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Experiences with
Primary ciliary dyskinesia (PCD)
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Amantadine questions
For those who are taking amantadine or have taken this drug, a few questions... I'm on carbidopa/levodopa, entacapone and amantadine (100 mg 3x/day). Do you find it causes swelling in the feet, lower legs and hands? If you came off the drug, what was the upside and the downside? How did you come
For those who are taking amantadine or have taken this drug, a few questions... I'm on carbidopa/levodopa, entacapone and amantadine (100 mg 3x/day). Do you find it causes swelling in the feet, lower legs and hands? If you came off the drug, what was the upside and the downside? How did you come
Zardoz
in
Cure Parkinson's
7 months ago
Update on B1 dose increase after 4+ years
This was my original post on this topic: https://healthunlocked.com/cure-parkinsons/posts/149634530/increasing-my-dose-of-b1-after-4-years-and-7-months That was from June of 2023. I continued at the higher dose (2 grams/day) until the middle of August, then I started having symptom recurrence (brain
This was my original post on this topic: https://healthunlocked.com/cure-parkinsons/posts/149634530/increasing-my-dose-of-b1-after-4-years-and-7-months That was from June of 2023. I continued at the higher dose (2 grams/day) until the middle of August, then I started having symptom recurrence (brain
1LittleWillow
in
Cure Parkinson's
8 months ago
IPX203 shows sustained safety, efficacy in RISE-PD extension trial
Using IPX203, an extended-release formulation of carbidopa/levodopa (CD/LD), was associated with a sustained control of symptoms for Parkinson’s disease patients who participated in the open-label extension of the RISE-PD Phase 3 trial. Final results from the nine-month extension study (NCT03877510
Using IPX203, an extended-release formulation of carbidopa/levodopa (CD/LD), was associated with a sustained control of symptoms for Parkinson’s disease patients who participated in the open-label extension of the RISE-PD Phase 3 trial. Final results from the nine-month extension study (NCT03877510
Farooqji
in
Cure Parkinson's
8 months ago
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High-dose DHA and dyskinesia (my experience so far)
I'm always too busy lately to find time to write more than a sentence or two, but since Park Bear posted the info about Dr. Mischley's DHA protocol for dyskinesia, I decided I should make time to share my experience. I've been using mucuna plus Rx'd carbidopa since the end of September 2022 (and mucuna
I'm always too busy lately to find time to write more than a sentence or two, but since Park Bear posted the info about Dr. Mischley's DHA protocol for dyskinesia, I decided I should make time to share my experience. I've been using mucuna plus Rx'd carbidopa since the end of September 2022 (and mucuna
1LittleWillow
in
Cure Parkinson's
8 months ago
Laurie Mischley on Using High DHA Fish Oil to Reduce Levodopa-Induced Dyskinesia (Updated)
https://youtu.be/piDgzpD7oOQ?si=hZfSiPMEqAAg_Kbc Dr Mischley also recommends citicoline. I strongly discourage anyone who is not already using citicoline from starting, because: "patients treated with citicoline experienced a significant worsening 45 days after the medication was discontinued". For
https://youtu.be/piDgzpD7oOQ?si=hZfSiPMEqAAg_Kbc Dr Mischley also recommends citicoline. I strongly discourage anyone who is not already using citicoline from starting, because: "patients treated with citicoline experienced a significant worsening 45 days after the medication was discontinued". For
park_bear
in
Cure Parkinson's
8 months ago
park_bear made a very compelling argument for taking P5P (active B6)
park_bear made a very compelling argument for taking P5P (active B6)(a). My comments are: 1) When I tried taking (his recommended) 2 hours after C/L, I started walking side to side and the problem didn’t clear until I took my C/L again. 2) I am afraid to take P5P before bed because I did not sleep
park_bear made a very compelling argument for taking P5P (active B6)(a). My comments are: 1) When I tried taking (his recommended) 2 hours after C/L, I started walking side to side and the problem didn’t clear until I took my C/L again. 2) I am afraid to take P5P before bed because I did not sleep
Gcf51
in
Cure Parkinson's
8 months ago
Vitamin B6 Toxicity: Available Testing of B6 Plasma Level Does NOT Tell You What You Need to Know
