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Experiences with
D-bifunctional protein (DBP) deficiency
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Is DBS the miracle they say it is?
I've seen so many videos of people that have had DBS and it doesn't look like the cure-all they claim it to be. Most of the patients look like they've had a stroke or a slowness of reaction in mind and body. Why is there not more information on what can go wrong? OR am I expecting too much?There has
I've seen so many videos of people that have had DBS and it doesn't look like the cure-all they claim it to be. Most of the patients look like they've had a stroke or a slowness of reaction in mind and body. Why is there not more information on what can go wrong? OR am I expecting too much?There has
4809cats
in
Cure Parkinson's
11 years ago
THE SLEEP MACHINE CAPITAL IDEA capital
THE CONTENT OF WHAT IS WRITTEN IS WHAT MATTERS BE IT CAPITALS OR WHATEVER, CAPITALS ARE EASIER TO READ ,,,,,, THEY ARE BIGGER when your eyesight worsens S.F.A TO DO WITH SHOUTING,, AH SAID SWEET FANNY ADAMS BUT SOME PEOPLE if it says india on the tyres, INDIA IS WHERE THEYRE GOIN AS we
THE CONTENT OF WHAT IS WRITTEN IS WHAT MATTERS BE IT CAPITALS OR WHATEVER, CAPITALS ARE EASIER TO READ ,,,,,, THEY ARE BIGGER when your eyesight worsens S.F.A TO DO WITH SHOUTING,, AH SAID SWEET FANNY ADAMS BUT SOME PEOPLE if it says india on the tyres, INDIA IS WHERE THEYRE GOIN AS we
professor
in
Cure Parkinson's
11 years ago
Ferritin levels
As promised I can now tell you that after 3 months taking 2 x 200mg Ferrous Sulphate tablets my iron level has risen from 30 to normal levels (70 ish) and the doctor has said to just take one per day and see if it stays at this level. I do not get any leg cramps at night now so with this and the the
As promised I can now tell you that after 3 months taking 2 x 200mg Ferrous Sulphate tablets my iron level has risen from 30 to normal levels (70 ish) and the doctor has said to just take one per day and see if it stays at this level. I do not get any leg cramps at night now so with this and the the
beardedtwitch
in
Restless Legs Syndrome
12 years ago
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HAS ANYONE HAD D,B,S, TURN UP AND MADE THEM WORSE?
LAST FRIDAY AT THE WALTON CENTRE THEY TURN UP MY D,B,S AND I HAVE NOT BEEN RITE SINCE. . yours EXPORT .
LAST FRIDAY AT THE WALTON CENTRE THEY TURN UP MY D,B,S AND I HAVE NOT BEEN RITE SINCE. . yours EXPORT .
export
in
Cure Parkinson's
12 years ago
Anyone trying LDN or interested in it?
I have recently had an appointment with my neurologist and, as expected, he told me basically that the only way to achieve a reasonable quality of life into the future is to have DBS surgery. He spoke of the risks, that not everyone is suitable etc etc. And that was it. DBS or continue to steadily decline
I have recently had an appointment with my neurologist and, as expected, he told me basically that the only way to achieve a reasonable quality of life into the future is to have DBS surgery. He spoke of the risks, that not everyone is suitable etc etc. And that was it. DBS or continue to steadily decline
batwing7
in
Cure Parkinson's
12 years ago
I'm a carer to my wife who has difficult to control Epilepsy
My wife has had epilepsy since the age of 7.Lisa's epilepsy has been difficult to manage especially over more recent years.We've been to a few hospitals from our Local City to The National Hospital For Neurology & Neurosurgery in London & the Epilepsy Society at Chalfont St.Peter.
My wife has had epilepsy since the age of 7.Lisa's epilepsy has been difficult to manage especially over more recent years.We've been to a few hospitals from our Local City to The National Hospital For Neurology & Neurosurgery in London & the Epilepsy Society at Chalfont St.Peter.
Paul72
in
Epilepsy Society
12 years ago
7 days to dbs
I am scheduled for DBS - gpi on Dec. 7. I will be blogging my experience on my blog: http://christyscorner-chrismwalker.blogspot.com/ Feel free to visit my site and comment or post questions if you'd like.
I am scheduled for DBS - gpi on Dec. 7. I will be blogging my experience on my blog: http://christyscorner-chrismwalker.blogspot.com/ Feel free to visit my site and comment or post questions if you'd like.
chrismw
in
Cure Parkinson's
12 years ago
2 months after DBS implant
Well..... this has been a tough 2 months. First month and a half was waiting for the DBS surgery to heal and only half of the second was turning it on and learning how to manage it. That is still being learned now. I think it is going to be a lo-o-o-o-ng process. Leo is a very impatient man and that
Well..... this has been a tough 2 months. First month and a half was waiting for the DBS surgery to heal and only half of the second was turning it on and learning how to manage it. That is still being learned now. I think it is going to be a lo-o-o-o-ng process. Leo is a very impatient man and that
lmbanni
in
Cure Parkinson's
12 years ago
Anyone had DBS in Australia ?
faydee
in
Cure Parkinson's
12 years ago
To Anyone Who has Undergone DBS
How long did your programming take until you felt as if you were feeling that it was worthwhile . How often were you programmed ?
