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Experiences with
Deep brain stimulation (DBS)
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About me
I have been approved after going through the testing for deep brain stimulation (
DBS
).
I have been approved after going through the testing for deep brain stimulation (
DBS
).
Megafone
in
Cure Parkinson's
1 year ago
Tremor Assessment
Has anyone had a tremor assessment prior to deep brain stimulation?
Has anyone had a tremor assessment prior to deep brain stimulation?
Ostap
in
Ataxia UK
6 months ago
Could Psychedelics help in Parkinsons Disease treatment?
- Deep brain stimulation - Psychedelics paired with
DBS
device calibration could optimize the effects of
DBS
by improving neural responses in reactivated motor/movement maps in the brain.
- Deep brain stimulation - Psychedelics paired with
DBS
device calibration could optimize the effects of
DBS
by improving neural responses in reactivated motor/movement maps in the brain.
pdpatient
in
Cure Parkinson's
1 year ago
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AbbVie’s Produodopa approved by SMC to treat Parkinson’s disease patients in Scotland
AbbVie’s Produodopa (foslevodopa-foscarbidopa) has been accepted by the Scottish Medicines Consortium (SMC) for use within NHS Scotland to treat advanced levodopa-responsive Parkinson’s disease (PD). PD patients with severe motor fluctuations and hyperkinesia or dyskinesia when previous available combinations
AbbVie’s Produodopa (foslevodopa-foscarbidopa) has been accepted by the Scottish Medicines Consortium (SMC) for use within NHS Scotland to treat advanced levodopa-responsive Parkinson’s disease (PD). PD patients with severe motor fluctuations and hyperkinesia or dyskinesia when previous available combinations
Farooqji
in
Cure Parkinson's
7 months ago
When will we reconcile with the fact that there is no cure now? Possibly never?
The only way a cure can be implemented is if there is titration down of the carbidopa levodopa and a titration up of the cure This can only happen under medical supervision and as long as the official direction is towards interventions like
dbs
or fuse, we can never win with pharmaceutical options
The only way a cure can be implemented is if there is titration down of the carbidopa levodopa and a titration up of the cure This can only happen under medical supervision and as long as the official direction is towards interventions like
dbs
or fuse, we can never win with pharmaceutical options
pdpatient
in
Cure Parkinson's
1 year ago
Rytary and Deep Brain Stimulation
The Dr wants him to consider
DBS
now . He said it has benefits but won’t last forever then back to square one. He doesn’t have tremors but has rigidity and freezing every day. What are your experiences with either one?
The Dr wants him to consider
DBS
now . He said it has benefits but won’t last forever then back to square one. He doesn’t have tremors but has rigidity and freezing every day. What are your experiences with either one?
Blueyedgirlky
in
Cure Parkinson's
1 year ago
B1 Therapy #Case 1 * Manuela Correia
They are Fernando and Manuela, both doctors, both retired, she has had Parkinson's disease for about 15 years, and had
DBS
(Deep Brain Stimulation) about 1 or 2 years ago, I can't remember exactly now. According to her, it improved some things but worsened others, particularly balance and gait.
They are Fernando and Manuela, both doctors, both retired, she has had Parkinson's disease for about 15 years, and had
DBS
(Deep Brain Stimulation) about 1 or 2 years ago, I can't remember exactly now. According to her, it improved some things but worsened others, particularly balance and gait.
Markbit
in
Cure Parkinson's
11 months ago
15-Year Subthalamic Deep Brain Stimulation outcome in a Parkinson's disease patient with Parkin gene mutation: a case report
In 2023, after more than 15 years of STN-
DBS
, motor symptoms and fluctuations are still well controlled. He reports mild dysphagia, mild depression, and multiple-domain MCI. His quality of life is better than before surgery, and he still reports a subjective significant improvement from STN-
DBS
.
In 2023, after more than 15 years of STN-
DBS
, motor symptoms and fluctuations are still well controlled. He reports mild dysphagia, mild depression, and multiple-domain MCI. His quality of life is better than before surgery, and he still reports a subjective significant improvement from STN-
DBS
.
Hidden
in
Cure Parkinson's
1 year ago
MDD Suffers: Avolition
Before my
DBS
surgery I was talking to my doc about it and she said yes there is a reason for that. Avolition. I never heard of it before but it made me feel less awful about myself and so wish I knew about it when so was suffering. Hopefully you find this helpful.
Before my
DBS
surgery I was talking to my doc about it and she said yes there is a reason for that. Avolition. I never heard of it before but it made me feel less awful about myself and so wish I knew about it when so was suffering. Hopefully you find this helpful.
jnelson66
in
Major Depressive Disorder (MDD) Support
1 year ago
Suggestions For Reducing 'Off' Time
I’m trying to hold off on the
DBS
surgery and hoping the gloves from Stanford will become available soon. "Update: the switch from Rytary 4 doses within a 24 hour period to 1 Rytary dose at night and 6 C/L doses during the day. The change was made because the day doses were less effective.
