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DBS??
Hi need ur input on this.... my family thinks I shud consider DBS and hopefully it will help me get a better quality of life... Personally I am petrified and am not sure if I shud do it.... I was diagnosed in 2004 when I was 36...will turn 44 at the end of this month... was on requip, withdrew from
Hi need ur input on this.... my family thinks I shud consider DBS and hopefully it will help me get a better quality of life... Personally I am petrified and am not sure if I shud do it.... I was diagnosed in 2004 when I was 36...will turn 44 at the end of this month... was on requip, withdrew from
SuKas
in
Cure Parkinson's
12 years ago
Does anyone suffer from an insatiable sweet tooth
Before I had DBS I had lost 50lbs since Dx. Then DBS and I stacked that 50 right back on and I can't get rid of it doesn't matter how hard I try. Even if I consume 1000 calories a day. Anyone else have similar problems and/or solutions. Thanks
Before I had DBS I had lost 50lbs since Dx. Then DBS and I stacked that 50 right back on and I can't get rid of it doesn't matter how hard I try. Even if I consume 1000 calories a day. Anyone else have similar problems and/or solutions. Thanks
NoSringsAussie
in
Cure Parkinson's
12 years ago
Does anyone know where I can go in the U.S.? For Urticarial vasculitis?
I have been sick for a long time. Was told I had UV just this past June. Before that it sounds like a lot of other stories I have read. I was diagnosed with eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they
I have been sick for a long time. Was told I had UV just this past June. Before that it sounds like a lot of other stories I have read. I was diagnosed with eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they
geoscott0292
in
Vasculitis UK
12 years ago
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MY KNEW NEUROLOGIST DIAGNOSIS. ???
HI seen a new neurologist THE DIAGNOSIS . Adanced parkinson's disease Bilateral STN DBS Dopamine Disregulation Syndrome Hyper Somnolence. Can any one tell me what she is talking about . your EXPORT.
HI seen a new neurologist THE DIAGNOSIS . Adanced parkinson's disease Bilateral STN DBS Dopamine Disregulation Syndrome Hyper Somnolence. Can any one tell me what she is talking about . your EXPORT.
export
in
Cure Parkinson's
12 years ago
Any one had Shingles while on Chemo ??
Would be doing well apart from the shingles that has set in over the last weekend ... 2nd chemo was on the 24th of Feb and apart from aching loads was feeling ok till problems last Thursday .. Blood count was ok on Friday but had dropped on Monday when the hospital did it again ..Hoping to be ok for
Would be doing well apart from the shingles that has set in over the last weekend ... 2nd chemo was on the 24th of Feb and apart from aching loads was feeling ok till problems last Thursday .. Blood count was ok on Friday but had dropped on Monday when the hospital did it again ..Hoping to be ok for
Jan76
in
My Ovacome
12 years ago
Newbie w/DBS
I'm not a newbie to PD, buy this is my first day (and first post) on this site.. I've was diagnosed w/PD about 15yrs ago, but, gratefully, it progressed very slowly... until about 3 yrs ago when I went downhill at an alarming rate. I had DBS surgery in 2009 and would be happy to share my experience
I'm not a newbie to PD, buy this is my first day (and first post) on this site.. I've was diagnosed w/PD about 15yrs ago, but, gratefully, it progressed very slowly... until about 3 yrs ago when I went downhill at an alarming rate. I had DBS surgery in 2009 and would be happy to share my experience
Thumbpick
in
Cure Parkinson's
12 years ago
Happy days ... re-implantation date in site
I can't remeber if I shared my story with this forum or not so to offset my absent mind here is the short version. I am 36 now. Symptoms started at 30, with Dx at 32 (my better half corrected me). C/L-Dopa etc was working ok until mid-2010 when it kept switching off on me. I was upto ~9 sinimet /day
I can't remeber if I shared my story with this forum or not so to offset my absent mind here is the short version. I am 36 now. Symptoms started at 30, with Dx at 32 (my better half corrected me). C/L-Dopa etc was working ok until mid-2010 when it kept switching off on me. I was upto ~9 sinimet /day
NoSringsAussie
in
Cure Parkinson's
12 years ago
23andme - an update on LRRK2
Studies are focused on whether decreased autophagy may make cells in the
brain
more susceptible to Parkinson’s-related cell
death
. Researchers want to know if this is a cause for the disease or simply an effect from it, said Fiske.
