is it possible to go 7 years without taking parkinsom medicine?
no medicine: is it possible to go 7 years... - Cure Parkinson's
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football10
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Medication prescribed by a movement disorder specialist can reduce and even eliminate symptoms, allowing for many years of normal functioning. This allows for us to have the energy and motivation to exercise which so far is the only way to slow progression. Everyone is different and you may be able to delay taking medication for awhile but eventually it becomes a choice between being able to live a normal or mostly normal life or having to depend on others for activities of daily living. Best to see a well recommended clinician and keep communication between appointments.
Linore here has very good advice, don't discount it because it is succinct, she has absolutely given you the core background you need, to now go study up and get started.
The longer you can delay use of the Dopa meds the better, but to do so profitably means maximizing the various other practices into habits to stimulate and preserve as much function that can be made from exercising, other things these folks know, etc., because ultimately you cannot prevent needing to use the dopa's...but with the right exercise and faithfully habituated, you can preserve your quality of life as much as can be, and profitably delay the day that you will indeed have to go the dopa's. Why? Because dopa's are both the best AND final resort, in large, and they stop working or impose eventually great side effects or both. In the end, when they fail, you start branching into the neurosurgery (pallidotomy) realm. In the meantime, you will grow progressively more and more disabled.
So you have to, if at all possible, make lifestyle commitments to slow progression. And that's exercise. But it's not irrational exercise, fanatical or compulsive...just what's already known to be just about the healthiest thing you can do for yourself anyway. Ever heard of the phrase "positive addiction"? We are actually built to become addicted to things, in most areas of our lives. Just make sure they are things that are good for you, and it's a rather fun, pleasant way to live; the experience of the rewards actually keep you going, and liking it.
It's a quality of life trade-off either way, and that's a personal matter and itself a movable feast. "... exercise which so far is the only way to slow progression." This is a many year proposition, because some have persisted in their life after diagnosis for twenty and more years. You are thinking "slow marathon." But doable. Even enjoyable. And you don't have to be a fanatic...just wise. Think of it as an ambling marathon. Just amble along on your marathon. Start today. You don't have to kill yourself at it. You'll see.
Wonderful advice, Marion! COVID has sadly kept me out of the gym even though gyms are open in my area., not safe! The good news is that exercise can be done almost anywhere. Walks outside and yoga on the floor work well. The only problem will be icy sidewalks in the winter if it gets that cold(less likely every year) and hope there will be a vaccine by then.
Go the natural route with Mucuna Pruriens and amino acids. George is doing very well. Perhaps, if you started off with vitamin B1, you would not see any progression in PD. It has worked for others.
in reply to bepo
B1 does not stop progression.
bepo in reply to
Well, you might want to check that out with people who know a lot more than I do, and have a lot more experience. Dr. Costantini stated that B1, at the right dose could stop progression of PD. The hard part is finding the right dose. Talk to Royprop and chartist. Unfortunately, Dr. Costantini died during Covid-19. He was a great resourse.
in reply to bepo
Firstly, the only source of this supposed quote is this forum. There's no evidence of the doctor ever writing this down, or the context in which it was said. I have read Constantinis published work and nowhere in those papers does he draw this conclusion.
Secondly, RoyProp has acknowledged that his PD has progressed whilst on B1.
You shouldn't blindly forward on things that you don't know to be true.
bepo in reply to
Think what you want.
Can you provide any evidence for your claim?
Directly from Costantini : ........"This may be due to the fact that, even
though thiamine restores survived cells and seems to stop the development of the disease, the cells left untouched by the aggression of the disease are in limited
number and are not capable to substitute all functional systems that depend
upon a healthy substantia nigra. We observed that the right dose of thiamine can lead to an improvement of the symptoms between 50 and 80-90%, but in order
to push towards the complete regression of the symptoms the correct dose of l-dopa should be coupled to power the dopaminergic motor circuits. "
"Summarizing, out of the 2,500+ patients we have treated we found that:
• Relevant improvement of motor and non-motor symptoms;
• The disease does not seem to progress;
• Absence of insurgence of complications due to long-term use of L-dopa;
• No collateral effects or alterations of the results of blood tests.
bepo in reply to
I got the information from Costantini's published work. You might want to research further.
in reply to bepo
Can you provide a link?
bepo in reply to
Sorry. It was a copy and paste. I copied the material for our own use. It's out there.
in reply to bepo
So you claim it's from "published work", but cant provide a link. Ok.
bepo in reply to
Unbelieveable! Don't take B1. Do your own research. What else have you got going for you??
bepo in reply to
I think you must be a very unhappy person.
in reply to bepo
You have a well documented history of posting information that could be delicately described as absolute nonsense. Do not be surprised when people are skeptical about your claims and ask for sources. You brought this upon yourself.
