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Brain arteriovenous malformation (AVM)
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i know this is going to sound weird but…….
Guys. Ever since I had the DBS I’ve had rhinitis, itchy eyes, itchy skin. I assumed that I needed to hoover up etc, get my dogs bedding changed etc. I’ve done all of these but I’m still symptomatic. I thought to myself the other day: this started pretty soon after the DBS. So: could I be allergic to
Guys. Ever since I had the DBS I’ve had rhinitis, itchy eyes, itchy skin. I assumed that I needed to hoover up etc, get my dogs bedding changed etc. I’ve done all of these but I’m still symptomatic. I thought to myself the other day: this started pretty soon after the DBS. So: could I be allergic to
jeeves19
in
Cure Parkinson's
11 months ago
B1 Therapy #Case 2 *Andreia Peres
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
Markbit
in
Cure Parkinson's
11 months ago
Personal insights into late stage PD thoughts
Gaslighting...(Don't gaslight yourself, dont allow others to gaslight you). (Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. It is an insidious form of manipulation and psychological control. Victims
Gaslighting...(Don't gaslight yourself, dont allow others to gaslight you). (Gaslighting is a form of psychological abuse in which a person or group causes someone to question their own sanity, memories, or perception of reality. It is an insidious form of manipulation and psychological control. Victims
beehive23
in
Cure Parkinson's
11 months ago
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B1 Therapy #Case 1 * Manuela Correia
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
I've decided to write a series of posts about B1 therapy for a group of people I'm following. Most of them I met through Young Parkies Portugal, or they reached out to me on social media asking for guidance in applying this therapy. Some of these texts had already been published on social media, and
Markbit
in
Cure Parkinson's
11 months ago
November Webinar
We hope you will join us and ask your questions during the November Live Webinar with Dr Yusuf (JP) Saleeby with a presentation on LDN, Long Covid and Lyme Disease Update. Register here https://form.ldnresearchtrust.org/232812335487964 for a $5 donation.
We hope you will join us and ask your questions during the November Live Webinar with Dr Yusuf (JP) Saleeby with a presentation on LDN, Long Covid and Lyme Disease Update. Register here https://form.ldnresearchtrust.org/232812335487964 for a $5 donation.
Shewulf
Administrator
in
LDN Research Trust
11 months ago
B1 and anti anxiety pills
My HWP, diagnosed 30 years ago, DBS 18 years ago, has been going through a very difficult period with his PD for the past 3 months. His knees keep collapsing and his 'offs' have become very bad. I am having to lift him from his falls and helping him get out of his chair, bed etc. This has been a real
My HWP, diagnosed 30 years ago, DBS 18 years ago, has been going through a very difficult period with his PD for the past 3 months. His knees keep collapsing and his 'offs' have become very bad. I am having to lift him from his falls and helping him get out of his chair, bed etc. This has been a real
JeanieBeanie
in
Cure Parkinson's
11 months ago
Tetanus booster while on prednisone?
Has anyone had the tetanus booster (I'm due for a 10-year one) while on prednisone? Am I correct in understanding that we should not have "live" vaccines? And I can't find any information that mentions if it's live or not. Thank you so much for any insights!
Has anyone had the tetanus booster (I'm due for a 10-year one) while on prednisone? Am I correct in understanding that we should not have "live" vaccines? And I can't find any information that mentions if it's live or not. Thank you so much for any insights!
Spartans1
in
PMRGCAuk
1 year ago
Let's share your DBS settings
I start first. Vendor: Medtronics Right STN: 4.5 - 4.9v STN (2+1 interleaving) Left STN :3.6v STN double mono polar Frequency: 125hz pulse width: 90 μs
I start first. Vendor: Medtronics Right STN: 4.5 - 4.9v STN (2+1 interleaving) Left STN :3.6v STN double mono polar Frequency: 125hz pulse width: 90 μs
limcheeese22
in
Cure Parkinson's
1 year ago
Shingles jab
I may be the last person to know this, but.......having been told to avoid the shingles jab as it contained a live virus, I've just been told that the NHS no longer use live virus vaccines, so it's safe for MPN patients. I have now had my first shot👍
I may be the last person to know this, but.......having been told to avoid the shingles jab as it contained a live virus, I've just been told that the NHS no longer use live virus vaccines, so it's safe for MPN patients. I have now had my first shot👍
Ovingite
in
MPN Voice
1 year ago
swelling around DBS battery 5 weeks after surgery
It’s been 5 weeks since my battery placement surgery and when I woke up this morning my battery site is puffy. The incision has healed and looks fine. No redness or fever either. I’m not sure what caused this. I called my surgeon and sent pictures and they are going to see me Monday morning. But they
It’s been 5 weeks since my battery placement surgery and when I woke up this morning my battery site is puffy. The incision has healed and looks fine. No redness or fever either. I’m not sure what caused this. I called my surgeon and sent pictures and they are going to see me Monday morning. But they
Nurse7
in
Cure Parkinson's
1 year ago
Shingles vaccine
Hi, has anyone had the shingles vaccine, I have had shingles 5 times over the years and have been advised to have the vaccine, bit worried about possible reaction?Thanx
Hi, has anyone had the shingles vaccine, I have had shingles 5 times over the years and have been advised to have the vaccine, bit worried about possible reaction?Thanx
Den73
in
PMRGCAuk
1 year ago
DBS energy
Hi guys. I keep reading about people who -post DBS - went and ran a marathon etc and appear to have gallons of energy. Should I be feeling this? No, I don’t think that they’ve got the program right yet but running a marathon? Ay ay ay
Hi guys. I keep reading about people who -post DBS - went and ran a marathon etc and appear to have gallons of energy. Should I be feeling this? No, I don’t think that they’ve got the program right yet but running a marathon? Ay ay ay
jeeves19
in
Cure Parkinson's
1 year ago
Shingles vaccine?
