Rate of Progression.: I know we are all... - Parkinson's Movement

Parkinson's Movement
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Rate of Progression.

jimcaster
jimcaster
128 Replies

I know we are all unique and no two of us will have the same experience with Parkinson's disease. Still, I would appreciate any wisdom which more experienced people (5-10+ years post diagnosis) can provide. Did your disease progress in a fairly consistent manner or did it progress slowly at first and then progress more quickly? I am nearly 2 years post diagnosis, still not on medication, and feeling quite normal if not for micrographia and poor sense of smell. I keep worrying and wondering when things will get worse....If you are 5-10+ years post diagnosis, what was your experience? How legitimate is the so-called five year "honeymoon"?

128 Replies
oldestnewest
Zella23

My husband although dx in 2015 and has taken Modopar since then had symptoms going back 5 years before that so lost sense of smell, stiffness around shoulders, slight slowness when walking and difficulties preparing and cutting up food - he is a chef and cooks a lot, so noticed this quite quickly. Also lack of shoulder and arm swing.

He is now on same meds C/L 25/100 3 - 4 times a day and Neuro added in Rasigiline 1 mg recently although my husband has now put that down to 0.5mgs as dyskinesia was worse on 1 mg. He is still working on dosages and sometimes takes half doses of C/L.

His main symptoms now are stiffness, fatigue, but can do most things if a little slower.

Exercises, walks every day can do a couple of miles sometimes more.

Takes supplements, eats healthier has lost weight, started taking Terrazozin in December 2019 , hopefully to slow down progression of PD.

So I would say don’t worry about what you think might happen because it may not, live for the present, enjoy life, and keep busy. ( easily said but hard to do).

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Rlp1
Rlp1
in reply to Zella23

I thought Terrazozin was a Prostate drug. I did not know it could be used for PD.

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Zella23
Zella23
in reply to Rlp1

It was on bbc news and science daily if you google it men who took this drug for prostate issues had slower progression of PD.

As my husband was on another newer drug which doesn’t have the same formula. He switched to the older drug Terrazozin, but there are others that all end in .... zin. Only been on it for a month but fingers all crossed!

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pdinva

My honeymoon ended recently.

It lasted 5 years.

It ended fairly quickly, and from that point on I had to watch my diet very carefully - refraining from eating protein and large meals early in the day, since for me, these have a great impact on levodopa availability (i.e., I suspect at this point the amount of endogenous dopamine produced by my body is just too low, and the availability/delivery of exogenous dopamine becomes much more important)...

My best advice is that during your honeymoon period:

oh, and do regular cardio and strength training, reduce your stress, fix your sleep, and fix your diet...

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AmyLindy
AmyLindy
in reply to pdinva

OMG @pdinva - 👁👁 opener! TY for the inspiration-I am personally challenged #2020

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bepo
bepo
in reply to pdinva

Take B1.

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justhavefun2
justhavefun2
in reply to pdinva

Great song -great reminder! Thanks for posting!

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pvw2

Like you not far enough along, but looking at replies. My neurologist said PD with tremors as the first sign usually progresses slower than rigid muscles as first sign.

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pvw2
pvw2
in reply to pvw2

Progression of Parkinson’s

parkinson.ca/about-parkinso...

"It is difficult to estimate how quickly or slowly Parkinson’s will progress in each person. Each person with Parkinson’s is unique and each person may experience different symptoms. However, since Parkinson’s is a progressive condition, symptoms will worsen over time and new ones may appear. It may progress more quickly in people who are older when the symptoms first begin and less quickly when the main symptom is tremor, especially when it starts on one side."

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MBAnderson

Jim,

So, my theory is that while we cannot predict the rate of progression in any one individual, we can predict that each of our progression will accelerate geometrically with each passing year. That's because if we have 86,000,000,000 neurons, which we do, and say, each year 6 billion commit suicide, after 10 years, for example, the death of 6 billion is a much larger percentage of what remains than it was at the beginning. (That is probably further compounded because with each passing year the number of neurons that die increases.)

That means we will all reach a tipping point, after which the rate of progression will be scary.

That means the goal for a person such as yourself, who has learned is much as you have so early in the process, is to push that tipping point as far back into the future as you can.

Actually, if I were a motion disorder specialist, I would tell patients the honeymoon period is somewhere between 5 and 10 years. I think 5 years is a little stingy.

Smart move your going 100% into retirement now. Now you can focus on what really matters.

Nobody on their deathbed wishes they had more money, but everyone wishes they had better health.

Marc

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Horace99
Horace99
in reply to MBAnderson

That chart you've posted before is helpful I think.

Will you post a new PTT thread when you've had the procedure?

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MBAnderson
MBAnderson
in reply to Horace99

I will indeed.

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pvw2
pvw2
in reply to MBAnderson

To be more accurate, it's particular neurons (in the nigro-striatal dopaminergic system) killed that causes PD. The other neurons killed is uncertain. But, PD symptoms don't show up until most of these neurons are already dead.

In the nih article (Clinical Progression in Parkinson's Disease and the Neurobiology of Axons) at ncbi.nlm.nih.gov/pmc/articl...