You are literally claiming that B1 stops the progression of PD. This would be, by some margin, tbe most significant development in the history of neurological disease, if it were true. Yet you are surprised when people ask you to post a source of the information.
I'll say it again, on the off chance that you absorb it: I HAVE done the research. There is no evidence that B1 stops the progression of parkinsons disease. If we were able to rely on the informal remarks of or notes written by every single doctor that claims to have discovered a miracle breakthrough then WE WOULD ALL BE CURED BY NOW.
bepo in reply to
You have not done enough research! Can a negative attitude impede progress with PD? I think so.
I am in my 8th year no meds and still exercising
That's fantastic. Congratulations! It's also unusual. Do you mind explaining how you were diagnosed, what symptoms you have, and how recently your diagnosis was confirmed by a neurologist? Thank you
And what exercises you do?
Less than I should. I walk the dogs at least 5 times a week. Thats a fast walk for an hour including a steep hill to finish which gets my heart rate over 130BPM for 15 minutes. Before Covid I played tennis (will hopefully get a game this week) and ski in the winter. Also play ping pong when not too windy. I used to go 3 times a week to a weights gym, but again covid, so we are looking at clearing the garage and getting a machine. And because I have a desk job, I make a point of getting up and doing neck and shoulder rolls regularly
Thanks.. my question was to ryanJames1 as an extension to your question... 
Walking,Pilates and leg master machine for pelvic floor nothing too intense I’m 65
Did you ever think of getting a standing desk. Great job. The one I have moves with just the flick of a switch.
Thanks but I prefer sitting. I have an all bells and whistles chair and try to remember posture
Hi
My first symptom was tremor in left-hand after a broken wrist diagnosed as Parkinsons two years later with tremor in left leg that was six years ago… Also have tremors in right hand...
Parkinsons is no walk in the sunshine with or without meds just a choice you make
in reply to ryanJames1
How much mucuna are you taking?
ryanJames1 in reply to
1 teaspoon with an nac in the morning and the heaped teaspoon of Mannitol
Pretty lucky if you can hold off that long. Are you sure you have Parkinson’s?
Yes I have bradakynesia and I have had dystonia in toes…
It would be lovely if it wa essential tremor but I definitely have a progressive disease Mannitol help me regain the ability to turn over in bed again and pelvic floor exercises helped with mild incontinence
Hi Ryan,
good to see you are doing well... just wondering do you find anything that helps with the toe dystonia?
Not sure dystonia is much improved also have 1/2 of Ceylon Cinnamon
Football why “7 years” what happens after that?
I’m at 5-7 years depending on what you call my first symptom. 2015 was a tremor, but 2013 was acting out during dreams. 4 neurologist/MDS, said it was PD. I haven’t seen a doctor since 2017 and take no prescriptions.
I’ve found what works for me, and I’m doing extremely well. I have no plans to go back to doctor at this point or in the foreseeable future.
Staying happy and healthy, and loving life my way!
Constance
in reply to Cons10s
How much mucuna are you talking?
I think that if you're taking exogenous ldopa, you're taking exogenous ldopa. I'm not trying to rain on your parade at all, but there's no difference between the ldopa in your mucuna and the ldopa in prescription medications. Yes, they are accompanied by different things, and there's no doubt that people report different patient experiences with them (efficacy, side effects), but the active ingredient is literally the same thing.
Cons10s in reply to
You’re not raining on my parade, I do take Mucuna and the amount varies. Silly as it sounds I require more around a full moon then the rest of the month where I can easily forget I even need any. Women’s bodies spend much of their lives operating on a 28 day cycle so maybe something too that though probably a long shot.
