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The ParkinsonNet dream
ParkinsonNet is on a mission to improve the lives and guarantee the best possible care for those people impacted by Parkinson’s disease.
We are ParkinsonNet and would love to have your country on board of our global network.
ParkinsonNet was founded in 2004 in the Netherlands, were patient centered
ParkinsonNet is on a mission to improve the lives and guarantee the best possible care for those people impacted by Parkinson’s disease.
We are ParkinsonNet and would love to have your country on board of our global network.
ParkinsonNet was founded in 2004 in the Netherlands, were patient centered
Esperanto
in
Cure Parkinson's
1 year ago
dilemma ADT duration
apologies first for another longish verbose posting ! I am in a dilemma after my last oncology appointment - I have T2cN0M0 G9 locally contained PCa following a failed HIFU that was previously twice biopsied as G7. After a clear PSMA showing locally contained with no SV involvement I had 20x3Gy to
apologies first for another longish verbose posting ! I am in a dilemma after my last oncology appointment - I have T2cN0M0 G9 locally contained PCa following a failed HIFU that was previously twice biopsied as G7. After a clear PSMA showing locally contained with no SV involvement I had 20x3Gy to
SimMartin
in
Advanced Prostate Cancer
9 months ago
Cognitive behavioural therapy
Hi, I've posted here before so just a quick update - RLS for 47 years, tried DAs, Gabapentin, Pregabalin and on Tramadol at the moment. I've been through augmentation. Tramadol is helping a bit but my sleep pattern is all over the place and I keep falling asleep in the afternoon. My daughter has had
Hi, I've posted here before so just a quick update - RLS for 47 years, tried DAs, Gabapentin, Pregabalin and on Tramadol at the moment. I've been through augmentation. Tramadol is helping a bit but my sleep pattern is all over the place and I keep falling asleep in the afternoon. My daughter has had
restlessinlondon
in
Restless Legs Syndrome
9 months ago
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Red light therapy
Hi , I’ve read up a lot about red light therapy & have held back but now considering buying one. Just interested to know if any of you have bought one, how you have got on with it, re results, plus if so any recommendations. I know I have seen posts in the past where people have mentioned they use one
Hi , I’ve read up a lot about red light therapy & have held back but now considering buying one. Just interested to know if any of you have bought one, how you have got on with it, re results, plus if so any recommendations. I know I have seen posts in the past where people have mentioned they use one
Durrell
in
NRAS
1 year ago
Back pain
Apologies in advance for the long post After a bit of a battle with Rheumatology I had a Pet scan back in February that was suggestive of mild PMR They had previously diagnosed me with Fibromyalgia at the age of 51 as I was far to young for PMR and my blood work was unremarkable I was given 15mg of Pred
Apologies in advance for the long post After a bit of a battle with Rheumatology I had a Pet scan back in February that was suggestive of mild PMR They had previously diagnosed me with Fibromyalgia at the age of 51 as I was far to young for PMR and my blood work was unremarkable I was given 15mg of Pred
Northernnugget
in
PMRGCAuk
9 months ago
The effect of light exposure on insomnia and nocturnal movement in Parkinson's disease: an open label, retrospective, longitudinal study
The effect of light exposure on insomnia and nocturnal movement in Parkinson's disease: an open label, retrospective, longitudinal study 2018 https://sci-hub.ru/10.1016/j.sleep.2018.01.001
Abstract
Insomnia, hypersomnia and REM Sleep Behavior Disorder (RSBD) during sleep are major problems for
The effect of light exposure on insomnia and nocturnal movement in Parkinson's disease: an open label, retrospective, longitudinal study 2018 https://sci-hub.ru/10.1016/j.sleep.2018.01.001
Abstract
Insomnia, hypersomnia and REM Sleep Behavior Disorder (RSBD) during sleep are major problems for
Bolt_Upright
in
Cure Parkinson's
1 year ago
Casodex query
About to go back on ADT this month because my PSA is doubling every 4 months My Nader was 0.02 in April 2021 but recent bloods are showing 2:6 and I’m expecting 5 plus on bloods done yesterday I was told in March this year that I had incurable cancer after a clear PSMA scan on the previous February .
