I was diagnosed just over two years ago and am not taking any medication. My most discouraging symptom is slow, small handwriting. Have any of you found Sinemet or any other medication beneficial for handwriting? Unless or until other symptoms materialize, I will not take medication, but I'm curious to know if it will help my handwriting. Thanks for any insight you can provide.
Does Medication Help Handwriting? - Cure Parkinson's
Does Medication Help Handwriting?
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jimcaster
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Vitamin B1 hcl helped my handwriting.
George has only taken mucuna. Every foreign chemical can cause other problems. Mucuna is from natura, not chemicals. His handwriting used to be small, and he used to drool. No more. Before you try anything, My suggestion would be to try B1. Maybe that's all you need, but don't wait. There are people on this site that can help you. We are working on the right dose, but are really close! B1, according to Dr. Costantini, who was the one experimenting with PD patients in Italy, will stop the progression, as well as help diminish the symptoms. Try it first. No side effects!
Thanks. I've been taking B1 since the month I was diagnosed. I think it's helpful, but it didn't help my handwriting.
in reply to bepo
Where do you grow your mucuna and how do you prepare the plant for consumption?
bepo in reply to
We buy mucuna capsules from Barlowe's Herbs in the US. We followed the Marty Hinz protocol with Dr. John Gray.
in reply to bepo
Oh. I assumed when you said 'natural', you were growing your own. I'm not sure buying processed mucuna in a capsule is any more natural than buying levodopa in a pill, given that the levodopa is chemically identical in both.
bepo in reply to
No side effects with mucuna. We avoid chemicals as much as possible.
in reply to bepo
Levodopa (the active ingredient in your mucuna) is a chemical.
bepo in reply to
We avoid man made chemicals.
in reply to bepo
The Dextrin in the barlowe's is a man made chemical.
bepo in reply to
Dextrin is a natural fiber with a lot to offer. It can support your body’s ability to remove wastes. Fiber may also support satiation and healthy weight loss. Dextrin also has the ability to lower the glycemic load of a high-carbohydrate meal. Because it's a water-soluble carbohydrate, it can act as a natural binding agent......
bepo in reply to
Sinemet side effects on drugs.com:
Twitching, twisting, uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
Less common side effects:
Bladder pain
bloody or cloudy urine
chest pain
confusion
difficult, burning, or painful urination
discouragement
feeling sad or empty
frequent urge to urinate
inability to move the eyes
increased blinking or spasms of the eyelid
irritability
lack of appetite
loss of interest or pleasure
lower back or side pain
seeing, hearing, or feeling things that are not there
sticking out of tongue
tiredness
trouble concentrating
trouble in breathing, speaking, or swallowing
trouble sleeping
uncontrolled twisting movements of the neck, trunk, arms, or legs
unusual facial expressions
in reply to bepo
And you have first hand experience with how many of these side effects?
People report some pretty unpleasant side effects from Mucuna, too. Unsurprising, since they contain the same primary ingredient.
bepo in reply to
He has not experienced any side effects. Mucuna is sourced from plants, the white bean in India. How do you think Sinemet is sourced?
healthjade.net/mucuna-pruri...
in reply to bepo
Many PWP are side effect free in the first 10 years, even those taking prescription medicines like sinemet.
bepo in reply to
I have read the first 6 years are the honeymoon.
in reply to bepo
It can be more or less. There is a chart kicking around somewhere here.
bepo in reply to
I am always learning. Before we joined this site, I knew nothing about B1. We are forever grateful!
NRyan in reply to
I think it can be helpful to try and be a voice of reason....can you do it in a less condescending way please? No one on this site is at a picnic, we are all stressed to the max with this horrible disease and this life on this earth. We would love your input without making us feel like crap. Your knowledge is valued....please continue in a way that supports us. Much gratitude!
in reply to NRyan
Noted. Edited.
bepo in reply to
Mucuna has to be balanced with 5-htp and L-Tyrosine. Maybe those who were taking Mucuna didn't follow the proper protocols.
Oh come on Beto. Most of the side effects listed for most drugs never happen .. They are covering themselves. As Professor Andrew Lees (UK) on a link on this site, the system is broken, run by lawyers, universities and hospitals, not by doctors.
Dr John Gray? Is he a Parkinson's specialist?
