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Hello, I was diagnosed PD when i was 37, now I'm 46 years old. 5 months ago i was DBS. After surgery, things did not go bad, but not as good I have expected. On March 7th i was reajusted the neurostimulator by my neourologist. On March 15th i started HDT Protocol, 50 mg sublingual on alternative days
Hello, I was diagnosed PD when i was 37, now I'm 46 years old. 5 months ago i was DBS. After surgery, things did not go bad, but not as good I have expected. On March 7th i was reajusted the neurostimulator by my neourologist. On March 15th i started HDT Protocol, 50 mg sublingual on alternative days
carlosgarcia2048
in
Cure Parkinson's
2 months ago
Spinal Cord Stimulation & PD
Interesting article. https://spectrum.ieee.org/parkinsons-disease
Interesting article. https://spectrum.ieee.org/parkinsons-disease
House2
in
Cure Parkinson's
6 months ago
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
2 months ago
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Thanks for the replies to my previous post
Thanks for your replies to my first post everyone. Comforting to know I'm not alone in feeling overwhelmed by this, but I'm blown away by how many people are enduring this and find ectopics really debilitating. It's so sad that our feeling are dismissed as unimportant by people who have no idea what
Thanks for your replies to my first post everyone. Comforting to know I'm not alone in feeling overwhelmed by this, but I'm blown away by how many people are enduring this and find ectopics really debilitating. It's so sad that our feeling are dismissed as unimportant by people who have no idea what
dragonsinger
in
British Heart Foundation
2 months ago
pain?
Anybody else have pain on waking, from hips and legs up to arms & shoulders--not explained by exercise or lack thereof? Can barely hobble about the house to get my meds and feed the cat. Sometimes it helps to tighten all the muscles to form an upright posture--but as soon as I loosen them to move, it
Anybody else have pain on waking, from hips and legs up to arms & shoulders--not explained by exercise or lack thereof? Can barely hobble about the house to get my meds and feed the cat. Sometimes it helps to tighten all the muscles to form an upright posture--but as soon as I loosen them to move, it
ottercat
in
Cure Parkinson's
3 months ago
The problematic 2nd dose of the day
Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as
Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as
jeeves19
in
Cure Parkinson's
3 months ago
DBS awake or under general anesthesia
I've been told that for my DBS operation I will be under general anesthesia. I'm just wondering what others have experienced. I like the idea of a good sleep and waking to find the operation over but I was under the impression that when done awake the patient can indicate when the probes are correctly
I've been told that for my DBS operation I will be under general anesthesia. I'm just wondering what others have experienced. I like the idea of a good sleep and waking to find the operation over but I was under the impression that when done awake the patient can indicate when the probes are correctly
gingerj
in
Cure Parkinson's
3 months ago
Vagal a fib
I listened to a cardiologist on utube. He mentioned vagal a fib. Does any one what this is? It seems to be a younger cohort but I presume it comes with the usual meds. How can you find out if you have it? I seem to be able to stop a fib attacks with vagal manoeuvres and sometimes my a fib is brought
I listened to a cardiologist on utube. He mentioned vagal a fib. Does any one what this is? It seems to be a younger cohort but I presume it comes with the usual meds. How can you find out if you have it? I seem to be able to stop a fib attacks with vagal manoeuvres and sometimes my a fib is brought
TillyBoss
in
AF Association
3 months ago
Collagen powder and increased stiffness?
Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but
Recently, my husband experienced a distressing episode of extreme stiffness. He described it as a sensation of having someone squeeze him at the base of his brain (he had DBS in 2022), causing him to feel extremely stiff in his head, shoulders, neck and arms. In general, stiffness is his issue, but
1rocketman
in
Cure Parkinson's
3 months ago
#1 Symptom Reducer
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
I am a PwP and 56 years old. I'm a bit overwhelmed with all of the information, sometimes conflicting, out there regarding treatments and supplements. I am trying to determine what to try first. I am a predominantly tremor parkie. I exercise regularly & eat well. I take levadopa 25/100 4x a day.
staceysack
in
Cure Parkinson's
3 months ago
DBS??