The question was, “7 years without medicine”. There is a big difference between ldopa/pharm and ldopa/Mucuna...No side effects, and Mucuna possibly doesn’t lose its efficacy. My disease hasn’t gotten worse it’s gotten much better. 4 years ago I could barely work, and had trouble making it through daily tasks. Today life is very near normal, I participate in all daily activities similar to before PD. My husband says “at the rate I’m going I should be symptom free in another year”. That’s his observation anyway:). Wouldn’t that be nice!
I was recently looking for cases of mucuna lasting longer than the pharms and found a woman taking it 12 years with no change, that's heartening. I take mucuna and no side effects, definite difference from pharms. A scientist could probably be able to tell the difference.
Rosenmu, I would love to read the info on the 12 year Mucuna Woman.
Can you elaborate on what “no change” means? Not sure if you meant her dose and it’s effectiveness or no progression in her disease.
Which Mucuna brand? Any grade and dosage suggestions?
I use Barlowes 40% . I take it on an add needed basis anywhere from 4 to sometimes 8 a day. I take the mid day dose with Now EGCg, green tea extract. I know when I take a little to much Mucuna the terrible side effect in 10 minutes of yawning:).
Honestly my Mucuna has become more effective/reliable with time. In the beginning it didn’t feel as effective but I had a lot of symptoms all types back then. Now I have only two symptoms and the Mucuna is very effective for me for intermittent gait disturbance and mild tremor.
in reply to Cons10s
I dont agree that these fundamental universal differences between mucuna and CL exist. I accept that you've had a better experience with mucuna. But there an immense number of PWP taking CL without side effects, and some people have reported side effects (like dyskinesia) from mucuna, too.
C /l does not stop working, our bodies are less able to utilise the levadopa. I expect that would be true no matter what form of levadopa we take though there may be time differences.
This is a good overview and with research links.
My husband has upped his walking since lockdown! He is on PD meds but since we walk about 3 miles everyday some days needs less C/L. He does take supplements.
Still says legs feel weak but still carries on. Takes a tennis ball and uses that while walking - does provide a distraction from aching legs! Going to carry on with this as we both enjoy finding different routes near our home and feeling fitter!
Hi Football
I have been without any Pd meds since 2002.
What is right dose of walking?I am on pramiplex 1.05 mg and Rasalect 1 mg daily Having mild tremors in right hand during dress/anger .Have stooping and forward bending of neck slow movements with small seps and difficulty in personal functions like toothbrush saving wearing of clothes.pd was diagnosed in 2015 Walk 3-4 km daily with speed of 15-16 minute per k m please help me to advise how much I should walk want to be with out medication because of side effect of leg edima I and addiction of trading in share market,sexual urges I am 66years old
Hi Football
Sorry I pressed the wrong button before answering your question.
Fast Walking Rules
Please note that this and all other articles are written by me, as a person with Parkinson’s disease (Pd). I understand what having Pd is like and what we can and can’t do. I am not a trained Physical Exercise person, nor am I a medically trained person, and the way I describe things is maybe not the same way they would, but you, as Parkinson’s patients, will understand what I am saying.
*When I say his, him or he I mean both sexes.
*************
1.Start doing FAST WALKING for no more than 10 MINUTES!
2.Walk for that time every second day for 2 weeks; i.e. Monday, Wednesday and Friday each week or Tuesday, Thursday and Saturday each week or every second day, with no break at weekends.
3.After each 2nd week, add a further maximum 5 MINUTES onto the walking time. So the 2nd 2 weeks you walk for 15 minutes. Then the 3rd 2 weeks you walk for 20 minutes. Etc.
4.Never walk longer than these times as stipulated!
5.Never walk every day!
6.If you feel that you cannot start at 10 minutes then start at the time you are able to do to begin with and add as much time as you are able every second week, BUT NO MORE THAN 5 MINUTES!
7.When you reach one hour, you do not walk for more than 1 hour, you only try to go FASTER!
8.ENJOY YOUR WALKING!
How do you know if you are walking at maximum speed?
If you can speak more than two words you are not walking at YOUR MAXIMUM SPEED!
If you cannot speak at all you are walking too fast.
You should just be able to speak a maximum of 3 words between breaths.
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