😉
No. but he had PD and 'cured' himself using Dr. Hinz's protocol. It was where we started, and we have no regrets. It worked for us.
in reply to bepo
Interesting. How long ago was your husband diagnosed and at what age?
bepo in reply to
He was diagnosed 8 years ago. He was 67. He has only been on mucuna and other amino acids during that time. He was tremor dominate. I noticed recently some other non-motor symptoms. He started taking B1, and they went away. We are still working on the dose. His tremor went away and then was a 1-2 in intensity. He is stopping the B1 for 5 days. Today, his third day, his tremor was up to a 3. We will start the B1 again at a lower dose.
in reply to bepo
You are a pretty staunch B1 advocate for someone that is still in the experimental phase.
bepo in reply to
B1, from what I have read, should be taken as soon as you suspect you had PD, or have been diagnosed. Dr. Costantini stated his belief is that as long as you took the B1, the PD would not worsen. Sooner, rather than later.
in reply to bepo
He also said B1 should be taken along with prescription medications, so....
bepo in reply to
Costantini also stated he didn't know about mucuna. If someone can stop their symptoms and the progression with B1, why wouldn't they? They can always look at other remedies, whether it is medication or more natural approaches.
in reply to bepo
How can a serious PD researcher not have heard of mucuna???
bepo in reply to
He was not a researcher. He was an MD, who happened to find out about B1 when it worked for some of his patients with autoimmune diseases.
in reply to bepo
Oh so not a researcher at all? Easier to see why people have doubts then.
bepo in reply to
I haven't heard of anyone having doubts, other than you about B1. I think you might be best served to learn more. It is helping many with PD. If you already have all the answers, it isn't for you. "Do no harm".
in reply to bepo
Numerous people on this forum and most people on other PD forums have great doubts that B1 stops or even slows PD progression.
Gioc in reply to
sorry Chris but you often mention these "many people say that ..." in confirmation of your theses as now, I don't want to doubt, but how do you know since you have been here for a day? if I can ask you, "on behalf of everyone, of all the forums", excuse the irony.
in reply to Gioc
It's possible to browse the forums without registering.
Gioc in reply to
How long have you read this forum and why have you only signed up now? Are you a Pwps or a caregiver or are you here to help us with your knowledge? generalizations like "everyone says that ..." disperse attention and don't help even if confirmed by measurements. given your avatar name I think you don't need to use them.
bepo in reply to
I think you made up your 'name' to have perceived authority. You need to get educated before you make sweeping statements.
in reply to bepo
I dont think its controversial to suggest that there are widespread doubts that B1 stops PD progression.
It's entirely possible that there's some non-placebo therapeutic benefit from B1. I.e symptom alleviation. And clearly, that's great. But that is the same category that all the other drugs (and mucuna) we have. Symptom relief but not disease course altering.
bepo in reply to
Get educated.
in reply to bepo
By reading an FB page?
Alternatively, do you have a link to a peer reviewed paper in which Dr C concludes that B1 stops PD progression?
Gioc in reply to
Scientific sorry I find it strange that you disdain the experiences of other Pwps on social networks like Facebook when you mention the person on this forum, in your post above, as your source of information to explain things about b1, how long have you had Parkinson's? have you tried the b1? do you use ldopa? answer these questions first.
in reply to Gioc
I don't feel the need to answer your questions when all you've done is enter the thread looking for a fight.
Do you have any comments on handwriting for Jim?
Gioc in reply to
If you don't answer the doubts remain.
why did you change your name?
in reply to Gioc
I didn't change my name? Not sure what you mean. You haven't actually commented on any of the content, so I'll leave it for now.
jimcaster in reply to
ScientistChris became ChrisWF. I think that is what GioCas is referring to, but we have gotten far afield from the topic of this post.
bepo in reply to
I have learned from others on this site and the FB page on Thiamine.
How much did you start with? Have you adjusted your dose?
Many PD patients experience improved handwriting from PD meds in the same way that PD meds can and regularly do provide relief from other akinetic challenges.
My handwriting is greatly improved when my medication is working. I take 1/2 of a 25/250 Carbidopa/levodopa about 4 times a day. I am also experimenting with the Barlowes Mucuna 40%.
