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Personal experience with vitamin b1, thiamine?
I was diagnosed with young onset PD IN 2010, at age 40. Then,10 years later, I found I was losing my balance and re-diagnosed as Parkinsons plus, only they don't know what the plus is. The suspicion is ataxia, of which there are over 300 varieties. All of this to say I have nothing to lose. I am trying
I was diagnosed with young onset PD IN 2010, at age 40. Then,10 years later, I found I was losing my balance and re-diagnosed as Parkinsons plus, only they don't know what the plus is. The suspicion is ataxia, of which there are over 300 varieties. All of this to say I have nothing to lose. I am trying
eemove
in
Cure Parkinson's
4 years ago
The need for sinemet/dopamine in general.
I would suggest given responses / dialogue ive seen here that if you have been on sinemet every 3rhs 24/7 ish and you can stop with little or no effect.....you might want to question an idiopathic PD diagnosis. cheers...........hang tough.
I would suggest given responses / dialogue ive seen here that if you have been on sinemet every 3rhs 24/7 ish and you can stop with little or no effect.....you might want to question an idiopathic PD diagnosis. cheers...........hang tough.
beehive23
in
Cure Parkinson's
4 years ago
Why do I fall forwards?
[i] I left Wyoming three weeks ago. Now I'm in our new home in Connecticut. [/i] I spent the past few days hiking amid myriad 300-year old fences. Three years ago I found there was a problem while attempting a marathon. My balance was off to the point of bending at the waist and falling on my hands
[i] I left Wyoming three weeks ago. Now I'm in our new home in Connecticut. [/i] I spent the past few days hiking amid myriad 300-year old fences. Three years ago I found there was a problem while attempting a marathon. My balance was off to the point of bending at the waist and falling on my hands
kaypeeoh
in
Cure Parkinson's
4 years ago
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Balancing diabetes with PD
Between a rock and a hard place. My husband is 26 years into PD. He is now also pre diabetic. How can you balance what foods to eat. Too many carbs turn into sugar and too much protein stops PD meds working properly. He tried Metformin but felt it was affecting his PD. The more carbs he has the more
Between a rock and a hard place. My husband is 26 years into PD. He is now also pre diabetic. How can you balance what foods to eat. Too many carbs turn into sugar and too much protein stops PD meds working properly. He tried Metformin but felt it was affecting his PD. The more carbs he has the more
JeanieBeanie
in
Cure Parkinson's
4 years ago
CHEAP SINEMET CR OR EXPENSIVE RYTARY. WHICH WORKS BEST FOR YOU?
Hi Friends, my MDS is about to switch me to expensive Rytary.I keep wondering why Rytary instead of a cheaper Sinemet CR.If you had an experience with this two drugs as a patient or a caregiver,please your input will be appreciated.I am currently having off periods due to generic Sinemet,not working
Hi Friends, my MDS is about to switch me to expensive Rytary.I keep wondering why Rytary instead of a cheaper Sinemet CR.If you had an experience with this two drugs as a patient or a caregiver,please your input will be appreciated.I am currently having off periods due to generic Sinemet,not working
OREOLU
in
Cure Parkinson's
4 years ago
RYTARY OR SINEMET, WHICH WORKS BEST AND CAUSES MILD OR NO DYSKINESIA OR DYSTONIA?
Hi Friends, Diagnosed as a Yopd patient. I need your honest opinion as regards Rytary and Sinemet,I am roughly 4yrs on this PD journey,and have been on sinemet with less severe side effects,until recently the ''on period'' of Sinemet decreased to 2hrs instead off initial 4 or 3hrs.I then had to dose
Hi Friends, Diagnosed as a Yopd patient. I need your honest opinion as regards Rytary and Sinemet,I am roughly 4yrs on this PD journey,and have been on sinemet with less severe side effects,until recently the ''on period'' of Sinemet decreased to 2hrs instead off initial 4 or 3hrs.I then had to dose
OREOLU
in
Cure Parkinson's
4 years ago
Stalevo
My doctor just changed my prescription from Sinemet to Stalevo. Does anybody have experience taking Stalevo? I am afraid to have hallucinations with Stalevo.