I unknowingly (until after) had shingles in March 2023 which I believe, triggered first episode of Afib. Now thinking about having the vaccine, concerned that it will trigger Afib. What are people's experiences of having the vaccine? Do I need it yet. Maybe still have antibodies in my system? Will
I unknowingly (until after) had shingles in March 2023 which I believe, triggered first episode of Afib. Now thinking about having the vaccine, concerned that it will trigger Afib. What are people's experiences of having the vaccine? Do I need it yet. Maybe still have antibodies in my system? Will
sunlovah
in
Atrial Fibrillation Support
1 year ago
DBS journey
Hey Gang. I thought I’d post something as I’m aware that a few of you are following my story with a mind to seeing how it fits into your own life? So, turned on Friday, felt awful Saturday (as you know) better Sunday. But yesterday and today I had awful issues with my voice. The programmer had asked
Hey Gang. I thought I’d post something as I’m aware that a few of you are following my story with a mind to seeing how it fits into your own life? So, turned on Friday, felt awful Saturday (as you know) better Sunday. But yesterday and today I had awful issues with my voice. The programmer had asked
jeeves19
in
Cure Parkinson's
1 year ago
Foslevodopa-Foscarbidopa (Vyalev)
Sign of a new delivery system for levodopa coming down the pike? or potential to replace DBS? https://www.canjhealthtechnol.ca/index.php/cjht/article/download/SR0768/1444?inline=1
Sign of a new delivery system for levodopa coming down the pike? or potential to replace DBS? https://www.canjhealthtechnol.ca/index.php/cjht/article/download/SR0768/1444?inline=1
bcjlynne
in
Cure Parkinson's
1 year ago
DBS switch on news.
So gang. I was really off when I turned up, not having had meds for 4/5 hours? Whole body dystonia, plain awful. The switch on was good in terms of removing this dystonia but I think I was expecting a brand new body! Ali noticed a big difference when they dialled everything in. . So, my bradykinesia
So gang. I was really off when I turned up, not having had meds for 4/5 hours? Whole body dystonia, plain awful. The switch on was good in terms of removing this dystonia but I think I was expecting a brand new body! Ali noticed a big difference when they dialled everything in. . So, my bradykinesia
jeeves19
in
Cure Parkinson's
1 year ago
tetanus booster and Covid vaccine
Hello I had a tetanus booster yesterday and I asked my GP if it was ok to get Covid vaccine next Thursday. He said he didn’t know and to check with primary care. When I saw the nurse she said it’s fine as both are inactivated. Does anyone know about this ? I tried finding out but haven’t managed to
Hello I had a tetanus booster yesterday and I asked my GP if it was ok to get Covid vaccine next Thursday. He said he didn’t know and to check with primary care. When I saw the nurse she said it’s fine as both are inactivated. Does anyone know about this ? I tried finding out but haven’t managed to
Mozart150
in
NRAS
1 year ago
"BREAKTHROUGH" device approved by FDA for PD
"The U.S. Food and Drug Administration (FDA) has granted breakthrough device designation to Inbrain Neuroelectronics’ neural platform for its potential to provide more effective deep brain stimulation (DBS) as an [i]
add-on Parkinson’s treatment.
[/i]" "The platform — called Intelligent Network
"The U.S. Food and Drug Administration (FDA) has granted breakthrough device designation to Inbrain Neuroelectronics’ neural platform for its potential to provide more effective deep brain stimulation (DBS) as an [i]
add-on Parkinson’s treatment.
[/i]" "The platform — called Intelligent Network
PDWarrior1900
in
Cure Parkinson's
1 year ago
anti anxiety with Eliquis
I started having a fibs in 2007 after having Lyme disease and also possibly too much thyroid medication. I’ve managed it all these years and after I turned 65 2 1/2 years ago, the doctor started pressuring me to go on blood thinner because of stroke risk. my score is only a two and it’s a gray area for
I started having a fibs in 2007 after having Lyme disease and also possibly too much thyroid medication. I’ve managed it all these years and after I turned 65 2 1/2 years ago, the doctor started pressuring me to go on blood thinner because of stroke risk. my score is only a two and it’s a gray area for
Fblue
in
Atrial Fibrillation Support
1 year ago
Shingles vaccine
Has anyone on methotrexate and infliximab had the shingles vaccine ? Do you have to get it every year ?
Has anyone on methotrexate and infliximab had the shingles vaccine ? Do you have to get it every year ?
Grounsel
in
NRAS
1 year ago
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