" In most reviews of PD, it is stated that motor signs first appear when about 50% of substantia nigra (SN) dopamine neurons are lost19,20, although estimates of up to 60 to 70% have also been proposed21,22"

Since the claim is that people do not die of PD, it seems likely that people can live with no nigro-striatal dopaminergic system neurons alive. The question is what is PD like at this state?

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MBAnderson
MBAnderson
in reply to pvw2

The answer is; it's surely no fun. Wouldn't that leave us without any control of our body at all?

I agree all of our neurons don't die, just some in certain parts of the brain. It does still leaves the premise of geometric progression and a tipping point.

When it is claimed that people do not die of PD, I wonder if it isn't like saying, "He didn't die of a gunshot wound, he bled to death." Pretty much the same as saying, "He didn't die of PD, he fell down the stairs and broke his neck or choked to death or died of aspirational pneumonia, etc."

I think it's pretty clear that people with PD don't live as long as they might otherwise.

But I digress.

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pvw2
pvw2
in reply to MBAnderson

My brother with PD worried that he might end up stuck in a nursing home totally disabled. Instead, he died from a fall.

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MBAnderson
MBAnderson
in reply to pvw2

I'm sorry for your loss. To me, in many ways that's preferable. We've all seen people spend several years wasting away in a nursing home. When there's no longer any joy, what's the point?

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pvw2
pvw2
in reply to MBAnderson

While I don't think he intentionally fell, it probably did motivate him to take the chance to be more abled. He was using a walker.

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Erniediaz1018
Erniediaz1018
in reply to pvw2

😕

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pvw2
pvw2
in reply to MBAnderson

This statement doesn't seem accurate, but may be true for the world as a whole:

"Posted on Jan 20, 2012, 6 a.m.

Life expectancy for patients with Parkinson's disease is poorer than some previous studies have suggested, with barely one-third of patients surviving six years with the condition."

From worldhealth.net/news/parkin...

The other issue with a statement like this is PD diagnosis keeps getting earlier. There is no fixed measurement of when PD starts.

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Mjm012649
Mjm012649
in reply to pvw2

Yikes!

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pvw2
pvw2
in reply to pvw2

"What is the prognosis for people with Parkinson's disease?"

sharecare.com/health/parkin...

Quotes:

The prognosis for people with Parkinson’s disease varies from person to person. Some people survive for 20 to 30 years, and many can stay active and independent for years after diagnosis. Many people need some help with daily activities within a few years of diagnosis, and most will need this help after 15 to 20 years.

With advanced disease, a lot of people have memory issues. People with Parkinson’s typically die due to medical complications such as a fracture or pneumonia.

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Erniediaz1018
Erniediaz1018
in reply to pvw2

I strongly agree with you on this, very inaccurate for the reasons you mentioned.

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jimcaster

Thanks, Marc! That makes perfect sense (both the neuron theory and the retirement reality).

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bepo
bepo
in reply to MBAnderson

B1. I don't know why anyone with PD doesn't take it. It doesn't harm and has great promise for halting progression. Read about it. Study it. I did.

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bepo
bepo
in reply to bepo

Stops it in its tracks and at the same time, improves symptoms!!

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MBAnderson
MBAnderson
in reply to bepo

I totally agree. Everyone should try it and they should stick with it for however long they need to, to get the dose right.

We have to be careful, though, not to create the expectation that it "stops it in its tracks" for everyone, because while it seems to provide more relief than anything else we know of, it doesn't work for everyone -- such as myself.

I continue to take 1 mL injections every week or so and 500 mg orally every morning along with a super B complex a couple times a week. I believe it is probably helping like I believe most things I take are probably helping, but I've never been able to connect any symptom relief to it.

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bepo
bepo
in reply to MBAnderson

Didn't Costantini have success with everyone of the 3500 patients, except one who threw up when she took B1? 3500 is a good amount, as far as I'm concerned. I believe it is all dose related. How long have you been working on the dose?

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MBAnderson
MBAnderson
in reply to bepo

While he is owed a huge debt of gratitude, Dr. C was a little too unequivocal about it, I feel. I don't believe it's possible that it helped every one of 3500 people. I don't believe there's any pharmaceutical or supplement that would help every 1 of 3500 people.

The other thing that is noteworthy is that the benefit seems to fade for some people after about 18 months.

I tinkered around with my dose for the better part of a year.

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bepo
bepo
in reply to MBAnderson

Didn't he also say that for many after so many months, the dose needs to be titrated downward? Didn't he also say that the revised dose kept people symptom free for minimum 5 years.

Those would be good questions for Costantini.

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MBAnderson
MBAnderson
in reply to bepo

Yes and yes.

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GioCas
GioCas
in reply to MBAnderson

Ciao Marc.

IMHO I do not believe that the use of Thiamina can be brought to such a level of glutamate production also because it would be evident from a symptom also reported in the contraindications sheet: agitation, tachycardia, palpitations.

Obvious signs of overdose.

However the problem of glutamate and aspartate exists as every good pediatrician in my country knows and it is in food.

As described in this article I chose because it is easy to read.

MSG=Monosodium Glutamate,

drgangemi.com/health-articl...

