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 Deep Brain Stimulation: Attn; Robin 
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Deep Brain Stimulation: Attn; Robin
Robin, please help me to feel better about my dear friend who has been suffering with difficulties for some time. Several years ago it was decided that she has Parkinson. Perhaps this is correct. She has hand tremers, shuffles as she walks with a walker, falls a lot, Medicaid sends a lady to be with her eight hours each week day, and my frfiend Is a very needy person. We talk on the phone occasionally... A dau. lives with her and thinks she has found a local neurologist who can cure her. My friend is 82 years old. The new doctor will be doing deep brain stimulation on her on the 20th of this month.

Can you give me a little bit of hope that I should not worry too much about my friend. Of course, I have told her that I am very optimistic about it and will be waiting to hear the results but frankly I'm frightened.

DrP


Fri Oct 07, 2011 10:20 pm
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Location: Minnesota
Post Re: Deep Brain Stimulation: Attn; Robin
Dorthea, I'm sure Robin can probably give you reading references about this. There are also remarkable utube videos on the subject. Here is one of an operation at Mayo: http://www.youtube.com/watch?v=M_fjiEOb40M and here is one of a patient, after 1 year: http://www.youtube.com/watch?v=Uohp7luuwJI&feature=related

The whole thing reminds me of pacemakers.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Oct 07, 2011 10:49 pm
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Location: LA
Post Re: Deep Brain Stimulation: Attn; Robin
Okay, thanks Jeanne, I will watch the videos but the last sentence you added about the pacemaker comparison already makes me feel better. I do wish the best for my friend.

DrP


Fri Oct 07, 2011 10:53 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Deep Brain Stimulation: Attn; Robin
Dorthea, In our PD group one of our members had the DBS and it has been 2 1/2 years and it didn't help but we need to remember every situation is different. He is in his mid 50's, I'd also be worried with someone in their 80's, wishing all the best for your friend. Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Oct 08, 2011 8:05 am
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Post Re: Deep Brain Stimulation: Attn; Robin
As I understand it, DBS is for PD only and is not recommended for those who also have dementia. I think dorthea's friend just has PD, if I read the post correctly.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Oct 08, 2011 9:35 am
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Location: SF Bay Area (Northern CA)
Post Re: Deep Brain Stimulation: Attn; Robin
DrP,

I think they've done 15K DBS operations in the US and Canada since the Medtronic device became FDA approved. The biggest risk is that someone has a stroke on the operating table; I think that risk is 1%.

In general, DBS for PD is done under these circumstances: if Sinemet (levodopa/carbidopa) improves tremor and Sinemet has been taken for so long that the medication is causing dyskinesias or big swings in off- and on-time. DBS will only improve symptoms as much as Sinemet on-time. This means that DBS doesn't prevent falls because Sinemet doesn't prevent falls.

The first studies are being published of 10-year histories of people living with the DBS implant. These studies show that DBS is not a cure. Those with PD still have PD symptoms.

DBS would only be considered on an 82-year-old if she is very healthy otherwise -- so slim risk of dying on the operating table. And it's only considered if the patient has good family support.

To feel better about the situation, you'd need to know more about your friend's expectations, her history with Sinemet, and if she has any other co-morbidities.

From the sounds of it, she might come through the surgery just fine but see not much quality of life improvement.

Robin


Sat Oct 08, 2011 10:29 am
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Location: SF Bay Area (Northern CA)
Post Re: Deep Brain Stimulation: Attn; Robin
The single best print resource on DBS is from the Parkinson's Disease Foundation:

http://www.pdf.org/pdf/DBS2008.pdf

One of the best informational online videos features a terrific movement disorder specialist, Dr. Joseph Friedman, of Rhode Island:

“How is Deep Brain Stimulation used to treat Parkinson’s Disease,” 5.5-minute online video with neurologist Joseph Friedman, MD, June 2011. Dr. Friedman addresses the use of DBS to treat two situations in PD – refractory tremor and uncontrolled fluctuations. Two Rhode Island men with PD also talk about DBS. See: www.youtube.com/watch?v=2fWhcji9dCI


Sat Oct 08, 2011 10:33 am
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Joined: Sat Oct 06, 2007 4:28 pm
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Post Re: Deep Brain Stimulation: Attn; Robin
I really needed "my forum family" to talk about this. You all came through for me. I know more about what my friend is facing and I have more of an idea how I will be standing by to be a real friend as needed. I will let you know how this turns out. My fear is that there is more than PD in her condition that she has covered up from others. I hope I'm wrong. A huge Thank YOu to all!

DrP


Sat Oct 08, 2011 11:48 am
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Post Re: Deep Brain Stimulation:
My brothers wife had deep brain stimulation about 6 years ago because besides being on all the best medications for parkinson's, she had so much extra body movement, she couldn't even stay sitting on the sofa. Her arms, legs etc flailed about so much she would just inch off the chair and needed to be moved back on often. She had so much extra movement, in spite of eating well, she got thinner and thinner. As a last resort they inplanted a deep brain stimulator. It took a while and required many adjustments in the voltage she received but at least is now able to sit in a chair. Of course she still has all the other Parkinson's movements but I would say there was improvement but not a cure. In addition to careful monitoring, its my understanding, like a pace maker, battery needs to be changed every so many years, which require surgery. She is about 62 years of age. Just my two cents worth of information I received from my brother. He has been her caregiver for about 12 or more years now.
Mary


Sun Oct 09, 2011 1:47 pm
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Post Re: Deep Brain Stimulation: Attn; Robin
My friend survived DBS and is back in her comfy hospital room. Everything went according to plan and I might add also according to what was written here by my forum friends. Now we will wait for the follow up in the weeks and months to come.

I had to laugh, as she was coming out of the operating room, she asked for her dau. and then wanted to know how my cataract surgery went and if I was alright. Something in her brain must be working right.

I can breath a little easier about her now. Thanks again to all of you for your discussion about this topic. Amd yes, both my eyes have had cataract surgery and I am fine. Let the healing continue.

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Fri Oct 21, 2011 12:14 am
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Post Re: Deep Brain Stimulation: Attn; Robin
DrP,
This is good to hear. There is a lesion effect for the first several weeks. Afterwards, they will turn on the stimulator.
Robin


Fri Oct 21, 2011 12:41 pm
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Post Re: Deep Brain Stimulation: Attn; Robin
My friend, Doreen, who went through Deep Brain Stimulation [the first phase] was released from the hospital. While on the way home she asked her daughter to come through my driveway. Dau. gave me a phone call asking me to come to the back door so she could see me. Doreen took off her crisp white baseball cap so I could see her shaved head [top only] and scar. The stitches have been removed. In a few weeks they will turn on the connection for stimulation. A Doctor from Vanderbilt supervised and a team from Vanderbilt is/are studying her case and several will be here as time goes on to tend to her progress. So far so good.

Dorthea


Wed Nov 09, 2011 3:37 pm
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Post Re: Deep Brain Stimulation: Attn; Robin
Doreen will have a stylishly short haircut for awhile!


Wed Nov 09, 2011 4:34 pm
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