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Insomnia
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
1 month 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
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
2 months ago
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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
2 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
2 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
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
ibuprofen gel
Currently unable to contact a pharmacist or doctor. Does anyone know of a topical pain killer gel I can take whilst on anticoagulants? Apparently, ibuprofen gel is a no-no. Thanks Thanks everyone, pharmacist confirmed I can use Deep Heat, Heat Patches and or, paracetamol.
Currently unable to contact a pharmacist or doctor. Does anyone know of a topical pain killer gel I can take whilst on anticoagulants? Apparently, ibuprofen gel is a no-no. Thanks Thanks everyone, pharmacist confirmed I can use Deep Heat, Heat Patches and or, paracetamol.
Fight-the-good-fight
in
Atrial Fibrillation Support
9 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
3 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
3 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
AAV-GAD Gene Therapy
Did anyone hear of AAV-GAD gene therapy? I have a chance to get into a phase 1/2 trial, but information is somewhat limited. The original developing company went bankrupt, and a new company bought the rights to the therapy. The trails are being held at reputable sites like Yale, Columbia , and Cornell
Did anyone hear of AAV-GAD gene therapy? I have a chance to get into a phase 1/2 trial, but information is somewhat limited. The original developing company went bankrupt, and a new company bought the rights to the therapy. The trails are being held at reputable sites like Yale, Columbia , and Cornell
JohnP65
in
Cure Parkinson's
4 months ago
Understanding listening time at certain Db?
Hi guys, So, I'm trying to understand how things work with noise levels and HOW LONG I can listen for. I do gigs for 1 hour at a time approximately 8 times per week. These are nearly all solo gigs in care homes. For many years I did this with amplified acoustic instruments and what I thought to
Hi guys, So, I'm trying to understand how things work with noise levels and HOW LONG I can listen for. I do gigs for 1 hour at a time approximately 8 times per week. These are nearly all solo gigs in care homes. For many years I did this with amplified acoustic instruments and what I thought to
Fulltimemuso
in
Tinnitus UK
5 months ago
Has anyone tried “compassionate use” or “right to try” laws?
I’m getting pretty desperate here as hubby can no longer tolerate any dopamine therapy. He’s only 61, can barely speak or walk, and I have to help him with almost everything. There’s actually not much out there on the horizon, but considering trying it with Buntanetap or neflamapimod (for Lewy Body
I’m getting pretty desperate here as hubby can no longer tolerate any dopamine therapy. He’s only 61, can barely speak or walk, and I have to help him with almost everything. There’s actually not much out there on the horizon, but considering trying it with Buntanetap or neflamapimod (for Lewy Body
LeharLover62
in
Cure Parkinson's
5 months ago
Treatment for severe OCD
I've undergone surgery for my bad OCD. It helped quite well. I know the FDA has accepted the newer operation type, Deep Brain Stimulation, to offer us, OCD sufferers. I don't exactly know what it is said about DBS in FDA's guidelines, but they consider this surgery as an exception if no other method
I've undergone surgery for my bad OCD. It helped quite well. I know the FDA has accepted the newer operation type, Deep Brain Stimulation, to offer us, OCD sufferers. I don't exactly know what it is said about DBS in FDA's guidelines, but they consider this surgery as an exception if no other method
languageteacher
in
My OCD Community
5 months ago
Hormonal therapy ?
Hi, I was diagnosed with extended DCIS with ER+, PR+.I had a total mastectomy with a diep flap 2 weeks ago, My surgeon referred me to medical oncology for hormonal therapy. I am curious do I still need hormonal therapy as I already had a mastectomy, as far as cancer recurrence and preventing cancer
Hi, I was diagnosed with extended DCIS with ER+, PR+.I had a total mastectomy with a diep flap 2 weeks ago, My surgeon referred me to medical oncology for hormonal therapy. I am curious do I still need hormonal therapy as I already had a mastectomy, as far as cancer recurrence and preventing cancer
Rarlod
in
SHARE Breast Cancer Support
2 months ago
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