Hi Jim, I was diagnosed 2 years ago like you. My difficulty handwriting was one of my first noticeable symptoms I take B1 but don't think it improves my handwriting. I also take extended release Pramipexole and think this has really helped, although somewhat erratically. I find that I can write fairly smoothly and without so much rigidity in my hand at times, though it's unpredictable. I'm also aware that some people avoid this drug because of the possible side effects,so you may wish to steer clear. I don't take any other medication at present.
I don't have a handwriting issue, primarily because I'm right-handed, and the PD affects my left side worse and first. But medication helps speed and size of movement. Having been sat on the naughty stool for 10 minutes by my esteemed but somewhat bossy neurologist on Thursday, for increasing my pramiprexol ER dose from 0.78 to 1.06mg without permission, she sat with her jaw on her lap at my left side tap tests. Actually my jaw dropped too. They were completely normal. My guess is it would help your handwriting. Why not try it?
Thanks!
How do you know that? Is it made from petroleum?
My writing has improved greatly, but I can't answer your question as I don't take meds. I also stopped using my dictation headset last year sometime, now typing everything, or signing paperwork at my office and do write a few personal checks and grocery lists. But honestly in today's tech world how much handwriting do we actually need to do besides the occasional birthday card.
Seems to me you have a great opportunity and runway to halt your prognosis, as you've had no other symptoms appear except compromised handwriting. For me, compromised handwriting would never warrant the need for the pharmaceutical roller coaster, but everyone's different, and i'd respect your decision.
I'm a big believer in the power of the mind and healing one's Brain, as you're likely aware because i'm always touting Dr. Joe Dispenza. The NIH also published a paper on a gentleman who reversed his PD with meditation. Dispenza's work has taught me how use energy to heal the brain and body, and based on the observations of the people around me there's been huge noticeable positive changes in my condition. Actually my husband say's "by this year next time you should be symptom free". Wouldn't that be nice!
I could write a lengthy list of symptoms no more, but ill save that for another day.
Are you planning on trying Mucuna before meds?
Very encouraging! I feel the same way about medication. For now, at least, my symptoms don't warrant it. Congratulations on your success!
where do you suggest one starts with Joe Dispenza?
Ryan, Dr. Joe is a big proponent of teaching one to understand the science or understanding why you are doing what you are doing so you can truly benefit. Having said that it’s not advisable just to purchase his meditations,although they do come with instruction his work goes much deeper then that. I suggest starting with his online Progressive Workshop. It’s 299.00 dollars and super interesting. Then I downloaded his meditations to my phone and use them daily. In 1.5 years of meditation my health has improved dramatically and my goal is a full recovery which I’m clearly on my way to achieving. Constance
I am enrolled in Dr Farias Dystonia recovery program. It consists of different exercises which include mainly hand exercises, leg exercises, face exercises, breathing exercises, eyr exercise and eyelid exercises.
In the hand exercises portion there are three videos which are focused on retraining of hand for writing. If you want I can email these videos to you as I cannot share them here because of copyright issue.
In the hand exercises portion there are three videos which are focused on retraining of hand for writing. If you want I can email these videos to you as I cannot share them here because of copyright issue
Please send me the information! Thank you!
I am sending via message
Please send to me also. Loss of handwriting was one of my first symptoms followed by tremor. Thanks, barb.loth@ yahoo.com
I have sent you message
Thank you
Please replace the word “oil” with “Dopamin”.
Any lack of engine oil in the system will lead to extreme engine wear, and driving a car low on oil can lead to some pretty bad situations. If you run out of engine oil, your engine will fail. Inside of the engine, there are fast moving parts, with a lot of potential friction. The engine oil is the lubricant that keeps parts sliding against each other smoothly, instead of grinding each other down.
Dopamin is a very important neuromodulator and without that Musculoskeletal system throughout the body cannot function properly.
Studies have shown that by the time that primary symptoms appear, individuals with Parkinson's disease will have lost 60% to 80% or more of the dopamine-producing cells in the brain.
My undrestanding is that your body is crying for Dopamin (Ldopa) but still you aren’t listening to it.
Low dose Ldopa with B1 and Dr Farias exercises , will make a big difference in our quality of life.
