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Experiences with
D-bifunctional protein (DBP) deficiency
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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
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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
Is there a better solution than DBS?
wynn7
in
Cure Parkinson's
12 years ago
With new DBS patients, how often should you get 'programming' from your Dr?
hardtop03
in
Cure Parkinson's
12 years ago
Found this guys DBS journey
Check out this video on YouTube: http://www.youtube.com/watch?v=FFExLXXIoIk&feature=youtube_gdata_player Sent from my iPad
Check out this video on YouTube: http://www.youtube.com/watch?v=FFExLXXIoIk&feature=youtube_gdata_player Sent from my iPad
Hidden
in
Cure Parkinson's
12 years ago
Another Week on the Road
BUCKET LIST TOUR CONTINUES Not much touring this week on the Bucket List tour. Lovely Lori has been suffering from a cold and toothache and I was nursing her a bit and catching up on learning more about my disease. I did meet John, a fellow PDer who had DBS this past summer. He looks good and feels
BUCKET LIST TOUR CONTINUES Not much touring this week on the Bucket List tour. Lovely Lori has been suffering from a cold and toothache and I was nursing her a bit and catching up on learning more about my disease. I did meet John, a fellow PDer who had DBS this past summer. He looks good and feels
wordworks2001
in
Cure Parkinson's
12 years ago
My husband is 3 weeks post DBS surgery!!! And doing GREAT!!! :-)
My hubby got his DBS on Oct. 1. We were very confident in our doctor and we are thankful for all the prayers going to God on his behalf! We live in the USA, Texas and his Social Security Advantage insurance plan paid soooo well for it!!! Thanks to our Lord!! If anyone has any questions about how it went
My hubby got his DBS on Oct. 1. We were very confident in our doctor and we are thankful for all the prayers going to God on his behalf! We live in the USA, Texas and his Social Security Advantage insurance plan paid soooo well for it!!! Thanks to our Lord!! If anyone has any questions about how it went
lmbanni
in
Cure Parkinson's
12 years ago
Anyone know how long the waiting list is for DBS at the National Hospital for Neurology and Neurosurgery, Queen Square, London?
Hi everyone, hope you are all okay. I had my consultation this week. I was told that the only option for me was DBS as medication is not working. Next step is to meet with the DBS Team at Queen Square. I am now left in a situation where I am simply trying to manage this rather precarious situation
Hi everyone, hope you are all okay. I had my consultation this week. I was told that the only option for me was DBS as medication is not working. Next step is to meet with the DBS Team at Queen Square. I am now left in a situation where I am simply trying to manage this rather precarious situation
Yogibear
in
Cure Parkinson's
12 years ago
For my friends in the US...Is anyone on Disability?
How does one qualify to get on it? I tried to apply myself and was rejected..Also does disability also take care of medical insurance? How does it work? Any helpand pointer wud be appreciated... I will be going in for DBS on Nov15th
How does one qualify to get on it? I tried to apply myself and was rejected..Also does disability also take care of medical insurance? How does it work? Any helpand pointer wud be appreciated... I will be going in for DBS on Nov15th
SuKas
in
Cure Parkinson's
12 years ago
New DBS Method .
Less-Invasive Method of Brain Stimulation Helps Patients With Parkinson's Disease ScienceDaily (Oct. 16, 2012) — Electrical stimulation using extradural electrodes -- placed underneath the skull but not implanted in the brain -- is a safe approach with meaningful benefits for patients with Parkinson's
Less-Invasive Method of Brain Stimulation Helps Patients With Parkinson's Disease ScienceDaily (Oct. 16, 2012) — Electrical stimulation using extradural electrodes -- placed underneath the skull but not implanted in the brain -- is a safe approach with meaningful benefits for patients with Parkinson's
Hidden
in
Cure Parkinson's
12 years ago
Considering DBS. If you have had it, your input is greatly appreciated
My neurologist broached the subject of DBS surgery for the first time last visit. My wearing off periods are getting longer and I do get some pretty bad tremors during those times. I have a few friends who have had the surgery. One has had problems with infection and they have replaced his wires a couple
My neurologist broached the subject of DBS surgery for the first time last visit. My wearing off periods are getting longer and I do get some pretty bad tremors during those times. I have a few friends who have had the surgery. One has had problems with infection and they have replaced his wires a couple
wordworks2001
in
Cure Parkinson's
12 years ago
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