Search
Search
About
Log in
Join
Experiences with
Persantin Retard
Posts
Communities
90 public posts
Filter results
parkinsons meds not working
My husband was diagnosed about 7 years ago. we delayed medication (trying endless supplements and life changes) as long as we could but a couple of years ago tried c/l he did not have any success and it made him nauseous ... tried Rytary about 6 months ago and since has been having depression
My husband was diagnosed about 7 years ago. we delayed medication (trying endless supplements and life changes) as long as we could but a couple of years ago tried c/l he did not have any success and it made him nauseous ... tried Rytary about 6 months ago and since has been having depression
LearningAllICan
in
Cure Parkinson's
4 days ago
Repost with more info: peripheral neuropathy
Thanks to Marion and Esperanto for helping me to provide more information. All questions answered here... (Original post question: my Movement Disorders Specialist (MDS) says foot numbness is not Pripheral Neuropathy, but rather a non motor symptom of Parkinson's??? ) I'm in my 10th year with PD symptoms
Thanks to Marion and Esperanto for helping me to provide more information. All questions answered here... (Original post question: my Movement Disorders Specialist (MDS) says foot numbness is not Pripheral Neuropathy, but rather a non motor symptom of Parkinson's??? ) I'm in my 10th year with PD symptoms
rebtar
in
Cure Parkinson's
2 months ago
My current usage of C/L
I take 1 25/100 and 2 rytary(48.75/195) at 8am, 3 rytary at 11am, 2 rytary at 2pm and 2 rytary at 5pm. I have very little off time. I was diagnosed two years ago at age 51 but it probably had Parkinson’s since I’ve been 40 years old. I was curious if I could get your opinion on if you guys think this
I take 1 25/100 and 2 rytary(48.75/195) at 8am, 3 rytary at 11am, 2 rytary at 2pm and 2 rytary at 5pm. I have very little off time. I was diagnosed two years ago at age 51 but it probably had Parkinson’s since I’ve been 40 years old. I was curious if I could get your opinion on if you guys think this
BPW1
in
Cure Parkinson's
2 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Nicotinamide supplement
Hello all. Thanks to all who’ve shared their wisdom over the years. I hope the following can help others in this forum. We recently started our PWP on Nicotinamide (500mg, A squared fm Amazon) and switched from B12 to a B complex (Pure Encapsulations fm Amazon). There has been an improvement in
Hello all. Thanks to all who’ve shared their wisdom over the years. I hope the following can help others in this forum. We recently started our PWP on Nicotinamide (500mg, A squared fm Amazon) and switched from B12 to a B complex (Pure Encapsulations fm Amazon). There has been an improvement in
haoster
in
Cure Parkinson's
2 months ago
Suggestions For Reducing 'Off' Time
I sent this message to my Neurologist from Mayo Clinic who works under Eric Ahlskog who wrote “The New Parkinson’s Disease Treatment Book”. I am looking for any suggestions regarding how I can reduce my ‘off’ times that are becoming more and more severe. I’m trying to hold off on the DBS surgery and
I sent this message to my Neurologist from Mayo Clinic who works under Eric Ahlskog who wrote “The New Parkinson’s Disease Treatment Book”. I am looking for any suggestions regarding how I can reduce my ‘off’ times that are becoming more and more severe. I’m trying to hold off on the DBS surgery and
tandolino
in
Cure Parkinson's
3 months ago
Seeking Rytary experience and feedback
I'm switching from sinemet to Rytary because of the fewer doses throughout the day. I'm struggling with the morning dose. It makes my off time worse and I end up taking 1 sinemet after 1 - 2 hours to relieve symptoms (primarily slow movement and rigidity). The Rytary seems to be effective after my
I'm switching from sinemet to Rytary because of the fewer doses throughout the day. I'm struggling with the morning dose. It makes my off time worse and I end up taking 1 sinemet after 1 - 2 hours to relieve symptoms (primarily slow movement and rigidity). The Rytary seems to be effective after my
al315
in
Cure Parkinson's
3 months ago
Sebum?