What wd that low dose Ldopa be? Should I give my husband some Mucuna? I know nothing about mucuna. Your analogy about running out of oil frightens me. 😱
He thinks it was the exposure to insect spray that may be the cause. Hair analysis showed mercury 17 years ago. I did not know what to do with that knowledge then. He has been taking pectasol C (and that is supposed to remove toxins including mercury) for 7 months.
I stopped his vitamin B1 for a week ( he is on 100 mg a day) because of active dreams and starting again tomorrow trying 6 days instead of 7. Together with the probiotic clostridium butyricum ( he cannot swallow ghee unfortunately - too surfeit) most noticeable improvements were balance, driving, less coughing. His face is back to natural expression instead of frozen. We were using Vielight until bladder cancer diagnosis in last August last year threw us off rhythm. I guess we hv to get back to it. He says to me I don’t know why you think I have Parkinsons. And I say no worries. You have improved greatly. As long as progression can be stopped and improvements made, hallelujah!
I think I will try melatonin first since it’s dual purpose.
Thanks Kia for helping me with my thought process
We use the vielight, and Pectasol C, as well.
Amalgam fillings can cause mercury toxicity.
I love that he doesn't think he has PD. That's perfect!
May I ask which model of Vielight were you using?
I emailed Dr Lim and he suggested the gamma. I bought both alpha and gamma as a set. I figured the alpha working like a vitamin supplement would help as well. It was 6 days gamma rest 1 day
Was there noticeable improvement from using Vielight or would it be hard to tell between all other things (pectasol, probiotic, etc) that your husband has been using?
We started with vitamin B1 first in Feb 2019. We were trying to calibrate the dose and so he took nothing else. We added Vielight a few months later because rhyspeace mentioned the progress her husband made with Vielight. After 12 weeks of vielight he began to have some sense of smell- it comes and goes. So initially it was mainly these 2. I added the clostridium butyrate shortly after because he always had problems with bloatedness and indigestion and after reading about the gut- brain connection I thought I had nothing to lose after years on nexium. Amazing thing is he does not hv bloatedness n indigestion anymore after years of it.
Pectasol was added in October 2019 More as a cancer preventive and then I discovered it also removes toxins.
He improved greatly on B1 and butyrate that we were not so diligent in his red light therapy. We will however get back to it.
Thank you for detailed response! And now I am curious about your husband being helped by clostridium butyrate which is great because my husband has been on PPIs (prilosec, nexium, prevacid, etc) for years and still is, even though he eats a lot of butter (grass fed) and I would assume gets plenty of butyrate just from it.
Miyarisan is used in Japanese hospitals to treat stomach disorders including helicobacter problems. It is fermented probiotic. I persisted in using it also because of the butyrate benefit. The dose can be 9 -18 tiny tablets. My husband takes 10 divided into 2 doses. And after consuming it for 6 months we realised he did not complain about his stomach anymore. His stomach would always act up after a glass of wine and he would be feeling bloated and uncomfortable. He was advised to go for gastroscope every 3 years by his doctor because of his problems. He had boxes of medication nexium, omeprazole, motilium etc. Now he can have his glass without any complaints. So thankful 🙏🏻
Hi
To determine the right dose of Ldopa, a neurologist should advise and overtime adjust the dose.
I personally asked Dr Costantini about Mucuna and he didn’t recommend.
I think looking for the causes of his PD at this stage wouldnot help. He needs to improve his quality of life.
I would recommend seeing a neurologist as soon as possible.
Yes, my handwriting is much better when my meds are working. I take 100mg Sinemet ER 2-3x a day - a relatively low dose. I've thought about trying to train my left hand to write but still hoping to make it back to get PTT on my left brain which should clear up the right hand issues. Dare I hope to completely stop meds after that?
What I found helps is my small "exer-cycle" it's an electric bike pedal. Cost under $100. I have used it everyother day for years. I also outdoor bike with my electric bike. And also take mucuna and a small amount of CL
When I was working 6 yrs ago, Azilect helped my typing. It helped my writing a tiny bit but my writing keeps getting a little worse every year. I stay on it because, at one time they thought it might help slow the progression.
I was also diagnosed two years ago. I take Sinemet 3x per day. It helps a lot with my handwriting but it goes off after about 2h, especially if I am working a lot that day or stressed. I can use a mouse with my left hand but have not been able to train my left hand for writing.
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