Janet,
I had DBS in december 2004. My PD symptoms had progressed to the point I was
willing to try anything. I was in a lot of pain and my dyskensia was
horrible. It took adjustments for about a month and I felt great - like I
did before my diagnosis in 1992. I had batteries changed twice - march 2008
and March 2011.
I had to make several important decisions after I decided it do it. One is
finding a very experienced DBS neurologist that is willing to work with
you. Some do not like frequent visits so you can stay "tuned." The key to
success is not only the surgery but also the balance of meds and
adjustments.
Know about your surgeon. I had a very gifted surgeon who had done as lot of
DBS surgeries. I had complications with am unrelated problem , so I was
asleep during the entire procedure, . The surgeon and his team were able to
place it perfectly anyway. Usually you are awake so they can test you to be
sure they have correct placement.
With your doctor, decide if you need one side at a time, only one side,.or
bilaterally at once. I choose to have it bilaterally at the same time.
I have some problems since the DBS surgery, My voice is growing softer.
Check to see if you get voice therapy before your surgery. It could be very
helpful to keeping your voices strong. I also struggle with depression and
some memory problems. However, I am still very happy that I had the
surgery.
Beverly.
-----Original Message-----
From: PARKINSN automatic digest system
Sent: Thursday, March 24, 2011 11:00 PM
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Subject: PARKINSN Digest - 23 Mar 2011 to 24 Mar 2011 (#2011-64)
There are 7 messages totalling 513 lines in this issue.
Topics of the day:
1. DBS (5)
2. CLINICAL TRIAL RESULTS OF GENE THERAPY FOR PARKINSON'S DISEASE (2)
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Date: Wed, 23 Mar 2011 10:13:26 -0000
From: Nigel Harland <[log in to unmask]>
Subject: Re: DBS
Hi,
I had an experimental bi-lateral DBS targetting the PPN area of the brain in
Feb 2009, followed by a standard bi-lateral DBS in Jan 2010.
To cut a very long and complicated story short, here I am over 2 years later
and I have only just managed to get to a level which I would describe as
better than I was pre-ops.
On the plus side my tremor has disappeared, so has my dyskenesia, both of
which were causing me great discomfort,
on the negative side, I have not managed to reduce my Madopar ( sinemet
equivalent) dosage, I presently take 250mg 3 times day, which is more than
it was pre-op, and this has a very negative effect on my speech.
And I still fall over which is something that the experimental ppn dbs was
supposed to help.
Conclusion: I suppose that I am overall better than I was pre-op, but it has
been a long, hard journey.
Regards,
Nigel Harland
----- Original Message -----
From: "Rose Jardim" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, March 23, 2011 7:35 AM
Subject: Re: DBS
> Hi Janet,
>
> My Dad had DBS done at the end of November 2010. You need to have an
> assessment done in order to assess whether you qualify as a good candidate
> for the surgery. This involves a number of different opinions and tests.
>
> There is alot of information on the surgery itself on the Internet freely
> available and on line support groups.
>
> My Dad has finally settled down - this is after 3 months of healing. His
> reaction to the surgery was very bad. He became very aggressive, very
> confused and very ill. The Dr's did tell us to hang in and wait as it
> would all settle down. At the time we did not trust this opinion but alas
> 3 months later and he is doing very well.
>
> They are still adjusting the stimulator every week but his Parkinson
> symptoms have reduced significantly. He battles to walk still due to
> muscle damage but he is working on it.
>
> I wish you well with your research.
>
> Kind regards
>
>
>
>
> Rose Jardim
> Jardim Chartered Accountants
> (d) 011 894 2093 (m) 082 829 3014 (f) 086 568 3879
> [log in to unmask]
>
>
>
> -----Original Message-----
> From: gervase81 <[log in to unmask]>
> To: PARKINSN <[log in to unmask]>
> Sent: Wed, Mar 23, 2011 8:00 am
> Subject: DBS
>
>
> I am writing for some advise and support. I am 58 and have been
> iagnosed for 10 years. I was taking sinemet 4x day 25/250 and comtan
> 00 mg 4x. My doctor recently changed me to stalevo 200mg. 5x per day.
> y dyskiniseas on all the medications are getting bad and my on time is
> etting less and less. If lucky I might get 2 hours of on time between
> ach dose. When tired or under stress sometimes the medicine doesn't
> ven work. My doctor is recommending DBS but I don't know what to do.