How long did your programming take until you felt as if you were feeling that it was worthwhile . How often were you programmed ?
faydee
in
Cure Parkinson's
12 years ago
IM HAVIBG TROUBLE POSTING,LOOKING 4 AN EXPERT IN DBS PROGRAMMING 2 LEADING DOCS HAVE GIVEN UP
HAD THE DBS AUG 2011,IT WAS SUCSESSFULL ALL IS IN PLACE
HAD THE DBS AUG 2011,IT WAS SUCSESSFULL ALL IS IN PLACE
supermom
in
Cure Parkinson's
12 years ago
DBS placement site
For those that have DBS, how many have had it placed in the subthalamic nucleus? How about the globus pallidis? Has there been any changes in anxiety or depression since the procedure?
For those that have DBS, how many have had it placed in the subthalamic nucleus? How about the globus pallidis? Has there been any changes in anxiety or depression since the procedure?
etterus
in
Cure Parkinson's
12 years ago
Did you know that only half of our disease is being treated?
It has long been known that we also lose a lot of our noradrenaline neurons too. Recent research shows that it may be that noradrenaline loss is primary cause of most PD symptoms including the motor ones. It also is looking like it is the locus of dyskinesia, So what does this mean for me? It means you
It has long been known that we also lose a lot of our noradrenaline neurons too. Recent research shows that it may be that noradrenaline loss is primary cause of most PD symptoms including the motor ones. It also is looking like it is the locus of dyskinesia, So what does this mean for me? It means you
Conductor71
in
Cure Parkinson's
12 years ago
DBS
Hi I was wondering if anybody has DBS at Salford Royal Infirmary{Hope Hospital} and if so would you be willing to talk over your experience with me.I am being considered for it. Thanks
Hi I was wondering if anybody has DBS at Salford Royal Infirmary{Hope Hospital} and if so would you be willing to talk over your experience with me.I am being considered for it. Thanks
Hidden
in
Cure Parkinson's
12 years ago
5am\3hrs sleep - feet and lower legs so uncomfortable. Is DBS the Answer?
Hi everyone,. I had a real good day today. Do not know why\how? Took my meds on time as usual did nothing different. Now its like a switch has gone off. I felt good until my last med dosage of the day. Next thing I felt so tired I could not move. Legs felt heavy and sore. My feet tightened up
Hi everyone,. I had a real good day today. Do not know why\how? Took my meds on time as usual did nothing different. Now its like a switch has gone off. I felt good until my last med dosage of the day. Next thing I felt so tired I could not move. Legs felt heavy and sore. My feet tightened up
Yogibear
in
Cure Parkinson's
12 years ago
If you've had dbs--what was your post surgical experience--how many days in hospital, how soon were you able to resume "normal" activities?
I meet with a surgeon next month to consult and schedule dbs. As a single mother, I need to know what i can expect after surgery. Thanks, Chris
I meet with a surgeon next month to consult and schedule dbs. As a single mother, I need to know what i can expect after surgery. Thanks, Chris
chrismw
in
Cure Parkinson's
12 years ago
Is a DBS operation even remotely possibly useful to treat RLS
SInce PD and RLS have some commonality in the form of Dopamine defficiency, I was wondering if a DBS sysrtem may be applicable for RLS too?
SInce PD and RLS have some commonality in the form of Dopamine defficiency, I was wondering if a DBS sysrtem may be applicable for RLS too?
Pete-1
in
Restless Legs Syndrome
12 years ago
Iron Deficiency
I was just wondering if there is any connection between RA or similar diseases and iron deficiency anaemia. I have my first appointment with my Rheumy on Monday, my GP suspecting I may have RA or something similar. When he did a blood test 2 months ago he said my red blood cell count was slightly
I was just wondering if there is any connection between RA or similar diseases and iron deficiency anaemia. I have my first appointment with my Rheumy on Monday, my GP suspecting I may have RA or something similar. When he did a blood test 2 months ago he said my red blood cell count was slightly
MAGSWAT
in
NRAS
12 years ago
Diagnosis to DBS (repost from www.youngandshaky.com)
In 5 days I will be probably be as nervous as I’ve ever been, even more than the night before my first court appearance as a practicing lawyer. I am quite sure however, that the events of 14 November are going to go infinitely better than that first outing in court (for the record it was bad, very bad
In 5 days I will be probably be as nervous as I’ve ever been, even more than the night before my first court appearance as a practicing lawyer. I am quite sure however, that the events of 14 November are going to go infinitely better than that first outing in court (for the record it was bad, very bad
shakingaj
in
Parkinson's New Zealand
12 years ago
Battery change
Has anyone thats had DBS had their battery changed yet? Having trouble with mine staying on see the surgeon tuesday . Just curious
Has anyone thats had DBS had their battery changed yet? Having trouble with mine staying on see the surgeon tuesday . Just curious
grammieof3
in
Cure Parkinson's
12 years ago
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