My doctor just changed my prescription from Sinemet to Stalevo. Does anybody have experience taking Stalevo? I am afraid to have hallucinations with Stalevo.
nourilo
in
Cure Parkinson's
4 years ago
DYSKINESIA vs DYSTONIA
i've been wondering after reading many posts here, whether I know the difference between dystonia and dyskinesia. My PD was preceded by the onset of vocal cord dystonia which means the vocal cords are very tight which makes it very difficult to speak. I get severe abdominal wall muscle tightness when
i've been wondering after reading many posts here, whether I know the difference between dystonia and dyskinesia. My PD was preceded by the onset of vocal cord dystonia which means the vocal cords are very tight which makes it very difficult to speak. I get severe abdominal wall muscle tightness when
Grasss1973
in
Cure Parkinson's
4 years ago
HOW DO I SWITCH TO RYTARY? PLEASE HELP.
Hi Friends, I am here again asking for your kind support.For you,the experienced pwp. I will like to know how to transition from sinemet IR to Rytary. I am currently on 25/100mg ,2 and half tablet at 8am,12noon,4;00pm,8;00pm and one tablet at 11;00pm bedtime. I just got Rytary 36.25mg/145mg,and my Doctor
Hi Friends, I am here again asking for your kind support.For you,the experienced pwp. I will like to know how to transition from sinemet IR to Rytary. I am currently on 25/100mg ,2 and half tablet at 8am,12noon,4;00pm,8;00pm and one tablet at 11;00pm bedtime. I just got Rytary 36.25mg/145mg,and my Doctor
OREOLU
in
Cure Parkinson's
4 years ago
Constipation - Parkinsons, Sinemet or both ? Natural ways of treating constipation?
Mom has a G tube so it limits sometimes what we can give her in terms of fibre , even though she is getting completely organic food with no preservatives etc . All clean ingredients. I might start massaging her tummy with some essential oils , dont want to give her too many laxatives. Any suggestions
Mom has a G tube so it limits sometimes what we can give her in terms of fibre , even though she is getting completely organic food with no preservatives etc . All clean ingredients. I might start massaging her tummy with some essential oils , dont want to give her too many laxatives. Any suggestions
mymomhaspd
in
Cure Parkinson's
4 years ago
Medications for cbd
What meds do you take for CBD..my mum takes sinemet 4 times a day ..betmega in the morning and stilnocht sleeping tablet at night...mirap at night and lexepro for anxiety...her right hand has totally closed into a fist..cannot open it without her roaring in pain..someone mentioned botox??..she constantly
What meds do you take for CBD..my mum takes sinemet 4 times a day ..betmega in the morning and stilnocht sleeping tablet at night...mirap at night and lexepro for anxiety...her right hand has totally closed into a fist..cannot open it without her roaring in pain..someone mentioned botox??..she constantly
Cianodude
in
PSP Association
4 years ago
Explain festination please
Can someone explain festination? Last winter I would walk on a hilly half-mile track while wearing a backpack with a 30# weight. On snowy inclines I'd get an urge to turn around or at least walk backwards. At a Zoom examination I explained this sign and the doc responded that it's festination.
Can someone explain festination? Last winter I would walk on a hilly half-mile track while wearing a backpack with a 30# weight. On snowy inclines I'd get an urge to turn around or at least walk backwards. At a Zoom examination I explained this sign and the doc responded that it's festination.
kaypeeoh
in
Cure Parkinson's
4 years ago
Magnesium chloride - dosing
I started using magnesium chloride gel two weeks ago, every night, along with my meds; it works great and sleep has improved to 5-6 hours. But I need up to 8 hours. How soon can you reapply the gel? Is it risky to “overdose on magnesium”?
I started using magnesium chloride gel two weeks ago, every night, along with my meds; it works great and sleep has improved to 5-6 hours. But I need up to 8 hours. How soon can you reapply the gel? Is it risky to “overdose on magnesium”?