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MBAnderson
MBAnderson
in reply to GioCas

Good article.

I wouldn't be surprised if someday it's proven that a lifetime of consuming artificial sweeteners, like Equal, can cause PD.

The safest route is organic, whole plant-based (like in your vegetable garden, Gio) diet, otherwise, I don't see how we avoid poisoning ourselves.

Marc

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bepo
bepo
in reply to MBAnderson

yes! When I first met my husband in 2012, I made him get rid of all his diet coke. He gave cases to the neighbors. Unfortunately, both of them died of cancer.

And yes. In the US, we have tons of glyphosate drowning our plants, going downstream and contaminating rivers, oceans........and us.

So many crops are contaminated with GMO's.

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bepo
bepo
in reply to GioCas

In the US, they 'tamper' with processed foods to find the 'sweet spot'. They have doctors who taste the foods to make sure the foods will be addictive to consumers. The FDA said fats were the culprit. Fat is needed in the brain, which is composed mostly of fat. Instead, different chemicals and sugars are added to processed foods. Avoid them: Cereals, breads and pastries. People in the US who are gluten sensitive, can eat bread in Europe and not have a problem. We also in this country have a problem with dairy. Many who have a problem with dairy can eat cheese in Europe. Unless you eat organic, you are eating adulterated food.

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bepo
bepo
in reply to MBAnderson

Are you sure you are taking the right dose?

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MBAnderson
MBAnderson
in reply to bepo

I can't be certain, but I've tried everything between a few hundred milligrams and a few grams, with and without accompanying injections, and really wanted to feel a benefit, but just never did. I rarely feel anything from Sinemet, as well.

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bepo
bepo
in reply to MBAnderson

How long have you had PD? What are your symptoms? Did Dr. C help you?

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GioCas
GioCas
in reply to bepo

Dear Bepo,

MBAnderson, Marc is perhaps the most transparent person here on HU. you can read his story and much more in his bio. Just click on his photo and you will be redirected to this story of his life.

Furthermore Marc is one of the most listened opinion leaders of the forum for his profound experience and his great humanity which is the first requirement for gaining the trust, attention and esteem of a PwPs. People like Marc make a difference on HU and in life and there is no need to say it.

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bepo
bepo
in reply to GioCas

Thank you for the good advice. I will do that.

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MBAnderson
MBAnderson
in reply to bepo

My tremor showed up in '08, was obvious in '09, was misdiagnosed as essential tremor in '10 and correctly diagnosed in July, 2011. I only exchanged emails with Dr. C once, but I followed the thiamine threads and believe I learned from others, especially chartists, what his positions were.

My symptoms are pretty much the same as everybody else, i.e., tremor in both hands/arms, impaired sleep, voice, gait, balance, dexterity and strength. Constipation, but I have that mostly under control through exercise and my 95% vegan diet. Gait initiation is most obvious to others, i.e., I can't get moving.

I used to feel I was at a disadvantage because while everybody else benefits from Sinemet, I don't, so I've had to compensate by fully exploiting all other therapies and I think because of that, I'm doing pretty well. I, of course, wish I didn't have it, but It's not the most important thing to me. My relationship with my wife and children (and dog) is. I'm retired, we're snowbirds, and I'm happy with my life.

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bepo
bepo
in reply to MBAnderson

George takes 200 mg magnesium from Dr's Best at night. This is working for him. Coffee enemas are also very useful. The organic coffee stimulates the vagus nerve and helps to produce more bile in the liver.

Have you considered mucuna? It certainly has worked for George. I don't know if you have had PD for too many years for that to work. It's worth looking into.

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bepo
bepo
in reply to MBAnderson

PS Gotta have the dog! George, for awhile was not laughing at anything. I felt the only therapy that would work for him was a puppy. It worked! He laughs and smiles a lot now.

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MBAnderson
MBAnderson
in reply to bepo

Smart. It's hard not to LUV a dog.

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MBAnderson

How do I post a picture?

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pdinva
pdinva
in reply to MBAnderson

You need to start a new thread (yes, it is very odd)...

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MBAnderson
MBAnderson
in reply to pdinva

Yes, I saw the option is a new thread, but I thought I've seen pictures in the comment sections I guess not.

Well, so be it. My dog becomes a new thread.

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Parkie-
Parkie-
in reply to bepo

I agree with Marc that we have to be careful not to create expectations.

I am happy for those who get good results with high dose thiamin. However, it doesn’t work for everyone. I can't take more than 100 mg a day, 5 days a week, without getting a worsening of my symptoms, and I know other members who have the same results.

See HU member Greenday's explanations :

healthunlocked.com/parkinso...

"THIAMIN EXERTS cholinergic and GLUTAMATERGIC activity and able to increases the levels of acetylcholine, glutamate and GABA in the brain omicsonline.org/open-access... . "

"High levels of Glutamate have a TOXIC EFFECT in the BRAIN"

ncbi.nlm.nih.gov/pmc/articl...

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bepo
bepo
in reply to Parkie-

Thanks for posting this. I am learning everyday.

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bepo
bepo
in reply to Parkie-

I am guessing you still don't have the right dose. How did you get down to 100 mg 5x week? What are your symptoms?