[u]
Background
[/u]: Vitamin B6 participates as a coenzyme in over 100 different biochemical reactions. When it does so it is converted to the inactive form, pyridoxine. The body contains a recycling loop that restores the pyridoxine to the active form, P5P. Vitamin B2 is required for this process
[u]
Background
[/u]: Vitamin B6 participates as a coenzyme in over 100 different biochemical reactions. When it does so it is converted to the inactive form, pyridoxine. The body contains a recycling loop that restores the pyridoxine to the active form, P5P. Vitamin B2 is required for this process
park_bear
in
Cure Parkinson's
8 months ago
End Game
My wonderful mum has taken her last breath this evening. Whilst the last few weeks have seen days of deterioration and then stabilising, this final stage has been very quick. Two days in bed, unresponsive once we administered anticipatory medication because I wanted to be sure she wasn’t in pain or
My wonderful mum has taken her last breath this evening. Whilst the last few weeks have seen days of deterioration and then stabilising, this final stage has been very quick. Two days in bed, unresponsive once we administered anticipatory medication because I wanted to be sure she wasn’t in pain or
Willowden
in
PSP Association
8 months ago
Dyskinesia question
Is peak-dose dyskinesia essentially the same as wearing-off dyskinesia? In other words, are they both just a response to fluctuations in dopamine levels, and whether you experience one or the other (or both?) is just by chance, or is the difference in timing related to other factors? I'm sorry if that's
Is peak-dose dyskinesia essentially the same as wearing-off dyskinesia? In other words, are they both just a response to fluctuations in dopamine levels, and whether you experience one or the other (or both?) is just by chance, or is the difference in timing related to other factors? I'm sorry if that's
1LittleWillow
in
Cure Parkinson's
9 months ago
Drug induced Dyskinesia - some measures to control
Dear all, My mom is 59 years old, diagnosed Parkinson's two years back post COVID, takes the below set of medications currently. Levodopa/Carbidopa
CR
100/25 mg - 1/2-1/4-1/4-1/2 (6.30am-11am-3.30pm-6.30pm) Ropinirole
CR
2mg 1-0-0-1 (10:00am - 8.00pm) Safinamide 100 mg (1-0-0-1) (
Dear all, My mom is 59 years old, diagnosed Parkinson's two years back post COVID, takes the below set of medications currently. Levodopa/Carbidopa
CR
100/25 mg - 1/2-1/4-1/4-1/2 (6.30am-11am-3.30pm-6.30pm) Ropinirole
CR
2mg 1-0-0-1 (10:00am - 8.00pm) Safinamide 100 mg (1-0-0-1) (
gdineshnathan
in
Cure Parkinson's
10 months ago
Sinemet? Too much or not enough?
I’ve been on sinemet for 14 years and my average dose has been 1, sometimes 1 1/2 pills every 3 to 4 hours. I’m on no other medication, just the sinemet. I do use other things though like supplements and cbc and I stick to a strict diet and exercise plan, all geared towards the Parkinson’s and so far
I’ve been on sinemet for 14 years and my average dose has been 1, sometimes 1 1/2 pills every 3 to 4 hours. I’m on no other medication, just the sinemet. I do use other things though like supplements and cbc and I stick to a strict diet and exercise plan, all geared towards the Parkinson’s and so far
Mimi828
in
Cure Parkinson's
10 months ago
Fava Beans for Parkinson's?
This is a very good post that discusses the use of Fava Beans as a source of Levodopa and as a natural addition or adjunct to Sinemet. https://www.scienzavegetariana.it/nutrizione/favabeans.html
This is a very good post that discusses the use of Fava Beans as a source of Levodopa and as a natural addition or adjunct to Sinemet. https://www.scienzavegetariana.it/nutrizione/favabeans.html
pdpatient
in
Cure Parkinson's
10 months ago
Levadopa questions
Maybe someone knows or can point to scientific literature 1) Why should you take levadopa, if you have no tremor? I believe tremor is the main symptom relieved by taking levadopa. 2) Levadopa on average stops being efficient after 5-10 years. Why? This is strange as the brain should still need dopamine
Maybe someone knows or can point to scientific literature 1) Why should you take levadopa, if you have no tremor? I believe tremor is the main symptom relieved by taking levadopa. 2) Levadopa on average stops being efficient after 5-10 years. Why? This is strange as the brain should still need dopamine
Xauxatz
in
Cure Parkinson's
10 months ago
Has anybody found a way to reduce dyskinesia without Amantadine?
