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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
7 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
8 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
8 months ago
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Psalm 119:143
As a believer that Jesus Christ is God and I have found him as my Lord & Saviour. The Bible has become a living book to me. its my comfort, my guide and my medicine, for sleep, peace of mind etc!! Thats why i write under the title Psalm 119:143! Trouble and Calamity have found me in the form of Parkinsons
As a believer that Jesus Christ is God and I have found him as my Lord & Saviour. The Bible has become a living book to me. its my comfort, my guide and my medicine, for sleep, peace of mind etc!! Thats why i write under the title Psalm 119:143! Trouble and Calamity have found me in the form of Parkinsons
Psalm119143
in
Cure Parkinson's
8 months ago
Why Won't My Neurologist Listen (Explanation)
While my #1 Neurologist diagnosed me with something I never wanted, my #1 Neurologist was one I was very lucky to have known. I only had two one hour visits with him, he was so passionate and willing to help. He told the wife and I, anytime you need my advice or help phone me any time, email me any
While my #1 Neurologist diagnosed me with something I never wanted, my #1 Neurologist was one I was very lucky to have known. I only had two one hour visits with him, he was so passionate and willing to help. He told the wife and I, anytime you need my advice or help phone me any time, email me any
72andnotout
in
Cure Parkinson's
8 months ago
Whole-body shaking
Hello, I have a question regarding whole-body shaking and would be grateful for any information you could give me. Five years ago when I was 49 I was diagnosed with Parkinson's disease. My only symptom was that within a few months my whole body suddenly became very slow. It was bi-lateral, and equally
Hello, I have a question regarding whole-body shaking and would be grateful for any information you could give me. Five years ago when I was 49 I was diagnosed with Parkinson's disease. My only symptom was that within a few months my whole body suddenly became very slow. It was bi-lateral, and equally
Daisies22
in
Cure Parkinson's
9 months ago
My perfect cousin…………..(intestine related)
I’m unsure how by many of you will know this funny little song by an Irish band called The Undertones, but it’s first lines go: ‘My perfect cousin. What I like to do he doesn’t’. Strangely I seem to think of my intestines as some annoying, smug and dysfunctional relative. I can’t get rid of him but
I’m unsure how by many of you will know this funny little song by an Irish band called The Undertones, but it’s first lines go: ‘My perfect cousin. What I like to do he doesn’t’. Strangely I seem to think of my intestines as some annoying, smug and dysfunctional relative. I can’t get rid of him but
jeeves19
in
Cure Parkinson's
9 months ago
Head twisting
I am a PWP diagnosed 6 months ago aged 58, my neurologist thinks I have been suffering undiagnosed for 10 years, I am now on 25/100 Madopar 3x per day. I usually walk 3-4miles per day and have recently noticed when walking my heard is trying to turn/twist to the right, has anyone else had this issue,
I am a PWP diagnosed 6 months ago aged 58, my neurologist thinks I have been suffering undiagnosed for 10 years, I am now on 25/100 Madopar 3x per day. I usually walk 3-4miles per day and have recently noticed when walking my heard is trying to turn/twist to the right, has anyone else had this issue,
JH23
in
Cure Parkinson's
10 months ago
Dystonia: WTF?!
Never saw this one coming. Funny, when you type this word into the search, there are very few posts with this in the title. Strange as this is becoming the symptom I fear and loathe most. During my 8 years with PD, I’ve been conscious of Dystonia in isolated areas like feet but about a year ago my diaphragm
Never saw this one coming. Funny, when you type this word into the search, there are very few posts with this in the title. Strange as this is becoming the symptom I fear and loathe most. During my 8 years with PD, I’ve been conscious of Dystonia in isolated areas like feet but about a year ago my diaphragm
jeeves19
in
Cure Parkinson's
10 months ago
In defence of meds!
Hey gang. Ever since I’ve been a Parkie, I’ve noticed how so many members of the community are strongly focused on either reducing or phasing out drugs altogether. I’ve usually supported the ambition but today had it well and truly brought home to me how important Levadopa is in managing the disease
Hey gang. Ever since I’ve been a Parkie, I’ve noticed how so many members of the community are strongly focused on either reducing or phasing out drugs altogether. I’ve usually supported the ambition but today had it well and truly brought home to me how important Levadopa is in managing the disease
jeeves19
in
Cure Parkinson's
10 months ago
update on hubby
Hubby was feeling very bad earlier in the year from what turned out to be overdosing of levodopa when they changed him to the ER madopar. This caused severe rigidity even in his throat, agitation and sundowning in the evening, and eventually he kept trying to escape in the night to try and kill himself
Hubby was feeling very bad earlier in the year from what turned out to be overdosing of levodopa when they changed him to the ER madopar. This caused severe rigidity even in his throat, agitation and sundowning in the evening, and eventually he kept trying to escape in the night to try and kill himself
LAJ12345
in
Cure Parkinson's
10 months ago
COMT inhibitors
Hubby is doing really well at the moment and I think one of the things that has helped has been the introduction of 1/2 a entacapone tablet taken at the same time as his madopar/ mucuna doses. According to his genetic report his COMT appeared to be one thing that was functioning normally so I was a
Hubby is doing really well at the moment and I think one of the things that has helped has been the introduction of 1/2 a entacapone tablet taken at the same time as his madopar/ mucuna doses. According to his genetic report his COMT appeared to be one thing that was functioning normally so I was a
LAJ12345
in
Cure Parkinson's
11 months ago
neck pain
hello, have you found a way to ease neck pain? My husband was diagnosed with PSP a few years ago, though like many, symptoms were evident a few years before this. He is suffering with neck pain. He also has pain in upper arms (deltoid) Gp thinks arm problem may be Frozen shoulder and has referred him
hello, have you found a way to ease neck pain? My husband was diagnosed with PSP a few years ago, though like many, symptoms were evident a few years before this. He is suffering with neck pain. He also has pain in upper arms (deltoid) Gp thinks arm problem may be Frozen shoulder and has referred him
Rose1sunflower
in
PSP Association
11 months ago
B1 Therapy
Hi, I’m new here. My husband was diagnosed of Parkinson’s late 2021 before his 50th and was put on medication since last year. He’s now on Madopar 100mg x3 We are a young family with two children. This has come as a shock to us and trying to manage and see the positivities to life as much as we can.