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Biker04
Biker04
in reply to bepo

How much?

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bepo
bepo
in reply to Biker04

I'm sorry, this thread is long. What are you referring to?

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Biker04
Biker04
in reply to bepo

How much B1?

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bepo
bepo
in reply to Biker04

We started off with 2 grams twice a day. His tremor stopped right away for several hours. Then, his symptoms got worse. We gradually, perhaps not gradually enough, titrated downwards. We just upped the dosage today to 150 mg am and 100 pm, I keep a journal. I am confident we will eventually find the right dose. This morning, low tremor, lip tremor gone. We'll see about the rest. Very excited about B1!!

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bepo
bepo
in reply to MBAnderson

When we get a cut on our hand, it heals itself. From what I understand, our neurons can also heal themselves, with the right supplementation.

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johntPM

I'm 14 years post diagnosis. I'm now as happy as I've ever been: most of my symptoms are well controlled by my medication (5x75 mg Stalevo, 8 mg ropinirole, 1 mg rasagiline per day, that's a levodopa equivalent dose of 760 mg per day). Once you get a regimen that works, my experience has been that I only need to increase it about every 4 years.

What I've found is that a new symptom comes along, e.g. tremor, it gets gradually worse for a year or two, but then gets no worse. Meanwhile a new symptom comes along, e.g. drooling. Also, I find that some symptoms have unexpected consequences, so a lean (which developed after about 7 years post diagnosis) and a stoop (present before diagnosis) lead to me getting backache, limiting my walking to about 10 miles per day.

For years my worst symptom was constipation, but about a year ago I found a good way of managing that (water enemas and macrogel). This made all the difference in being able to travel to Canada, which I'd been unable to do for 6 years.

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MBAnderson
MBAnderson
in reply to johntPM

You're a 'poster boy' of success. Good for you.

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Erniediaz1018

👍😁

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pvw2
pvw2
in reply to johntPM

Given the benefit of magnesium, you might want to try slightly overdosing on it, such as with milk of magnesia, to control constipation. I don't think polyethylene glycol has any good effects other than diarrhea. Just and opinion, but follow your doctor's advise. I control constipation by eating plenty of fiber, but that probably doesn't work for everyone.

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SilentEchoes
SilentEchoes
in reply to pvw2

Use GoodSense MoM (no additives), this will also help you detox. It's inexpensive, but you have to buy it online. Vitacost sells it for less than $3.00 a bottle.

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bepo
bepo
in reply to pvw2

My husband takes magnesium, whatever it takes, and has no constipation. Earlier, he also took coffee enemas which help the liver, as well. Don't most people have PD because of toxins?

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jimcaster
jimcaster
in reply to johntPM

Thanks for the encouragement, John! What was your exercise routine when first diagnosed and what is it now? If your walking is "limited" to 10 miles, you are way ahead of me. That's impressive!

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johntPM
johntPM
in reply to jimcaster

Before the kids came along I did a lot of mountaineering. Even then I still did a lot of walking. Now I aim to walk 5 miles per day, at a speed of 4 mph. But, I don't worry if due to poor weather, I miss a few days.

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GioCas
GioCas
in reply to johntPM

Jonh, you're always a great source of enlightenment to me. Even now with these answers. Your applications are very useful.

Ty.

Gio.

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Thisissillyjohn

wow thats a big walk john i only walk less than about 5 klm but what i do to walk i also do to using different exercising things in parks here, my arms have got stronger i exercise every day 7 days a week so im doing very well i still have sciatic im hoping to go into the hospital to get it fixed ill keep my fingers crossed as i have had it a long time, well i take it this thing called green black walnut wormwood complex it works well 20 drops in about 5 spoonful of water or orange juice 2 fl.oz it lasts a long time as well its in the internet anyway try it its also good for if you have any white thick mucus that you bring up in the night .hope this helps.my age is 73 i wont let pk or sciatic get me down i found it very unfair as i had to take my drivers licence a few months ago because of the pk it cost 250 00 dollars to go for a test i did not want to do i passed the test easy i would have thought they would have refunded the money.o well no good crying over spilled milk.regards just john.

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bepo

Before going into the hospital, go to a holistic dentist who can check for infected root canals or crowns. My partner had bad back pain. He fixed the abscess, now the pain is gone and hasn't come back. My sister had four infected root canals. She suffered with back pain for years, and thought it was due to a skiing accident. Now, no back pain.

You don't feel any pain in the root canals, so you don't know if there is an abscess or not. Make sure if you do this before you go into the hospital, that you have your teeth examined with a new, 3-D xray machine.

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Erniediaz1018
Erniediaz1018
in reply to bepo

I must do this as I have lots of old fillings and a few root canals. Thank you

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bepo
bepo
in reply to Erniediaz1018

Make sure you go to a holistic dentist who knows how to get the mercury out of your mouth safely. Mercury fillings are considered hazardous waste.

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Erniediaz1018
Erniediaz1018
in reply to bepo

Thank you, I will.

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OREOLU
OREOLU
in reply to johntPM

Hi johntPM.

