jacks f or the first time in eight years!!!

 
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Old 08-29-2012, 05:27 PM   #3
Junior Member
(male)
 
Join Date: Aug 2012
Location: Capalaba
Posts: 14
karl456 HB User
Re: Am I recovering?

Hello there,

My name is Karl from Brisbane Australia and also a 'Newbie' on HB.com.
Would you please let me know abt ur experiences with DBS, which helped you and now isn't needed anymore? Been diagn wid PD since 2008, after taking Madopar and Sifrol, it starts to wear off and I am back with my start-up symptoms. What's your experience?

Regards, Karl

 
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Old 08-29-2012, 09:15 PM   #4
Newbie
(male)
 
Join Date: Jul 2012
Location: Prince George's County Maryland USA
Posts: 4
Idiopath HB User
Re: Am I recovering?

that is just about it. I had the DBS, and it was instantly miraculous. The tremors ceased, and rigidity lessened.

Three and half years past the daily stimulation seemed to have a beneficial effect,, when combined with weekly physical therapy, regular drug therapy [which means paying attention to when you're supposed to take your dosage] and dogged refusal to accept limitations as permanent-added to a natural tendency toward neural plasticity- has resulted in recovery instead of just maintenance, infused with flavor of hopelessness.

the stimulator is still turned off

I feel like Lazarus, raised from the dead. It's not all that, in my imagination Lazarus later took a job at 7-11 to avoid the people coming up to him and saying "hey you're the guy came back from dead right?" and asking for autographs. At some point you just have to get on with your life.

I'm alive, I'm not as debilitated as I was, hooray, but it's not permanent, it seems dependent on how much belief I have in my recovery and how much effort we put into maintaining it.

today I wrote a cover sheet for facsimile transmission my hand on the first time in 5 years. I joked that being able to write with my right hand is like having a portable printer with me at all times-ability you take for granted.

 
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Old 08-29-2012, 09:19 PM   #5
Newbie
(male)
 
Join Date: Jul 2012
Location: Prince George's County Maryland USA
Posts: 4
Idiopath HB User
Re: Am I recovering?

that is just about it. I had the DBS, and it was instantly miraculous. The tremors ceased, and rigidity lessened.

Three and half years past the daily stimulation seemed to have a beneficial effect,, when combined with weekly physical therapy, regular drug therapy [which means paying attention to when you're supposed to take your dosage] and dogged refusal to accept limitations as permanent-added to a natural tendency toward neural plasticity- has resulted in recovery instead of just maintenance, "infused with flavor of hopelessness."

the stimulator is still turned off

I feel like Lazarus, raised from the dead. It's not all that, in my imagination Lazarus later took a job at 7-11 to avoid the people coming up to him and saying "hey you're the guy came back from dead right?" and asking for autographs. At some point you just have to get on with your life.

I'm alive, I'm not as debilitated as I was, hooray, but it's not permanent, it seems dependent on how much belief I have in my recovery and how much effort we put into maintaining it.

today I wrote a cover sheet for facsimile transmission my hand on the first time in 5 years. I joked that being able to write with my right hand is like having a portable printer with me at all times-ability you take for granted.

 
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Old 09-03-2012, 07:06 PM   #6
Newbie
(female)
 
Join Date: Feb 2012
Location: Brisbane, Australia
Posts: 1
Zim1 HB User
Re: Am I recovering?

Idiopath - what a blessing. I am so pleased for you. and may it continue and continue

 
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Old 09-05-2012, 07:44 PM   #7
Junior Member
(male)
 
Join Date: Aug 2012
Location: Capalaba
Posts: 14
karl456 HB User
Re: Am I recovering?

Hello,
Would you please let me know, what DBS means?
Thank you, regards Karl.

Last edited by Administrator; 09-08-2012 at 06:15 AM.

 
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Old 09-07-2012, 04:26 AM   #8
Junior Member
(male)
 
Join Date: Aug 2012
Location: Capalaba
Posts: 14
karl456 HB User
Re: Am I recovering?

Quote:
Originally Posted by karl456 View Post
Hello,
Would you please let me know, what DBS means?
Thank you, regards Karl.
DBS = Deep Brain Surgery...

_________________________

 
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