I’m trying to hold off on the
DBS
surgery and hoping the gloves from Stanford will become available soon. "Update: the switch from Rytary 4 doses within a 24 hour period to 1 Rytary dose at night and 6 C/L doses during the day. The change was made because the day doses were less effective.
tandolino
in
Cure Parkinson's
6 months ago
DBS number of surgeries vary so much from 1 to 3. Main reason surgeons say safer less complications. Is there any proof?
my
DBS
surgery was completed in one hospital stay. The majority of others was 2-3 hospital stays. Is there research to support that there are less complications?
my
DBS
surgery was completed in one hospital stay. The majority of others was 2-3 hospital stays. Is there research to support that there are less complications?
Lbi1608
in
Cure Parkinson's
1 year ago
Next NoSilverBullet webinar on 12th of February: Dr Raul Martinez on “The role of Focused Ultrasound in the management of Parkinson's”
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7.30pm London time on Monday, the 12th of February. Dr Raul Martinez Will be talking to us about “The role of Focused Ultrasound in the management of Parkinson's Disease”. Please use the Eventbrite link below
I am delighted to announce that our next NoSilverBullet Zoom webinar will be taking place at 7.30pm London time on Monday, the 12th of February. Dr Raul Martinez Will be talking to us about “The role of Focused Ultrasound in the management of Parkinson's Disease”. Please use the Eventbrite link below
Michel0220
in
Cure Parkinson's
8 months ago
B1 Therapy #Case 2 *Andreia Peres
They had become so severe that she began considering surgical intervention, known as
DBS
, to alleviate the disease's symptoms. About a month ago, she called me. She wanted information about my surgery, which was done using a different, much less invasive technique.
They had become so severe that she began considering surgical intervention, known as
DBS
, to alleviate the disease's symptoms. About a month ago, she called me. She wanted information about my surgery, which was done using a different, much less invasive technique.
Markbit
in
Cure Parkinson's
11 months ago
Need faster research on Neuro-modulation
We see the results of
DBS
and as any treatment one size is not going to fit everyone. There are supplements, vitamins, ideas related to changing the flora within the gut, several concepts of Neuro-modulation, Focus Ultrasound? Stem Cell, Angio-genesis and even Fecal transplant.
We see the results of
DBS
and as any treatment one size is not going to fit everyone. There are supplements, vitamins, ideas related to changing the flora within the gut, several concepts of Neuro-modulation, Focus Ultrasound? Stem Cell, Angio-genesis and even Fecal transplant.
Furch
in
Cure Parkinson's
1 year ago
dbs and massage chairs
THis might sound trival but I cannot find a good full massage chair which is pacemaker /
DBS
friendly. They all exclude people with these devices. Same goes for vibration plates. I get it, they both emit electromagnetic fields. So does my microwave and phone.
THis might sound trival but I cannot find a good full massage chair which is pacemaker /
DBS
friendly. They all exclude people with these devices. Same goes for vibration plates. I get it, they both emit electromagnetic fields. So does my microwave and phone.
Curious_Fred
in
Cure Parkinson's
1 year ago
Deep Brain Stimulation
Does anyone have recent personal experience of
DBS
for tremors? How successful was it as a treatment? Anecdotal information I can probably research for myself. Thank you. I have Cerabellar Ataxia.
Does anyone have recent personal experience of
DBS
for tremors? How successful was it as a treatment? Anecdotal information I can probably research for myself. Thank you. I have Cerabellar Ataxia.
Ostap
in
Ataxia UK
1 year ago
Video- a personal story
A moving video diary of one young man’s Parkinson’s journey to
DBS
. Take a look, it is well worth the time. https://m.youtube.com/watch?v=ZGcSGWenvA8
A moving video diary of one young man’s Parkinson’s journey to
DBS
. Take a look, it is well worth the time. https://m.youtube.com/watch?v=ZGcSGWenvA8
Buckholt
in
Cure Parkinson's
1 year ago
prebiotic collagen protein
Hi, I have searched the site re the above and most concerns relate to cost and getting collagen from diet rather than paying large sums for a packaged preparation. The main reason i want to take it is the hype regarding bloating, gut healing and digestive issues. It contains collagen peptides
Hi, I have searched the site re the above and most concerns relate to cost and getting collagen from diet rather than paying large sums for a packaged preparation. The main reason i want to take it is the hype regarding bloating, gut healing and digestive issues. It contains collagen peptides
paulgf54
in
CLL Support
27 days ago
DBS and cognition
Does having a diagnosis of "major neurocognitive disorder"-- a DSM diagnosis, usually disqualify someone for
DBS
? Is it dependent on other factors?
Does having a diagnosis of "major neurocognitive disorder"-- a DSM diagnosis, usually disqualify someone for
DBS
? Is it dependent on other factors?
Agnes1234
in
Cure Parkinson's
2 years ago
vimpat / lacosamide stopped fully working
the Vimpat stopped working to completely resolve my RLS. Recent MRIs showed multiple Tarlov cysts on my spine, which is possibly causing the left leg pain and movement. It is positional and separate from the RLS in both legs in my arms and body. I see a new neurosurgeon next week. I’ve had multiple
the Vimpat stopped working to completely resolve my RLS. Recent MRIs showed multiple Tarlov cysts on my spine, which is possibly causing the left leg pain and movement. It is positional and separate from the RLS in both legs in my arms and body. I see a new neurosurgeon next week. I’ve had multiple
SleeplessinNC
in
Restless Legs Syndrome
4 months ago
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