ScribblerCLT
in
Restless Legs Syndrome
4 years ago
Any other PD people out there...your major PD symptom is toes curling up on both feet
Hi to everyone. I haven't signed in for awhile, so I hope all is well with everyone. The last time I signed in, I was going in for my first colonoscopy (April/May of 2019)...and I am happy to say that I got a clean bill of health for my colon and don't have to go back in for colonoscopy for 10 years
Hi to everyone. I haven't signed in for awhile, so I hope all is well with everyone. The last time I signed in, I was going in for my first colonoscopy (April/May of 2019)...and I am happy to say that I got a clean bill of health for my colon and don't have to go back in for colonoscopy for 10 years
willason
in
Cure Parkinson's
4 years ago
STILL HAVING "OFF PERIODS" PLEASE HELP
Hi Friends, I am in the group of pwp that takes alot of sinemet over a 24hrs period.I would say 11 and half tablets of 25/100mg.I recently got some support on the thread to increase from 2 tablets every 4hrs to 2 and half tablets every 4hrs.This ncrease actually helped,but whenever I get stressed out
Hi Friends, I am in the group of pwp that takes alot of sinemet over a 24hrs period.I would say 11 and half tablets of 25/100mg.I recently got some support on the thread to increase from 2 tablets every 4hrs to 2 and half tablets every 4hrs.This ncrease actually helped,but whenever I get stressed out
OREOLU
in
Cure Parkinson's
4 years ago
My experience with DBS (Deep Brain Stimulation) Surgery
First, a little about me. I am 47 years old and was diagnosed early onset PD at 35 or so. I grew up on a farm in a small town in central FL. I played sports my whole life. Baseball, Wrestling, Softball, and even a little football. I married my high school sweetheart, have a great job, and two sons
First, a little about me. I am 47 years old and was diagnosed early onset PD at 35 or so. I grew up on a farm in a small town in central FL. I played sports my whole life. Baseball, Wrestling, Softball, and even a little football. I married my high school sweetheart, have a great job, and two sons
JeffroC
in
Cure Parkinson's
4 years ago
Is anyone taking Apokyn for Off episodes that occur with Parkinson's disease?
Would like to know if anyone in this forum is taking Apokyn . Apokyn is used to help prevent Parkinson's symptoms during Off periods when the Sinemet has worn off. p
Would like to know if anyone in this forum is taking Apokyn . Apokyn is used to help prevent Parkinson's symptoms during Off periods when the Sinemet has worn off. p
neilp02
in
Cure Parkinson's
4 years ago
major worsening of condition meds not really helping. any advice/insight
hi all, looking for some insight into recent changes/worsening in my condition when worn off meds. about two weeks ago i got run down through lack of sleep and seemerd to catch a bug had mild fever nothing to bad seemed to pass in a day or two but when meds are worn off since then my symptoms seem worse
hi all, looking for some insight into recent changes/worsening in my condition when worn off meds. about two weeks ago i got run down through lack of sleep and seemerd to catch a bug had mild fever nothing to bad seemed to pass in a day or two but when meds are worn off since then my symptoms seem worse
Todd-pw
in
Cure Parkinson's
4 years ago
''ON PERIOD"' OF SINEMET KEEP DECREASING LEADING TO FREQUENT OFF PERIODS.PLEASE HELP.
Hi Friends, Please help with your experience in spacing sinemet doses closer due to sinemet on period now decreasing,pending when I switch to Rytary as per my MDS.My previous schedule was 2 tab 25/100mg, at 8:00am,12;noon,4:00pm, and 8;00pm and one at bed time to sleep as approved by MDS. This has worked
Hi Friends, Please help with your experience in spacing sinemet doses closer due to sinemet on period now decreasing,pending when I switch to Rytary as per my MDS.My previous schedule was 2 tab 25/100mg, at 8:00am,12;noon,4:00pm, and 8;00pm and one at bed time to sleep as approved by MDS. This has worked
OREOLU
in
Cure Parkinson's
4 years ago
Foot Dystonia stiffness
I have a Parkinson disease a number of years. In the the beginning of my journey Sinemet helped with my leg dystonia. My entire leg is stiff and stiffness started in my right arm. I was going to buy magnesium spray on Amazon, but I do not know what the best kind to get. Does MM help? Thank you! Thank
I have a Parkinson disease a number of years. In the the beginning of my journey Sinemet helped with my leg dystonia. My entire leg is stiff and stiffness started in my right arm. I was going to buy magnesium spray on Amazon, but I do not know what the best kind to get. Does MM help? Thank you! Thank
luba1
in
Cure Parkinson's
4 years ago
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