Studies are focused on whether decreased autophagy may make cells in the
brain
more susceptible to Parkinson’s-related cell
death
. Researchers want to know if this is a cause for the disease or simply an effect from it, said Fiske.
CPT_Helen
Administrator
in
Cure Parkinson's
12 years ago
To have or to have not
I have had PD (diagnosised) since 2002. In 2004, I was so bad that I taught my self how to write lefthanded, I walked with a cane and my right side had constant tremors. In the summer of 2004, I started having complications from one of the many medications I was taking. So it was determined that I would
I have had PD (diagnosised) since 2002. In 2004, I was so bad that I taught my self how to write lefthanded, I walked with a cane and my right side had constant tremors. In the summer of 2004, I started having complications from one of the many medications I was taking. So it was determined that I would
Sadiesadie
in
Cure Parkinson's
12 years ago
Poem 5Have had 3 procedures of DBS and awaiting programming
Remote control programming ( Turn me on) Just turn me on, For goodness sake, Turn me on I say, I’m not sure that I can wait very long; probably not another day. My head is throbbing from electrodes in my brain bouncing to and fro. And my chest muscles feel like I had a Boob Job with
Remote control programming ( Turn me on) Just turn me on, For goodness sake, Turn me on I say, I’m not sure that I can wait very long; probably not another day. My head is throbbing from electrodes in my brain bouncing to and fro. And my chest muscles feel like I had a Boob Job with
FifteenyearsPD
in
Cure Parkinson's
12 years ago
When all you have is luck... but then you loose hope for luck
I am one of the lucky ones amongst us ... PWP... but I am stuck in a rut of depression I can't shake. Dx'd (diagnosed) when I was 30, married with 2 kids. At the time I was traveling the world and racing ahead in my career. I thought all was well. In 2003 I ran a marathon by 2006 and
I am one of the lucky ones amongst us ... PWP... but I am stuck in a rut of depression I can't shake. Dx'd (diagnosed) when I was 30, married with 2 kids. At the time I was traveling the world and racing ahead in my career. I thought all was well. In 2003 I ran a marathon by 2006 and
NoSringsAussie
in
Cure Parkinson's
12 years ago
A little bit down
I've been feeling quite sad, but not depressed, the last week. I suppose part of it is feeling sorry for myself, but I have been sad that my Mum can't visit at the moment because her Menieres disease has started playing up again. I usually see her every second Monday but that won't happen any more until
I've been feeling quite sad, but not depressed, the last week. I suppose part of it is feeling sorry for myself, but I have been sad that my Mum can't visit at the moment because her Menieres disease has started playing up again. I usually see her every second Monday but that won't happen any more until
LittleClapham
in
Tourettes Action
12 years ago
Poem 4 - DBS - 1 procedure down and 2 to go
Poem 4 The day began before dawn but it wasn’t too bad, I want all to know. I can report - That’s one procedure down but still two more to go. By 9:00 AM I had a few extra holes in the top of my almost bald head. And by Noon, I was home comfy under the covers in my very own bed. The second
Poem 4 The day began before dawn but it wasn’t too bad, I want all to know. I can report - That’s one procedure down but still two more to go. By 9:00 AM I had a few extra holes in the top of my almost bald head. And by Noon, I was home comfy under the covers in my very own bed. The second
FifteenyearsPD
in
Cure Parkinson's
12 years ago
I was dx 9 years ago, had DBS last year. Recently all toes and fingers feel ridged and sometimes lose my grip. Is this a PD progression?