About to go back on ADT this month because my PSA is doubling every 4 months My Nader was 0.02 in April 2021 but recent bloods are showing 2:6 and I’m expecting 5 plus on bloods done yesterday I was told in March this year that I had incurable cancer after a clear PSMA scan on the previous February .
Walliam
in
Advanced Prostate Cancer
9 months ago
Constipation caused by pelvic floor dysfunction
I have been diagnosed with obstructive defecation syndrome (pelvic floor dysfunction) from a proctogram - I’ve been given physiotherapy and it hasn’t worked. I’ve asked to be referred for biofeedback and my doctor says they won’t do anything else. Does anyone have any advice? It’s severely impacting
I have been diagnosed with obstructive defecation syndrome (pelvic floor dysfunction) from a proctogram - I’ve been given physiotherapy and it hasn’t worked. I’ve asked to be referred for biofeedback and my doctor says they won’t do anything else. Does anyone have any advice? It’s severely impacting
Pinkcrystal5
in
Pelvic Pain Support Network
1 year ago
Radiation for Salvage Treatment
I am about to start salvage treatment after a failed surgery and a rising PSA value of 0.1. However, I would like to know if weeks of external radiation with ADT, is the best treatment option here. The idea of blindly radiating pelvic area with a re-recurrence a few years later does not appeal to me.
I am about to start salvage treatment after a failed surgery and a rising PSA value of 0.1. However, I would like to know if weeks of external radiation with ADT, is the best treatment option here. The idea of blindly radiating pelvic area with a re-recurrence a few years later does not appeal to me.
Rams91
in
Prostate Cancer Network
9 months ago
Help with blood test results please
Hello I have a phone appointment on Monday to discuss these results with my GP, but in order to arm myself with the right info, can anyone help me to interpret the attached please? Background: I am 44 years old and started HRT about 5 months ago, having had symptoms for the last few years. I am on
Hello I have a phone appointment on Monday to discuss these results with my GP, but in order to arm myself with the right info, can anyone help me to interpret the attached please? Background: I am 44 years old and started HRT about 5 months ago, having had symptoms for the last few years. I am on
Jellybabyhead
in
Thyroid UK
9 months ago
Help with blood test results
Hello I am calling tomorrow to discuss these results with my GP, but in order to arm myself with the right info, can anyone help me to interpret the attached please? Background: I am 44 years old and started HRT about 5 months ago. I am on the mini pill (Detrogel) and at the time of blood draw (yesterday
Hello I am calling tomorrow to discuss these results with my GP, but in order to arm myself with the right info, can anyone help me to interpret the attached please? Background: I am 44 years old and started HRT about 5 months ago. I am on the mini pill (Detrogel) and at the time of blood draw (yesterday
Jellybabyhead
in
Menopause and Perimenopause Support
9 months ago
Vagifem causing flare ups?
I've had a hysterectomy and excision and am currently in surgical menopause, about a year ago started with a return of pain/symptoms. MRI earlier this year showed what seems to be the remains of my RV nodule growing about a cm deep into the rectal wall, plus another nodule elsewhere on the bowel. I've
I've had a hysterectomy and excision and am currently in surgical menopause, about a year ago started with a return of pain/symptoms. MRI earlier this year showed what seems to be the remains of my RV nodule growing about a cm deep into the rectal wall, plus another nodule elsewhere on the bowel. I've
Hidden
in
Endometriosis UK
9 months ago
Update on my father
I just wanted to post a quick update on my father. He has metastatic castrate resistant prostate cancer. He’s been on ADT - Eligard shots every 3 months and prednisone + zytiga everyday. It’s challenging as I work with him and see all the ins and outs of his behaviour while on those meds. He remains
I just wanted to post a quick update on my father. He has metastatic castrate resistant prostate cancer. He’s been on ADT - Eligard shots every 3 months and prednisone + zytiga everyday. It’s challenging as I work with him and see all the ins and outs of his behaviour while on those meds. He remains
jberg22
in
Advanced Prostate Cancer
9 months ago
Anyone with PSP-PAGF
I am from India and new to this association. My husband age 69 was diagnosed (mis?) as Parkinson's patient in 2019. He was having speech issues and slow movements Last month, he started freezing and can only walk with baby steps. Consulted a movement disorder specialist who diagnosed it as PSP-PAGF.