Your story is very inspiring, if I may ask, have you experienced dyskinesia? I f so,how are you dealing with it? What phenotype of PD do you have? Tremor dominant or non tremor dominant.Where you a young onset PD diagnosed at that time? How do you deal with the back pain caused by stoop posture? I like wise stoop,when I am off,and drag my left foot with a shuffle,during walking.Currently on C/L.

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johntPM
johntPM
in reply to OREOLU

Dyskinesia: never. I think this is because my drug regimen has some long life meds (5x75 mg Stalevo, 8 mg CR ropinirole, 1 mg rasagiline) which reduces the fluctuations that are thought to be part of the cause of levodopa induced dyskinesia.

Phenotype. Not sure about this: I have tremor, my walking is fine, but my posture is terrible.

Age of diagnosis: 49.

Back pain. If I'm going on a long walk, I make sure that I'm well medicated. I use a ski pole to act against the lean. First aid is to walk with my hands behind my back.

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OREOLU
OREOLU
in reply to johntPM

Thanks for answering all my questions,we have somethings in common, I was diagnosed as young onset too,at 50 yrs,but I have been experiencing symptoms 4 yrs before. Like they say,PD affects people differently,so the treatment is individualized.I am 4yrs post diagnosis,but still struggling with treating pain,insomnia,balance and sometimes, c/L wearing off symptom of anxiety. Hopefully, my MDS will find the best drugs combination. Thanks again.

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Erniediaz1018

👍😁

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MBAnderson

I hijacked your honeymoon question. Sorry.

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johntPM

One way to estimate the amount of endogenous levodopa levels is to run tests when you have little exogenous levodopa (or equivalent) in your body. For most people this will be first thing in the morning, just before you take your first medications of the day. I score about 40 (sum of left and right hands, 30 seconds each) when "off", but about 60 when "on".

Each action seems to have its own threshold. For instance, I can walk easily without medication, but typing is really slow until the meds kick in.

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jimcaster
jimcaster
in reply to johntPM

I'm not familiar with the typing test and/or the scoring. Can you tell me more about it?

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johntPM
johntPM
in reply to jimcaster

The side-to-side tap test is sometimes used in clinical trials as a proxy measure of PD.

I wrote an app to do it on a laptop. See,

parkinsonsmeasurement.org/t...

Using first just the index finger on the left hand you type q followed by p, followed by q ... etc, for 30 seconds. Then repeat with your right hand. A high score is good.

It is very good at measuring the short term effects of levodopa. It is not so good at measuring long term changes.

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Elizadoo
Elizadoo
in reply to johntPM

Looked at the finger-tapping instructions and tried tit myself for 30 seconds, each hand. Of course the dominant hand was faster! However, there doesn't seem to be any kind of scoring indicator. So what would be considered high, low, and normal?

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heal3124
heal3124
in reply to Elizadoo

exactly, what is a high score.?

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johntPM
johntPM
in reply to Elizadoo

The test scores are relative to the user. But, if pushed, adding the left and right scores together, a total of about 60 is typical for a healthy person. Most PwP will score between 30 and 60 depending on whether they are "on" or "off".

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Elizadoo
Elizadoo
in reply to johntPM

Okay, Got it. I used myself as the control and then tested my husband, the PwP. Your scores are right on target.

Last question: is each tap of a letter considered "1", or is each complete q-p round (meaning, hitting first the q and then the p, each one time) considered 1 tap?

I'm assuming the former, the latter is incredibly difficult, that would mean hitting 120 keys (for a score of 60) in 30 seconds!

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rescuema
rescuema
in reply to Elizadoo

It's 1 for pressing both q-p round.

Try the test offered on the site. It says to practice 10 times and then take the test.

parkinsonsmeasurement.org/t...

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Elizadoo
Elizadoo
in reply to rescuema

I did the test. According to your scoring, a person would have to hit the p and q keys 120 times in 30 seconds to get a score of 60. That is 4 key taps per second, and I can't imagine it humanly possible. I did 87 key taps in 30 seconds and I thought that was incredibly fast, my arm was fatigued. But 120? Can't be done.

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rescuema
rescuema
in reply to Elizadoo

It shows the score right there as you tap the keys.

The total score is for the 1 minute both hands combined, not 30 seconds (each hand).

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Elizadoo
Elizadoo
in reply to rescuema

Thanks. I did it the correct way (after reading the instructions in full)!

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johntPM
johntPM
in reply to rescuema

Let's get the scoring correct:

- do the left hand first for 30 seconds, pressing q starts the clock, then every time you press p followed by q you get a point.

- repeat with the right hand.

It's actually a bit more complicated than that. To take into account the fact that you might be between keys when the time runs out, the program extrapolates from the time of the last key press.

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GioCas
GioCas
in reply to johntPM

I score an average of 50 points on three runs this morning at 9.30 in off med..

Diagnosis 2014, dat scan positive 2015, first big noted tremors 2009/2010. Madopar 3 x 100/25 mg plus 100 ER in the evening. B1 2/3 injections per week 100mg with breaks when needed from 2015. If anyone is interested.

parkinsonsmeasurement.org/t...

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johntPM
johntPM
in reply to GioCas

The version of the side to side tap test that you're running is a stand-alone version with no statistics being stored. You may be interested in another version called PDMeasure:

parkinsonsmeasurement.org/P...