Hi, I’m new here. My husband was diagnosed of Parkinson’s late 2021 before his 50th and was put on medication since last year. He’s now on Madopar 100mg x3 We are a young family with two children. This has come as a shock to us and trying to manage and see the positivities to life as much as we can.
GratefulHeart23
in
Cure Parkinson's
11 months ago
Ratio of Mucuna Pruriens in mg to synthetic levadopa ?
Does anyone know the equivalence between 100mg of a Solbia brand capsule with its equivalent in
modopar
? thank you for your feedback... Lorenzo
Does anyone know the equivalence between 100mg of a Solbia brand capsule with its equivalent in
modopar
? thank you for your feedback... Lorenzo
Lolo2022
in
Cure Parkinson's
2 years ago
Safinamide
hello I was diagnosed with PD in Nov 2019 and in May 2020 my right hand tremor was getting hard to tolerate as its amplitude had increased and it moved to include my left leg and chin. In May 2020, somewhat anxiously, I started on 1 yellow pill (Sinemet plus) at 8am, 1pm, and 6pm. Within 4-8 weeks
hello I was diagnosed with PD in Nov 2019 and in May 2020 my right hand tremor was getting hard to tolerate as its amplitude had increased and it moved to include my left leg and chin. In May 2020, somewhat anxiously, I started on 1 yellow pill (Sinemet plus) at 8am, 1pm, and 6pm. Within 4-8 weeks
Tomkins
in
Cure Parkinson's
1 year ago
My gut can’t take Madopar anymore
After more than 4 years with Madopar, suddenly since last dezember i can’t take it anymore. Since dezember i have dysentery that won’t go away and now after medical exam, i have an inflammation of the intestine…. if you had the same problem, what did you do ?
After more than 4 years with Madopar, suddenly since last dezember i can’t take it anymore. Since dezember i have dysentery that won’t go away and now after medical exam, i have an inflammation of the intestine…. if you had the same problem, what did you do ?
marcet
in
Cure Parkinson's
1 year ago
How do you know when to go to emergency when PD symptoms are beyond erratic?
My husband has developed excessive sweating to the point of drenched and during this time his leg is writhing and twisting to the point he can't walk and the pain is excruciating. These episodes can last for an hour up to several hours, and they happen now 2 or 3 times a day. He is on madopar 100/25
My husband has developed excessive sweating to the point of drenched and during this time his leg is writhing and twisting to the point he can't walk and the pain is excruciating. These episodes can last for an hour up to several hours, and they happen now 2 or 3 times a day. He is on madopar 100/25
PDsux_10
in
Cure Parkinson's
1 year ago
Any suggestions for managing this kind of dyskinesia?
I have recently started to experience a twitchy left leg which my neurologist says is dyskinesia. It happens about an hour after I’ve taken Madopar. I tried taking one 100/25 tablet in the morning and another about 8pm. This seemed to work but at my last visit I was told that I would be much better taking
I have recently started to experience a twitchy left leg which my neurologist says is dyskinesia. It happens about an hour after I’ve taken Madopar. I tried taking one 100/25 tablet in the morning and another about 8pm. This seemed to work but at my last visit I was told that I would be much better taking
bandmember
in
Cure Parkinson's
1 year ago
What to try next?
My 69 year old HwP has had tremor dominant PD for the past 7 years - taking only Azilect (that he started a year ago). The tremor is much worse, embarrassing him at work, so he needs more therapy. Shooting pain in one foot (and numbness in both) is another recent problem. The neurologist prescribed
My 69 year old HwP has had tremor dominant PD for the past 7 years - taking only Azilect (that he started a year ago). The tremor is much worse, embarrassing him at work, so he needs more therapy. Shooting pain in one foot (and numbness in both) is another recent problem. The neurologist prescribed
goldengrove
in
Cure Parkinson's
1 year ago
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