no medicine: is it possible to go... - Parkinson's Movement

Parkinson's Movement
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no medicine

football10
football10

is it possible to go 7 years without taking parkinsom medicine?

51 Replies
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Not recommended

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.

Lionore
Lionore in reply to MarionP

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.

bepo
bepo in reply to Lionore

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.

ChrisWF
ChrisWF in reply to bepo

B1 does not stop progression.

bepo
bepo in reply to ChrisWF

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.

ChrisWF
ChrisWF 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
bepo in reply to ChrisWF

Think what you want.

WinnieThePoo
WinnieThePoo in reply to bepo

Can you provide any evidence for your claim?

bepo
bepo in reply to WinnieThePoo

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
bepo in reply to ChrisWF

I got the information from Costantini's published work. You might want to research further.

ChrisWF
ChrisWF in reply to bepo

Can you provide a link?

bepo
bepo in reply to ChrisWF

Sorry. It was a copy and paste. I copied the material for our own use. It's out there.

ChrisWF
ChrisWF in reply to bepo

So you claim it's from "published work", but cant provide a link. Ok.

bepo
bepo in reply to ChrisWF

Unbelieveable! Don't take B1. Do your own research. What else have you got going for you??

bepo
bepo in reply to ChrisWF

I think you must be a very unhappy person.

ChrisWF
ChrisWF 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
bepo in reply to ChrisWF

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

JayPwP
JayPwP in reply to WinnieThePoo

And what exercises you do?

WinnieThePoo
WinnieThePoo in reply to JayPwP

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

JayPwP
JayPwP in reply to WinnieThePoo

Thanks.. my question was to ryanJames1 as an extension to your question... :)

ryanJames1
ryanJames1 in reply to JayPwP

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

ChrisWF
ChrisWF in reply to ryanJames1

How much mucuna are you taking?

ryanJames1
ryanJames1 in reply to ChrisWF

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?

ryanJames1
ryanJames1 in reply to Astra7

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

Malcomx
Malcomx in reply to ryanJames1

Hi Ryan,

good to see you are doing well... just wondering do you find anything that helps with the toe dystonia?

ryanJames1
ryanJames1 in reply to Malcomx

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

ChrisWF
ChrisWF 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
Cons10s in reply to ChrisWF

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!

Rosenmu
Rosenmu in reply to Cons10s

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.

Cons10s
Cons10s in reply to Rosenmu

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.

Rosenmu
Rosenmu in reply to Cons10s

The mucuna was still working for her after 12 years, whereas I have heard Levofopa quits working after a time. I will try to find the info, brain does not always remember.

JayPwP
JayPwP in reply to Cons10s

Which Mucuna brand? Any grade and dosage suggestions?

Cons10s
Cons10s in reply to JayPwP

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.

JayPwP
JayPwP in reply to Cons10s

Thanks

JayPwP
JayPwP in reply to Cons10s

Tried to look at options in India, confused with the many options available.

Not interested in Zandopa due to added sweetener.

Any suggestions welcome... May have to pick the seeds from nearby trees and roast and powder them myself :)

ChrisWF
ChrisWF 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.

Hikoi
Hikoi in reply to Cons10s

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.

apdaparkinson.org/article/m...

Hikoi
Hikoi in reply to Cons10s

I generally go by diagnosis as first symptoms can easily be missed. It is believed we develop PD 10 or 20 years before diagnosis.

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.

Asbhai
Asbhai in reply to JohnPepper

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.

My Story

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Interview with Dr Norman Doidge

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Clovelly Surf Club Talk

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Barry Geffen Video

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San Francisco Talk:

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