There the results of the test are stored anonymously, but visible to anyone. This allows you to track your results and compare them with other people.

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Cons10s

I wish I knew how to attach the video of the cartwheel I did on the golf course in Cabo last week.

My motto: live as if you are well! If you continue to put your attention on your symptoms, they will come. Followed by becoming a clock watcher. Why live like that, it’s a viscous cycle that requires you to confirm your symptoms to justify your medications, to feel better for a time being anyway. I realize many PWP need their meds, but honestly I’m not impressed with the results as a general observation.

I’ve gotten much better now at 5 years my life is very normal. I’ve past the “scary’s”. I do everything and go everywhere. Sure I have some symptoms but I view them as a nuisance now compared to several years ago. I see and feel improvement, confirmed by my family, and I have huge determination to participate in life. I don’t live my life as a sick person, I live each day in the present moment.

I take about 4 Barlowes Mucuna a day, green tea, B1, nicotine, vinpocetine, but not everyday, and a few other averdyc powders when I make smoothies. Meditate daily. I have no side effects.

Jim you’re spending too much energy on trying to determine your outcome when you could be using this energy to heal your body. By the way the micrographia I used to have is gone, as are many other symptoms. I deal with just a few symptoms now, gait, which by the way is greatly improved. Some bradykinesia when tired. A very mild intermittent tremor.

I’m sure I’ve put myself in the hot seat on this one.

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jimcaster
jimcaster
in reply to Cons10s

Thanks for the inspiration!! Great advice. For the most part, I'm focused on the positives. That said, I'm curious to know how you improved your handwriting. Thanks again!

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ParlePark
ParlePark
in reply to jimcaster

Yes, totally agree. I think Cons’s advise is terrific!

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Cons10s
Cons10s
in reply to jimcaster

My muscles in my hand are no longer so restricted, allowing more of a free flowing ability when holding a pen.

Funny I was writing a list of questions yesterday without thinking about my handwriting, when I got to the bottom of the page I noticed that my handwriting was fairly normal sized on the whole page. Not the little letters that keep getting smaller as you write.

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chantingwpd

Im 9 years post diagnosis. I adopted the “as much as I can as fast as I can” attitude early on - I retired, travelled widely, ticked off bucket list items.

I exercise regularly with a trainer, stay as active as I can, and deal with symptoms as they come. I have some tremor, dystonia in my feet, constipation, fatigue, sleep problems, pain in back hips and torso when standing and walking a lot...stiffness, depression, minor trouble swallowing, some difficulty with fluid speech esp. when I’m tired. I take two antidepressants, also carbidopa/levodopa 10-25 up to about 12 pills a day depending on symptoms (usually take less), amantadine, and C/L continuous release at bedtime. Also gabapentin prn for jumpy legs.

I lose my balance sometimes and if I’m in a hurry I’ve fallen, often going up steps - gotta lift those feet.

I was having dinner with two close, longtime friends tonight who asked about my health - they both commented that if they didn’t know about my diagnosis they wouldn’t know anything was wrong. (Well, i know something’s wrong, but I guess my point is live your life full on and cope with whatever comes!)

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jimcaster

Very encouraging! Thanks!

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glenandgerry

My husband was diagnosed in 2005 at age 51.5. His honeymoon period lasted around 7 years. By 2014 we realised he couldn't continue to run our family business so we had to sell it 5 years ago. It was only then I hadctime to research PD and became aware of the importance of diet and exercise. Unfortunately that was too late as Glen has had osteoarthritis since the early 90s & has had 2 knee joint replacements which meant his mobility was very poor (as is his diet!) He tried some light exercise for about 3 years but 2 years ago suffered terrible back pain so had to stop. After several injections, a spinal op and many pain killers, the consultant says there's nothing more he can do. Glen has now been referred to a pain management team. I think his pain is somehow related to his psychological well-being as well as physical because we just came back from a wonderful family holiday where he didn't once mention pain. However within 24 hours if being back home, he was again complaining of pain.

He takes sinemet (but not quite as many as prescribed), strong painkillers plus loads of supplements including Vit B1.

I wish he would do more to help himself and be more like Cons10s but he is stubborn - mindfulness & meditation is just not his nature unfortunately.

Apart from pain, his main symptoms are tremor, bradykinesia, stiffness & sometimes dyskinesia. He can walk short distances using a crutch but when we travel (e.g at airports or when there is no car), then he uses a wheelchair.

He has just started with a few balance issues and has fallen once or twice. I read here on HU the other day that nicotine may be good for that, but I need to do more research.

Since taking Vit B1, his voice is stronger & the constipation is generally under control. He can still type on the computer keyboard but he finds writing difficult. Recently he's had a lot of phlegm but I'm hoping that's just 'seasonal'. I've been giving him quercetein/bromelain for that & it seems to be helping.

Sorry for the long post, it's been a long PD journey so far.