I am from India and new to this association. My husband age 69 was diagnosed (mis?) as Parkinson's patient in 2019. He was having speech issues and slow movements Last month, he started freezing and can only walk with baby steps. Consulted a movement disorder specialist who diagnosed it as PSP-PAGF.
Sharsuk
in
PSP Association
1 year ago
Body in constant flare like symptoms....
Hi, I've had fibro since 2010, diagnosed 2011, I was managing quite well and managed to hold a part time job for 17 yrs. Unfortunately I lost my job due to pain, swelling and loss of function in my left leg, would have moment of no control, been back and forward for hospital and gp appt. I do have oesteoarthritis
Hi, I've had fibro since 2010, diagnosed 2011, I was managing quite well and managed to hold a part time job for 17 yrs. Unfortunately I lost my job due to pain, swelling and loss of function in my left leg, would have moment of no control, been back and forward for hospital and gp appt. I do have oesteoarthritis
Perdi05
in
Fibromyalgia Action UK
9 months ago
Met with Radiation Oncologist
Met with radiation oncologist today. His recommendation was Cyberknife, no ADT. He did say that if I felt more comfortable with surgery that there was an "amazing" surgeon within 100 miles that he would recommend. I liked the guy, he has been doing Cyberknife for years and felt that with a co-existing
Met with radiation oncologist today. His recommendation was Cyberknife, no ADT. He did say that if I felt more comfortable with surgery that there was an "amazing" surgeon within 100 miles that he would recommend. I liked the guy, he has been doing Cyberknife for years and felt that with a co-existing
Chasbearcat999
in
Prostate Cancer Network
9 months ago
Appreciate feedback on my going forward plan & timing
After 3 years from robotic RP with a 5+4 Gleason score, my PSA moved from zero to .099 ng/mL. See my profile for more data.
August
– Meetings with expert Dr. Collins (Georgetown). Wants to move fast with 5 days for 5 weeks radiation with six months of ADT (Orgovyx) due to my high Gleason from
After 3 years from robotic RP with a 5+4 Gleason score, my PSA moved from zero to .099 ng/mL. See my profile for more data.
August
– Meetings with expert Dr. Collins (Georgetown). Wants to move fast with 5 days for 5 weeks radiation with six months of ADT (Orgovyx) due to my high Gleason from
Murk
in
Prostate Cancer Network
9 months ago
Firmagon vs Lupron vs Orgovyxx
Is there any difference in cost/effectiveness? My urologist wanted me to start hormone therapy with Firmagon, but my radiation oncologist wanted me to go on Orgovyxx instead...any thoughts? Thank you!
Is there any difference in cost/effectiveness? My urologist wanted me to start hormone therapy with Firmagon, but my radiation oncologist wanted me to go on Orgovyxx instead...any thoughts? Thank you!
SilverSeppi
in
Advanced Prostate Cancer
9 months ago
Revisiting Intermittent Therapy in Metastatic Prostate Cancer
The A-Dream Phase 2 trial is taking a second look at intermittent therapy for mHSPCa. In the study they hope to answer the question 1. Can intermittent therapy (a break from treatment) for high responders (PSA < .2 over 18-24 mos) on ADT+ARPi be more effective than continuous ADT (the current standard
The A-Dream Phase 2 trial is taking a second look at intermittent therapy for mHSPCa. In the study they hope to answer the question 1. Can intermittent therapy (a break from treatment) for high responders (PSA < .2 over 18-24 mos) on ADT+ARPi be more effective than continuous ADT (the current standard
skiingfiend
in
Advanced Prostate Cancer
9 months ago
Speech therapy advice
Hello My brother Chris had a severe brain injury 5 months ago. He’s currently in rehab (NHS) where he’s been for 2 months as it took time to get a suitable rehab placement. Chris’ injury was on the left side of his head. Initially, he couldn’t move his right arm but quickly got mobility and some
Hello My brother Chris had a severe brain injury 5 months ago. He’s currently in rehab (NHS) where he’s been for 2 months as it took time to get a suitable rehab placement. Chris’ injury was on the left side of his head. Initially, he couldn’t move his right arm but quickly got mobility and some
HopeForChris
in
Headway
1 year ago
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