Pelley
in
Cure Parkinson's
12 years ago
DBS I WOULD LIKE TO HERE FROM ANY ONE WHO HAS ONE.
Hi would like to here from any one who has a DBS and know,s how many volts . Since you have had the DBS Has any one had the volt,s move . I would like to here about it, how ever small . yours EXPORT.
Hi would like to here from any one who has a DBS and know,s how many volts . Since you have had the DBS Has any one had the volt,s move . I would like to here about it, how ever small . yours EXPORT.
export
in
Cure Parkinson's
12 years ago
Letting Go-The daughter of a Parkinson's patient urges her Dad not to give up.
Letting Go 2011 My heart feels like it has broken in two at the realization that my dad is gone. I say the words to myself, and cringe at their impact: “My dad is gone, and he’s never coming back.” I think this as I am looking straight at him, sitting up in his chair, a familiar pose; right foot
Letting Go 2011 My heart feels like it has broken in two at the realization that my dad is gone. I say the words to myself, and cringe at their impact: “My dad is gone, and he’s never coming back.” I think this as I am looking straight at him, sitting up in his chair, a familiar pose; right foot
Maryt1967
in
Cure Parkinson's
12 years ago
HI DOES ANY ONE GET VERY BAD PAIN IN THE FACE ???
HI could any one tel me, who has had bad pain in the face. Face swollen My GP can see my face HAS ANY ONE WHO HAS A DBS HAD BAD PAIN WHICH THEY PUT DOWN TO THE DBS. CAN DBS GIVE YOU PAIN ??? PS Sorry about the grammar yours EXPORT.
HI could any one tel me, who has had bad pain in the face. Face swollen My GP can see my face HAS ANY ONE WHO HAS A DBS HAD BAD PAIN WHICH THEY PUT DOWN TO THE DBS. CAN DBS GIVE YOU PAIN ??? PS Sorry about the grammar yours EXPORT.
export
in
Cure Parkinson's
12 years ago
DBS
Dear forum members this was published in Lancet Neurology online this week. Lancet Neurol. 2012 Jan 10. [Epub ahead of print] Subthalamic deep brain stimulation with a constant-current device in Parkinson's disease: an open-label randomised controlled trial. Okun MS, Gallo BV, Mandybur G, Jagid
Dear forum members this was published in Lancet Neurology online this week. Lancet Neurol. 2012 Jan 10. [Epub ahead of print] Subthalamic deep brain stimulation with a constant-current device in Parkinson's disease: an open-label randomised controlled trial. Okun MS, Gallo BV, Mandybur G, Jagid
Hidden
in
Cure Parkinson's
12 years ago
A Good Article about DBS
Refers to treatment of psychiatric ailmentss using DBS but addresses the procedure for Parkies. The article was from the Wall St. Journal: http://online.wsj.com/article/SB10001424052970204555904577164813955136748.html A good 2 minute video is included free of charge :)
Refers to treatment of psychiatric ailmentss using DBS but addresses the procedure for Parkies. The article was from the Wall St. Journal: http://online.wsj.com/article/SB10001424052970204555904577164813955136748.html A good 2 minute video is included free of charge :)
Beachdog
in
Cure Parkinson's
12 years ago
Just a quick update
I thought I had done this a couple weeks ago but I can't seem to find my post anywhere... I had the visit to the rheumy and many other visits with other specialists. Seems all is good so far with a few suprises. My ANA was positive at 1:80 and speckeled pattern. I also tested positive for Lyme
I thought I had done this a couple weeks ago but I can't seem to find my post anywhere... I had the visit to the rheumy and many other visits with other specialists. Seems all is good so far with a few suprises. My ANA was positive at 1:80 and speckeled pattern. I also tested positive for Lyme
Hidden
in
Hughes Syndrome APS Forum
13 years ago
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