For many years, sinemet worked fine for me, but now I'm one of those people who gets dyskinesia from it. I've tried different combinations of amantadine and GoCovri (extended release). but it doesn't have much effect. So I take as little Sinemet as I can get away with. First dose at noon. There are
For many years, sinemet worked fine for me, but now I'm one of those people who gets dyskinesia from it. I've tried different combinations of amantadine and GoCovri (extended release). but it doesn't have much effect. So I take as little Sinemet as I can get away with. First dose at noon. There are
craigwharris
in
Cure Parkinson's
10 months ago
Mild aortic stenosis...is this normal?
A heart mumur was picked up when I was at the a&e back in June. Had an echocardiogram done September. Finally after trying to chase the a&e cardiologist who checked the echocardiogram he said my results were all normal. So I requested my results to check for myself as I feel rotten daily and it's says
A heart mumur was picked up when I was at the a&e back in June. Had an echocardiogram done September. Finally after trying to chase the a&e cardiologist who checked the echocardiogram he said my results were all normal. So I requested my results to check for myself as I feel rotten daily and it's says
Charts
in
Hughes Syndrome APS Forum
10 months ago
Levodopa end-of-dose dystonia successfully treated by neuromuscular taping: A case report
Most of us experience this havoc and its very cumbersome and disturbing. While searching on the topic I came across this article and found it worth sharing. Neuromuscular taping (NMT) is a physical therapy technique where an elastic drug free tape is applied without tension in order to lift the skin
Most of us experience this havoc and its very cumbersome and disturbing. While searching on the topic I came across this article and found it worth sharing. Neuromuscular taping (NMT) is a physical therapy technique where an elastic drug free tape is applied without tension in order to lift the skin
Farooqji
in
Cure Parkinson's
11 months ago
Ahlskog explains Dyskinesia
D’you remember the good ol’ days gang when we used to argue into the night about whether one should begin Levadopa earlier or later and whether Mucuna was better cause it didn’t cause dyskinesia and that the carbidopa was the agent that caused the dyskinesia etc. At some point, some wise person threw
D’you remember the good ol’ days gang when we used to argue into the night about whether one should begin Levadopa earlier or later and whether Mucuna was better cause it didn’t cause dyskinesia and that the carbidopa was the agent that caused the dyskinesia etc. At some point, some wise person threw
jeeves19
in
Cure Parkinson's
11 months ago
madopar vs sinemet
hi everyone! I’m planning to switch from sinemet 125 mg (levodopa carbidopa combination) immediate release to madopar Controlled release 125 mg (levodopa benserazide). Based on your experience, do you think it’s safe n is a good idea?
hi everyone! I’m planning to switch from sinemet 125 mg (levodopa carbidopa combination) immediate release to madopar Controlled release 125 mg (levodopa benserazide). Based on your experience, do you think it’s safe n is a good idea?
Divii
in
Cure Parkinson's
11 months ago
He Is Listening
I responded to Jeaner73, that, Yes my big battle is with that Simipex, last night 11-09-2023 we received a phone call from my current Neurologist, I'll be posting what that three quarters of an hour phone call has lead to. Sunday evenings sleep 10th September ’23 amounted to around 3 hours off and on
I responded to Jeaner73, that, Yes my big battle is with that Simipex, last night 11-09-2023 we received a phone call from my current Neurologist, I'll be posting what that three quarters of an hour phone call has lead to. Sunday evenings sleep 10th September ’23 amounted to around 3 hours off and on
72andnotout
in
Cure Parkinson's
11 months ago
Retina damage from red-light helmets (eg. Coronet?)
Has anyone here experienced retinal damage from using near-infrared helmet products which are positioned quite close to the eye? I have been feeling like my eyes are irritated and then I stumbled across the following scientific articles. Maybe I will need to stop exposing myself to any near infrared
Has anyone here experienced retinal damage from using near-infrared helmet products which are positioned quite close to the eye? I have been feeling like my eyes are irritated and then I stumbled across the following scientific articles. Maybe I will need to stop exposing myself to any near infrared
Discogs_discogs
in
Cure Parkinson's
11 months ago
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