Hi all I was wondering how you guys have progressed in terms of PD I was diagnosed 5 years ago age 34 am now 39.
My first symptom was dystonia in my right hand which I call it the claw... Roll on 5 years when meds are off a cant get off the sofa,bed unassisted can barely walk unassisted feeks like both arms have lead weights on and so hard to lift... Can't do the easiest of mundane tasks like wipe my bum etc... Cant sleep when uneducated which is the majority of the time I di have sinemet cr 100mg at bed but its hit and miss.. I told my NHS consultant and he wasn't intrested.. Am half tempted to chuck another stalevo in the mix my self and say nothing so I can sleep would that be a good idea?
I was recently on 2mg patches neupro but the dyskensia was terrible I was running a marathon all day I think I lost a canny bit of weight... But since coming off them 10 days ago I feel so lethargic like am on a big come down.... That normal?
My current med regime is 6 x 100mg stalevo per day, up to 2 x 50 mg dispersable madopar (my magic tablet) , 1mg rasagiline in the morning and 100 mg CR half sinemet before bed.
Am really struggling with sleep and off periods... As it feels like I am unable to move in bed so lie there take meds at 4.30 on at 5 am then out to the world.... Should I just throw extra stalevo on the mix?
Also is it normal to progress at such a fast pace? Gotta say it has me worried.
Thanks for reading my wall of text and look forward to your replies x
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stanny7
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The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Hi Roy, I watched your video of your pull test and the following video of the B1 benefits, I have tried to get back to it to show my wife who was diagnosed 2016, but I just keep getting Dr Constantini up 🤔
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Hi royprop i had the dbs installed 11/2 years ago on one side , all is well , but no meds so my question to you is If i don’t take meds would the b1 protocol work for me
Hi Pete...I’m thinking about doing the unilateral DBS myself...I’m curious about what drugs you were taking prior and for how long? Had u started having any dyskinesias? Also wondering if you had a benefit on the on the other side… Some studies say that there’s a small benefit even with unilateral DBS. Thanks! T
Hi tj I tried about 6 different drugs and they all made me sick and lifeless so my doctor said to have the dominant side done and I did and it pretty much fixed the problem now my left side is starting to shake so I may try meds to see what happens and I’m starting to get some stiffness now because I can’t dance anymore ,
Hey...thanks for responding! I go in in July to start the DBS evaluation...I mainly have rigidity and bradykinesia with no tremor...what were your symptoms if u don’t mind me asking?
Mostly tremors and the ability to shave and brush my teeth, now i have no problem doing any of this, the only thing now is when i get even a little nervous I start to shake , so I'm going to my next doctors appointment and I'm going to see if he can give me something to control this. Other wise all is good and just keep a positive attitude
Here is (a good explanation and) an answer to your question.
"Stalevo can be substituted for carbidopa/levodopa and entacapone, which are administered as individual drugs. It can also replace carbidopa/levodopa therapy (without entacapone) when patients experience the signs and symptoms of end-of-dose “wearing off.” This is only for patients taking a total daily dose of levodopa of 600 mg or less, and not experiencing dyskinesia or involuntary movements.
My husband has been diagnosed for just over 3 years. He’s 56. He was slowly getting worse but last June we started on high dose thiamine b1. He has nor progressed at all. Look into it !!
hi stanny ive had pd 10 yr my magic pill dispersable madopar 1x5 per day cant sleep cant move in bed get up around 2am and ive had dbs x2 ops on a mixture of meds ( pramipexole.madopar ,opicapone and still get slowness and freezing gate when in off period .Having problems walking (awaiting hip replacement .already had knee replaced so you and me in same boat = they need to find new medication and fast ........regards Mick
Hi mate... it's a nightmare at bed time I dread it wake my partner to put me on the couch all I can do is take an extra tablet but not keen on self medicating... Guess needs must.
I can't move at all when ko medication in me ita crazy.
I suggest, if your on Facebook or have a friend on FB reading Gary Shapes ( Outhinking Parkinson’s ) recent posts ‘What happened to Gary Sharp part 1’ which was posted on his page 7th May ( there are 11 parts but the first 4 are of interest in this aspect) on his Facebook page before increasing your medications further.
I read parts 5 and 11 available with the links that you and Iqbal provided. I am very much interested in reading parts 6 to 10 but I don’t have FB and I can't access. Can you provide the links for 6 to 10?
Yes Id take another med though you might find 200mg controlled release better. 100 is a small amount of CR. Make changes slowly so you can track effects.
The patch is a dopamine agonist and best to withdraw slowly not abruptly. It can make you feel low when withdrawing. More later if i remember.
Thanks I'll have recently added an extra dispersable madopar for now and see how I get on thinking about switching it to a stalevo as I have a lot of those over.... The night times are worse due to sleep issues can't move so unable to get comfortable so frustrating.
Its night and day when my meds are working I am practically frozen in the spot I sit/lie down till my wife gives me my medication.... Once it kicks in I am on my feet out and about!
Yip that patch wrecked my regime feels like 1 step forward 2 backwards
There are no magic pills sadly! They help reduce the symptoms so while they are active you can't see the disease progression. It hits you when the pills are not working. I was dx around 6 years ago and my tremors are certainly worse but I can do most things when "off" which may be due to changing my food (Mediterranean diet), regular exercise (not easy but my life depends on it!) and possibly regular B1 dose of 500mg per day. The evidence for exercise is best so make that your number 1 priority and get meds dosage right to help with regular exercise.
Try changing your food; to much protein (milk is really bad) can limit your meds uptake so they don't work well. A good neuro should be able to sort out the best possible combination of meds for you.
You are about the same age my husband was when first diagnosed. Forward to his current age, 56. Sinemet was his go to medicine before his deep brain stimulation 15 years ago. Was taking a tremendous amount of medicine before DBS. Unfortunately PD effects people differently and has many forms. Is there anyway you can change your neurologist? Seems like you need someone more apathetic and caring. He/she may not be as knowledgeable as someone specializing in movement disorder. Hang in there! 🙏🏼
Hi there! I would consider my husband as stable. We’ll take that! Only thing we are concerned about is memory. Parkinson’s is a progressive disease and the key is to stop progress! Everyone reacts differently to this disease. I push my husband everyday to fight...
Hi there, how bad was your husband when he got his DBS it has been discussed with my Parkinson's nurse... I am at the stage where I am so dependent on my meds a cant do anything until meds on ofc I am on atm as I cant type in my phone etc.... Is do night and day when I am medicated its unreal.
1st consultant was a sleep specialist she was ok she referred me to the cresta clinic after 3 years they seem worse than the last consultant.
Stanny7, D’s DBS surgery has saved his life! Restored his confidence, put PD in its place. But, we must remember that PD is progressive. We will take/try anything to help. Before surgery, he was popping Sinemet like every 2 hrs. I call D my miracle, because that is exactly the outcome-if you want to improve quality of life, I would take that chance! Please let me know what you decide, etc.
Hi stanny. I am sure you are aware that there is no cure for Pd. You may also be aware that no Pd medication, except MAOb inhibitors have any effect on the progression of Pd. The only thing that has been shown in controlled studies is fast walking. I have been Pd-medication-free since 2002. I was diagnosed in 1992. I have done fast walking ever since 1994. Look at my website - reverseparkinsons.net and contact me, it will cost you nothing!
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