So PD causes seborrhea. And seborrhea causes pimples. I get pimples under the hair line. Coal Tar shampoo is the standard treatment for seborrhea. Using shampoo whole-body gets a bit pricey. Using a kitchen scrubber sponge as well might help. But because coal tar is very drying, it stimulates
So PD causes seborrhea. And seborrhea causes pimples. I get pimples under the hair line. Coal Tar shampoo is the standard treatment for seborrhea. Using shampoo whole-body gets a bit pricey. Using a kitchen scrubber sponge as well might help. But because coal tar is very drying, it stimulates
kaypeeoh
in
Cure Parkinson's
4 months ago
P128 Probiotic
My father just started taking P128 probiotic and we noticed a huge difference in his mental clarity and energy levels right away. I was wondering if anyone else has tried this one? This is pretty expensive but it seems to really help. He has had Parkinson's for 17 years so we are trying lots of new things
My father just started taking P128 probiotic and we noticed a huge difference in his mental clarity and energy levels right away. I was wondering if anyone else has tried this one? This is pretty expensive but it seems to really help. He has had Parkinson's for 17 years so we are trying lots of new things
KatQ
in
Cure Parkinson's
4 months ago
C/L immediate or controlled release?
I've been using Rytary first morning dose, then C/l CR plus some IR rest of day, and I'm having the issue that if I'm not very careful, and accept a fair amount of OFF time in the afternoon and evening, I get severe sleep interference (little to no sleep, even with sleep meds on board, and I know they're
I've been using Rytary first morning dose, then C/l CR plus some IR rest of day, and I'm having the issue that if I'm not very careful, and accept a fair amount of OFF time in the afternoon and evening, I get severe sleep interference (little to no sleep, even with sleep meds on board, and I know they're
rebtar
in
Cure Parkinson's
4 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
4 months ago
Experiences of return from Rytary to generic CR or IR
I’d like to hear experiences of switching back from Rytary to regular CR or IR? Why did you switch back?
I’d like to hear experiences of switching back from Rytary to regular CR or IR? Why did you switch back?
rebtar
in
Cure Parkinson's
4 months ago
IPX203 ;promising new PD drug?
I currently take rytary 4-5 times per day. My neuro thinks I may be a good candidate for this drug. In July 2023, thr drug manufacturer, Amneal,(if i understnd correctly) was working with FDA about safety of carbidopa in IPx203 https://parkinsonsnewstoday.com/ipx203-for-parkinsons-disease/ january
I currently take rytary 4-5 times per day. My neuro thinks I may be a good candidate for this drug. In July 2023, thr drug manufacturer, Amneal,(if i understnd correctly) was working with FDA about safety of carbidopa in IPx203 https://parkinsonsnewstoday.com/ipx203-for-parkinsons-disease/ january
Jmellano
in
Cure Parkinson's
4 months ago
Dominant hand tremor affecting elbow
I've been on Rytary for 3 years. I've had a tremor in my dominant hand for 5 years. Along with the tremor my elbow is being pulled toward my rib cage; adduction. I can push my elbow away; abduction no problem. But once I stop thinking about it my elbow moves back toward my ribs. I assume the tremor causes
I've been on Rytary for 3 years. I've had a tremor in my dominant hand for 5 years. Along with the tremor my elbow is being pulled toward my rib cage; adduction. I can push my elbow away; abduction no problem. But once I stop thinking about it my elbow moves back toward my ribs. I assume the tremor causes
kaypeeoh
in
Cure Parkinson's
5 months ago
Levadopa (Rytary) should I keep trying to cut back?
Hi all — I take a boatload of Rytary; I got kind of scared about it and asked the Dr if I could try cutting back. So I was trying the next level lower which is 100 mg below. Which seems like a lot but the higher is just awful in terms of dyskinesia and feeling bad. It just seems like too much. But
Hi all — I take a boatload of Rytary; I got kind of scared about it and asked the Dr if I could try cutting back. So I was trying the next level lower which is 100 mg below. Which seems like a lot but the higher is just awful in terms of dyskinesia and feeling bad. It just seems like too much. But
Godiv
in
Cure Parkinson's
5 months ago
Apathy, compulsiveness, and how to manage?