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Elizadoo

My husband, although older, sounds much like yours. He says he wants to "get better" and he is willing to eat or ingest whatever I put in front of him, but in terms of taking any action, nope. He will sit in front of the TV or computer all day, maybe take a stroll around the yard once or twice. He believes it's not due to Parkinson's but to age. When I point out that my parents are 10 years older than he is and 3x as lively (yet overweight and with poor diet) he just chuckles and tells me that he is doing just fine. Ha! He shuffles, has poor balance, tremors that don't respond to levodopa, slow reflexes, constipation, no strength, and he calls himself "just fine".

It really makes me angry to see my partner cheating himself like this.

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Cons10s
Cons10s
in reply to Elizadoo

Now, now be careful. I can tell you this is a very difficult disease no doubt. Not everyone is equipped to face it full throttle. Your last sentence includes some rather harsh words. You truly can’t know how it feels to have PD.

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Elizadoo
Elizadoo
in reply to Cons10s

No, I don't know, as I am not the PwP. But I can still feel anger, it's okay to be angry and sad about this. It seems there are 2 types of people: those who think they are young and have young attitudes, and those who act old and resigned--even if they have no health issues. My husband is the latter type. He does not believe a patient should advocate for him or herself, he believes his job as a patient is to sit quietly and listen to the doctor. To never speak until spoken to, and only answer the specific questions the doctor asks. He says, "the doctor is the professional, the doctor knows everything about this. I know nothing." No curiosity about anything for self-care, whether it is diet, vitamins, medication, exercise. My spouse has always had this attitude about health, even when he was 40 and healthy, but it has become worse with age. My parents have always been the other type, they ask lots of questions, look for complimentary or alternative treatments.

I can't blame the Parkinson's because I am reading here that many have much more serious Parkinson's, but they still have a responsible attitude toward their health.

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Erniediaz1018

That’s right. The most harsh statement That’s come out of my wife’s mouth is why don’t you just try. 😳 I think wtf don’t you see me trying lol. You can never tell what a person is experiencing especially with PD

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RoyProp

After epidural steroid injection I have been two years free of screaming pain

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glenandgerry

Glen has had around 5 steroidal injections over the past 6 years but only 1 gave him some relief for about 18 months

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Dap1948

I am ten years post diagnosis. I'm really well! Everyone remarks they can't see I have pd. I feel better than I did the first five years after diagnosis. I take 2x 100mg ldopa, which I've been on for five years. I take B1 and I exercise. I have a slight tremor if I don't take the ldopa. I have no other symptoms - no rigidity, no sleep problems, no constipation, no gait problems, no fatigue etc. I AM LUCKY! I am 71 and still teach and play piano, I train a choir, paInt and am learning Italian. I write this not, I hope, to boast but to dispel the five-year honeymoon theory.

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jimcaster
jimcaster
in reply to Dap1948

You continue to inspire me!

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sue2000web

12 years post diagnosis. Three years with rotigotine patches then Siminet for two then rasagiline. First symptoms tremor in right hand.and unsteady Siminet took tremor away almost completely. Best thing ever now is 2000g vit b1. See dr Constantini on you tube. All symptoms gone. Have been on regime along with existing meds for 2 years now. Feel back to normal.

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Pitchfixer

I experienced about a six-year honeymoon During which the symptoms of Parkinson’s – in my case, a left hand tremor - were almost totally hidden by the drug therapy I was taking. Over the past nine months, however, I have felt like Dr. Strangelove, as the symptom presents itself seemingly at random. I am eager to have it controlled by ultrasound.

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SilentEchoes
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jimcaster

Thanks for sharing! Focused ultrasound seems to have become one of our most promising forms of therapy.

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Elizadoo

My husband the PWP seems to have a decline that is like a staircase (going down) graph. A new symptom, then it stabilizes for awhile. Then another new symptom or more debilitation, then stabilization. On good days he can go back up a stair or two, but never to the top of the staircase where he once was. On bad days I can see him going down, down....

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bepo

You didn't mention if you are on B1. My husband has been on B1 for about a month. He was diagnosed in 2014-15. He has taken mucuna. Now, his tremor has mostly gone away. All his non motor symptoms have improved, as well. No drugs!

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jimcaster
jimcaster
in reply to bepo

I have been on B1 since May, 2018, which was the month I was diagnosed. I'm not on medication but I am taking many supplements.

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bepo
bepo
in reply to jimcaster

Sounds fantastic!

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jimcaster
jimcaster
in reply to bepo

Part of what motivated me to inquire about the rate of progression was to see if my experience is typical. I'm nearly two years post diagnosis, not on medication, and I don't feel bad at all....I don't know if I'm doing well because it's too early to tell or if it is B1, or if it's exercise, or if it's other supplements, or if it's blind luck, or if it's some combination of some or all of those factors...

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GioCas
GioCas
in reply to jimcaster

A strong will to survive always leads to doing the best things.!

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rescuema
rescuema
in reply to jimcaster

You started the B1 therapy at the ideal time so it may continue to stop the progression - that's what Dr. C noticed in his patients, and for people who began early, they were able to stay off medications. Many say the honeymoon countdown starts once you begin the pharma P meds, so I believe your experience will stay atypical for the better. It sounds like you're doing everything right.

1 like
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jimcaster
jimcaster
in reply to rescuema

Thanks! We're all doing our best. 😊

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jimmydook
jimmydook
in reply to bepo

How much b1 does he take?