I’m seriously considering DBS. Would love some feedback from people who have had it done.
I’m seriously considering DBS. Would love some feedback from people who have had it done.
CostaVal
in
Cure Parkinson's
3 months ago
Restless Leg Syndrome, neuromodulation..
Treatment was well tolerated, and no adverse events were reported. Our case series shows a potential role for self-administered taVNS in patients with severe pharmacoresistant RLS. Hartley S, Bao G, Russo A, Zagdoun M, Chevallier S, Lofaso F, Leotard A, Azabou E. Self-administered non-invasive vagus
Treatment was well tolerated, and no adverse events were reported. Our case series shows a potential role for self-administered taVNS in patients with severe pharmacoresistant RLS. Hartley S, Bao G, Russo A, Zagdoun M, Chevallier S, Lofaso F, Leotard A, Azabou E. Self-administered non-invasive vagus
House2
in
Restless Legs Syndrome
5 months ago
addicted to C/L?
i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if
i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if
limcheeese22
in
Cure Parkinson's
3 months ago
DBS. Did it improve your life as much as you hoped?
Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved
Well I feel the DBS conveyor belt moving again, bringing me closer to the surgery date. I have an appointment with Professor Silverdale in a couple of weeks and I have questions to ask. Can anyone reading this who has had the surgery give me their honest thoughts as to whether the DBS surgery has improved
gingerj
in
Cure Parkinson's
3 months ago
A new approach for treatment of subthreshold bipolar disorders: Targeted high dose levothyroxine+repetitive TMS for mitochondrial treatment
A very interesting paper. Difficult to grab any individual bits for discussion or introduction. The whole paper isn't very long. Even if bipolar disorders are not themselves of much direct interest, it might be worth a quick read because it discusses the control group as well and their ability to tolerate
A very interesting paper. Difficult to grab any individual bits for discussion or introduction. The whole paper isn't very long. Even if bipolar disorders are not themselves of much direct interest, it might be worth a quick read because it discusses the control group as well and their ability to tolerate
helvella
Thyroid UK
in
Thyroid UK
4 months ago
I’m scheduled to have DBS surgery February 29 - if you have had DBS, is there anything you wish you‘d known beforehand?
I want to prepare mentally (and physically) for the surgery, and would appreciate any input from members of this community who have had the experience of DBS surgery. Thank you in advance. Wayne
I want to prepare mentally (and physically) for the surgery, and would appreciate any input from members of this community who have had the experience of DBS surgery. Thank you in advance. Wayne
Megafone
in
Cure Parkinson's
4 months ago
Kinder , Gentler and harmless Alternative of DBS
Seeking a kinder, gentler alternative, researchers from Korea's Yonsei University created minuscule magnets tagged with antibodies. The devices are known as nanoscale magnetic force actuators, or m-Torquers. These m-Torquers were injected into the subthalamic nucleus of mice with early- and late-stage
Seeking a kinder, gentler alternative, researchers from Korea's Yonsei University created minuscule magnets tagged with antibodies. The devices are known as nanoscale magnetic force actuators, or m-Torquers. These m-Torquers were injected into the subthalamic nucleus of mice with early- and late-stage
Farooqji
in
Cure Parkinson's
4 months 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
4 months ago
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory, a key cognitive process often impaired in PD. https://academic.oup.com/brain/advance-article-abstract/doi/10.1093/brain/awad433/7513222?login=false
Does deep brain stimulation help with cognitive problems in Parkinson's disease? Theta frequency STN-DBS boosts working memory, a key cognitive process often impaired in PD. https://academic.oup.com/brain/advance-article-abstract/doi/10.1093/brain/awad433/7513222?login=false
nednedned
in
Cure Parkinson's
4 months ago
Vagal Nerve stimulation (video)
... https://www.youtube.com/watch?v=5ba5zyMo9VY
... https://www.youtube.com/watch?v=5ba5zyMo9VY
House2
in
Cure Parkinson's
5 months ago
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