If I take enough c/l to feel motivated, I get compulsive, hyperfocused, forget to eat or follow my schedule, stay up too late, etc. This holiday season has disrupted my schedule and I've lost 5 lbs that l'd spent months trying to gain back. If I take less, I don't feel like doing much other than sitting
If I take enough c/l to feel motivated, I get compulsive, hyperfocused, forget to eat or follow my schedule, stay up too late, etc. This holiday season has disrupted my schedule and I've lost 5 lbs that l'd spent months trying to gain back. If I take less, I don't feel like doing much other than sitting
rebtar
in
Cure Parkinson's
6 months ago
High Bp again
Hi everyone, I’m on Zemtard and candesartan and everything had been quite stable until recently. It was suddenly flagged up that my bp was too high after I’d been to a doctors appointment. I’m now waiting input from the doctors after doing a few days of bp readings at home. Does anyone know why the
Hi everyone, I’m on Zemtard and candesartan and everything had been quite stable until recently. It was suddenly flagged up that my bp was too high after I’d been to a doctors appointment. I’m now waiting input from the doctors after doing a few days of bp readings at home. Does anyone know why the
Bluebell67
in
British Heart Foundation
6 months ago
low back pain
Hello Everyone : I may have posted this before. I don’t even remember because the pain in my lower back gets worse as time goes on and today is no exception. To begin with it seemed my Rytary helped but not anymore. I barely sleep because of it waking me. As I sit here waiting for my second dose of
Hello Everyone : I may have posted this before. I don’t even remember because the pain in my lower back gets worse as time goes on and today is no exception. To begin with it seemed my Rytary helped but not anymore. I barely sleep because of it waking me. As I sit here waiting for my second dose of
Ep0522
in
Cure Parkinson's
7 months ago
Checking in
Hello, everyone. After about 2 year break decided to check in on this platform. My dad is 88 now and has had Parkinson's for about 9 years. I was doing a lot of research when he got sick to find a magic cure/help for his condition. Started with Mucuna, which never helped with tremors, and B vitamin therapy
Hello, everyone. After about 2 year break decided to check in on this platform. My dad is 88 now and has had Parkinson's for about 9 years. I was doing a lot of research when he got sick to find a magic cure/help for his condition. Started with Mucuna, which never helped with tremors, and B vitamin therapy
texasL
in
Cure Parkinson's
8 months ago
Are there common side-effects to Rytary withdrawal?
I've been on Rytary for 2 years. Before that I had been on Sinemet for 4 years. I quit taking Rytary about a month ago. My only side effect seems to be insomnia. Maybe insomnia is the wrong word. Eventually I get tired and can sleep for a few hours. But I doubt it adds up to 8 hours over
I've been on Rytary for 2 years. Before that I had been on Sinemet for 4 years. I quit taking Rytary about a month ago. My only side effect seems to be insomnia. Maybe insomnia is the wrong word. Eventually I get tired and can sleep for a few hours. But I doubt it adds up to 8 hours over
kaypeeoh
in
Cure Parkinson's
8 months ago
High Dose CL ?
I am often puzzled by the high dose her neurologist/ movement specialist has her taking. I have not found anyone taking this high of dose: 8am: 25/100 CL x 3 11am: 25/100 CL x3 2pm: 25/100 CL x3 5pm: 25/100 CL x3 8pm: 25/100 CL x3 11pm: 25/100 CL x 1 but then a Rytary along with 3mg Melatonin.
I am often puzzled by the high dose her neurologist/ movement specialist has her taking. I have not found anyone taking this high of dose: 8am: 25/100 CL x 3 11am: 25/100 CL x3 2pm: 25/100 CL x3 5pm: 25/100 CL x3 8pm: 25/100 CL x3 11pm: 25/100 CL x 1 but then a Rytary along with 3mg Melatonin.
Furch
in
Cure Parkinson's
8 months ago
1
2
...
5
Next page
Filter results
Clear filters
Posted in
All communities
Cure Parkinson's
54 results
AF Association
9 results
British Heart Foundation
9 results
View top 10 communities
Sort by
Most Relevant
Newest