> live on Long island outside of Manhattan. My question is, has anyone
> ad the surgery and did it help? What is everyone's experience with
> he surgery? I plan on getting a second opinion can anyone
> ecommend someone in this area? My movement disorder doctor and the
> urgeon are associated with North Shore University Hospital. By the
> ay, I am still working as a teacher but think I will have to give it
> p shortly.
> Janet
> ----------------------------------------------------------------------
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------------------------------
Date: Wed, 23 Mar 2011 16:21:48 -0700
From: Dan Halligan <[log in to unmask]>
Subject: Re: DBS
Perhaps I have lucked out but I had one side done in OCT and the other in
DEC and it has been a real Miracle for me. I think a lot matters on where
you have it done........danh@isomedia.com..
----- Original Message -----
From: <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, March 22, 2011 10:40 AM
Subject: DBS
>I am writing for some advise and support. I am 58 and have been diagnosed
>for 10 years. I was taking sinemet 4x day 25/250 and comtan 200 mg 4x. My
>doctor recently changed me to stalevo 200mg. 5x per day. My dyskiniseas on
>all the medications are getting bad and my on time is getting less and
>less. If lucky I might get 2 hours of on time between each dose. When
>tired or under stress sometimes the medicine doesn't even work. My doctor
>is recommending DBS but I don't know what to do. I live on Long island
>outside of Manhattan. My question is, has anyone had the surgery and did
>it help? What is everyone's experience with the surgery? I plan on
>getting a second opinion can anyone recommend someone in this area? My
>movement disorder doctor and the surgeon are associated with North Shore
>University Hospital. By the way, I am still working as a teacher but think
>I will have to give it up shortly.
>
> Janet
>
> ----------------------------------------------------------------------
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> mailto:[log in to unmask]
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------------------------------
Date: Wed, 23 Mar 2011 18:43:36 -0400
From: Hope <[log in to unmask]>
Subject: Re: DBS
Janet...My husband had DBS almot 3 yrs ago at North Shore Univ Hospital. We=
live in CT, but no hospital in CT did the surgery. His local neurologist h=
ighly recommended North Shore. His surgeon was Dr. Mogilner, and neurologis=
t was Dr. Michael Pourfar. I was impressed with both of them. He did have t=
o undergo a neuropsych evaluation before the surgery. He had it for similar=
reasons...medication not working and frequent episodes of complete freezin=
g. It did take some time to find the right settings for the DBS, but it gav=
e him back mobility. He no longer has freezing and his dyskinesias are mini=
mal. We are lucky now that there is a new neurologist/programmer who just c=
ame to our area, and she has really fine-tuned him. His speech is not so go=
od, but he had Pneumonia twice which seemed to affect his voice. Some of th=
e NY City hospitals do the surgery, but you are fortunate to live so close =
to North Shore. Best of luck if you go through with it. Discomfort and pain=
were minimal.
Hope
-----Original Message-----
From: gervase81 <[log in to unmask]>
To: PARKINSN <[log in to unmask]>
Sent: Wed, Mar 23, 2011 2:00 am
Subject: DBS
I am writing for some advise and support. I am 58 and have been=20
iagnosed for 10 years. I was taking sinemet 4x day 25/250 and comtan=20
00 mg 4x. My doctor recently changed me to stalevo 200mg. 5x per day. =20
y dyskiniseas on all the medications are getting bad and my on time is=20
etting less and less. If lucky I might get 2 hours of on time between=20
ach dose. When tired or under stress sometimes the medicine doesn't=20
ven work. My doctor is recommending DBS but I don't know what to do. =20
live on Long island outside of Manhattan. My question is, has anyone=20
ad the surgery and did it help? What is everyone's experience with=20
he surgery? I plan on getting a second opinion can anyone=20
ecommend someone in this area? My movement disorder doctor and the=20
urgeon are associated with North Shore University Hospital. By the=20
ay, I am still working as a teacher but think I will have to give it=20
p shortly.
Janet
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------------------------------
Date: Thu, 24 Mar 2011 00:03:32 +0000
From: A Phillips <[log in to unmask]>
Subject: Re: CLINICAL TRIAL RESULTS OF GENE THERAPY FOR PARKINSON'S DISEASE
I can imagine how one might measure 23% of constipation - but I'd rather no=
t !
=20
> Date: Mon=2C 21 Mar 2011 10:44:33 -0400
> From: [log in to unmask]
> Subject: Re: CLINICAL TRIAL RESULTS OF GENE THERAPY FOR PARKINSON'S DISEA=
SE
> To: [log in to unmask]
>=20
> >What an incredibly negative summary: "only" this=2C "only" that.
> >
> >I would happily undergo a treatment that would lead to a 23 percent
> >reduction in symptoms. It really wouldn't matter to me how much of that =
were
> >attributable to the surgical method.
> >
> >Kathleen
> >
> >
> >
> How does one measure 23% of something as variable as rigidity or=20
> tremor or constipation...... or pain?
> --=20
> Steve in VT
>=20
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:[log in to unmask]
.ca
> In the body of the message put: signoff parkinsn
=
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------------------------------
Date: Wed, 23 Mar 2011 08:08:25 -0500
From: Jackie Christensen <[log in to unmask]>
Subject: Re: DBS
At the risk of sounding self-serving, I am going to recommend my book, "Lif=
e
with a Battery-Operated Brain: A Patient's Guide to Deep Brain Stimulation
for Parkinson's Disease." It follows my journey from evaluation to living
with the device years after surgery. I surveyed 55 others who'd had DBS so
it includes info from their experiences too. I wrote it because there isn't
much written from a patient's perspective FOR patients. Anyway, I've gotten
a lot of good feedback that it's been helpful. YOu can probably find it at
your library to see if it would be helpful. If you want to buy it, you can
get it on Amazon or at www.lifewithbobbook.com. Your situation sounds very
similar to mine. DBS has been a godsend for me but is definitely not for
everyone. It also is NOT a cure and doesn't halt progression of the disease=
.
Another great resource is www.dbs-stn.org, a website run by The Parkinson
Alliance.
call me if you'd like: 612-325-0372.
Best wishes,
Jackie Hunt Christensen
On Tue, Mar 22, 2011 at 12:40 PM, <[log in to unmask]> wrote:
> I am writing for some advise and support. I am 58 and have been diagnosed
> for 10 years. I was taking sinemet 4x day 25/250 and comtan 200 mg 4x. My
> doctor recently changed me to stalevo 200mg. 5x per day. My dyskiniseas =
on
> all the medications are getting bad and my on time is getting less and le=
ss.
> If lucky I might get 2 hours of on time between each dose. When tired o=
r
> under stress sometimes the medicine doesn't even work. My doctor is
> recommending DBS but I don't know what to do. I live on Long island outs=
ide
> of Manhattan. My question is, has anyone had the surgery and did it help=
?
> What is everyone's experience with the surgery? I plan on getting =
a
> second opinion can anyone recommend someone in this area? My movement
> disorder doctor and the surgeon are associated with North Shore Universit=
y
> Hospital. By the way, I am still working as a teacher but think I will h=
ave
> to give it up shortly.
>
> Janet
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:
> [log in to unmask]
> In the body of the message put: signoff parkinsn
>
--=20
Jackie Hunt Christensen
Parkinson's disease and environmental health activist and author
cell phone: 612-325-0372
e-mail: [log in to unmask]
"What shall we choose? Violence or non violence? =E2=80=A6We have to choose=
knowing
that when we are violent to our enemies, we do violence to ourselves. When
we brutalize others, we brutalize ourselves. And eventually we run the risk
of becoming our oppressors.
-- Arundhati Roy
=E2=80=9CTo answer brutality with brutality is to admit one's moral and int=
ellectual
bankruptcy.=E2=80=9D
- - Gandhi
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------------------------------
Date: Thu, 24 Mar 2011 11:43:46 +0530
From: Moneesha Sharma <[log in to unmask]>
Subject: Re: CLINICAL TRIAL RESULTS OF GENE THERAPY FOR PARKINSON'S DISEASE
Amanda - LOL!!!!!
Moneesha
On 24 March 2011 05:33, A Phillips <[log in to unmask]> wrote:
> I can imagine how one might measure 23% of constipation - but I'd rather
> not !
>
----------------------------------------------------------------------
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------------------------------
Date: Thu, 24 Mar 2011 00:29:03 -0700
From: hilary blue <[log in to unmask]>
Subject: Re: DBS
i guess mine is a success story. i had the dbs surgery in april 2009, at
johns hopkins. the surgeon had performed about 800 before mine. i underwent
scrupulous testing to see if i was a suitable candidate. even before the
wires were connected,i noticed an incredible improvement. i got in and out
of bed without thinking about it! in november 2009,i moved to madison
wisconsin where i have my after care at the university of wisconsin medical
school where the medical care is outstanding. when i go for calibration,
which i can do as often as i feel the need, i spend as much as four hours
having my neurostimulator adjusted.i take 1/4 parcopa 4 to 6 times a day,and
every time it starts to creep up i get electronically adjusted. there are
some negative: my voice has become even quieter than it was. and i have poor
balance and i've fallen a couple of times. but it is worth it not to have
that incessant waggling of my upper body and head - feeling as tho my
brains were jiggling around in my skull.
this last monday i saw a cousin i haven't seen since pre dbs and he said he
couldn't believe i was the same person.
hilary
--- On Wed, 3/23/11, Nigel Harland <[log in to unmask]> wrote:
> From: Nigel Harland <[log in to unmask]>
> Subject: Re: DBS
> To: [log in to unmask]
> Date: Wednesday, March 23, 2011, 6:13 AM
> Hi,
> I had an experimental bi-lateral DBS targetting the PPN
> area of the brain in Feb 2009, followed by a standard
> bi-lateral DBS in Jan 2010.
> To cut a very long and complicated story short, here I am
> over 2 years later and I have only just managed to get to a
> level which I would describe as better than I was pre-ops.
> On the plus side my tremor has disappeared, so has my
> dyskenesia, both of which were causing me great discomfort,
> on the negative side, I have not managed to reduce my
> Madopar ( sinemet equivalent) dosage, I presently take 250mg
> 3 times day, which is more than it was pre-op, and this has
> a very negative effect on my speech.
> And I still fall over which is something that the
> experimental ppn dbs was supposed to help.
> Conclusion: I suppose that I am overall better than I was
> pre-op, but it has been a long, hard journey.
>
> Regards,
> Nigel Harland
>
>
> ----- Original Message ----- From: "Rose Jardim" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Wednesday, March 23, 2011 7:35 AM
> Subject: Re: DBS
>
>
> > Hi Janet,
> >
> > My Dad had DBS done at the end of November 2010.
> You need to have an assessment done in order to assess
> whether you qualify as a good candidate for the
> surgery. This involves a number of different opinions
> and tests.
> >
> > There is alot of information on the surgery itself on
> the Internet freely available and on line support groups.
> >
> > My Dad has finally settled down - this is after 3
> months of healing. His reaction to the surgery was
> very bad. He became very aggressive, very confused and
> very ill. The Dr's did tell us to hang in and wait as
> it would all settle down. At the time we did not trust
> this opinion but alas 3 months later and he is doing very
> well.
> >
> > They are still adjusting the stimulator every week but
> his Parkinson symptoms have reduced significantly. He
> battles to walk still due to muscle damage but he is working
> on it.
> >
> > I wish you well with your research.
> >
> > Kind regards
> >
> >
> >
> >
> > Rose Jardim
> > Jardim Chartered Accountants
> > (d) 011 894 2093 (m) 082 829 3014 (f) 086 568 3879
> > [log in to unmask]
> >
> >
> >
> > -----Original Message-----
> > From: gervase81 <[log in to unmask]>
> > To: PARKINSN <[log in to unmask]>
> > Sent: Wed, Mar 23, 2011 8:00 am
> > Subject: DBS
> >
> >
> > I am writing for some advise and support. I am 58 and
> have been
> > iagnosed for 10 years. I was taking sinemet 4x day
> 25/250 and comtan
> > 00 mg 4x. My doctor recently changed me to stalevo
> 200mg. 5x per day.
> > y dyskiniseas on all the medications are getting bad
> and my on time is
> > etting less and less. If lucky I might get 2
> hours of on time between
> > ach dose. When tired or under stress sometimes
> the medicine doesn't
> > ven work. My doctor is recommending DBS but I
> don't know what to do.
> > live on Long island outside of Manhattan. My
> question is, has anyone
> > ad the surgery and did it help? What is
> everyone's experience with
> > he surgery? I
> plan on getting a second opinion can
> anyone
> > ecommend someone in this area? My movement
> disorder doctor and the
> > urgeon are associated with North Shore University
> Hospital. By the
> > ay, I am still working as a teacher but think I will
> have to give it
> > p shortly.
> > Janet
> >
> ----------------------------------------------------------------------
> > o sign-off Parkinsn send a message to:
> > mailto:[log in to unmask]
> > n the body of the message put: signoff parkinsn
> >
> >
> >
> ----------------------------------------------------------------------
> > To sign-off Parkinsn send a message to:
> > mailto:[log in to unmask]
> > In the body of the message put: signoff parkinsn
>
> ----------------------------------------------------------------------
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>
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------------------------------
End of PARKINSN Digest - 23 Mar 2011 to 24 Mar 2011 (#2011-64)
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