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bepo
bepo
in reply to jimmydook

Right now, we're still experimenting. He has been on it for a month. He started out at 2 grams 2x day. We kept lowering it. Since his symptoms aren't that bad, we moved fairly quickly down to 100 mg 2x day. Next, we will try 150 mg am, 100 lunch. I keep a log of symptoms. Maybe, he only needs 100 2x a week? We just have to keep playing with the dosages. He is not getting worse, just some symptoms have come back. His tremor is better.

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GioCas

Jim,

just to be sad today I brought flowers to a very beautiful 18-year-old girl who died of kidney cancer within a year or so.

Just think, a few deviated cells produced by the body grew so numerous that she died in a short time.

Cell life is amazing.

Imagine if the same thing happened with dead dopaminergic cells, i.e. they started to reproduce again an grow in the brain or were printed in 3D by a printer and replaced.

Sure it's science fiction, but if you can see it, you can have it.

Something good can happen!

Every projection is statistically wrong because it doesn't consider the new discoveries and the will to survive of PwPs.

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Elizadoo

Slightly off-topic but still of interest here, I think...

As the Parkinson's progresses, does the PWP realize he/she is moving slower and doing everything more slowly? In other words, is he/she aware of the bradykinesia, when compared to others? My spouse doesn't seem to realize he is slower, he is always saying that I am going too fast or I am speeding up. He thinks he is just fine, it's everyone else around him that is in fast motion. Is this common?

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GioCas
GioCas
in reply to Elizadoo

he knows, deep down inside, that's not the way it is.

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Erniediaz1018

Yup I’m 6’2” and weigh 200 lbs, did construction work all my life and never noticed I was slow, but my coworkers always seemed to think so.

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sparkyparky

Hi Jim. I was diagnosed in April 2012, so 8 years ago in April. I had very minor symptoms at first, slight numbness on my left side, no arm swing as I walked and a slightly dragging leg. I still have no tremor or micrographia and have kept my sense of smell intact.

At first I was prescribed Rasagiline and advised to take the supplement Selenium with vitamins A, C and E. I am a bit of an exercise fanatic and was exercising lots ( Nordic Walking twice a week, Personal trainer once a week, PDWarrior once a week, yoga, Irish set dancing and boxing) and my PD didn't progress at all during that time - that is, it probably did in my brain, but not in terms of my behaviour.

I was prescribed Sinemet after about 3 years because the neurologists thought my walking wasn't good. I wasn't very happy about that and I had read about Mucuna Pruriens, a naturally occurring plant which contained high doses of Levodopa. I had been prescribed Sinemet at a dose of 125mg x 3 daily. Using Mucuna to "top up" instead of my Sinemet intake, I reduced the amount of Sinemet, using a pill cutter, to 0.25of 125mg that is about 30mg instead of 125mg.

This worked well until last year, so 7 years on, when I realised I was experiencing "off"periods, when the medication didn't last very long and sometimes seemed not to work at all. I struggled to get the medication stable and that struggle lasted for most of the year. I chopped and changed medication, too impatient to give anything a chance to work, mixing prescription drugs with Mucuna and anything else the internet threw up - CBD oil, Mannitol, Co-enzyme Q10, vitamin B12, Turmeric, vitamin D, Alpha-Lipoic Acid, Carnitine, - never giving anything long enough for me to be sure that it was working. Also I introduced things together, so it was impossible to tell what was being caused by what - very unscientific.

This year, I have stabilised. ( well, it's only 8th January ...!) Medication is now required every 3 hours ( it had gone down to 2.5 hours and even then sometimes took an hour to kick in!), I have "warning signs " that my next dose is due ( tinnitus, a tightness in my neck, a painful tingling behind my knees) and as long as I don't ignore it, all is well.

So in summary, the progression of my Pd was erratic, not progressing evenly but coming in bursts. I know I am worse than in 2018 but in 2019, my symptoms seemed to speed up significantly. Since Christmas, that has slowed down.

I hope this is of help to you. As you say, everyone is different.

Good luck!

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jimcaster

Thank you very much for the insights! I hope 2020 is a great year for you!

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bepo

My husband has done extremely well on mucuna. If I were you, take B1 first. If you are taking B1, go to Dr. John Gray's journey with PD. He used Marty Hinz's protocol, which is what we use, as well. Mucuna and L-tyrosine and 5-htp all work together synergistically.

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MBAnderson

I hate to break it to you bepo, but "Dr."John Gray is a stone cold fraud. I bring this to your attention because your husband's health will be better served if you ignore John Gray.

He's a chiropractor who got a PhD via mail order off the back of a matchbook "university" that was closed down by the state of California courts as being fraudulent which then moved to a PO Box I think in Washington state.

Unlike Anthony Williams, Who gets his nutrition advice from a spirit/ medical medium and pulls wild assertions out of his ear, John Gray's every utterance is bull sh*t.

He had a video and a blog, which he has since pulled down, wherein he explained how he cured himself of Parkinson's with his super shake that he sells for $130.

rationalwiki.org/wiki/John_...

therebuttalfromuranus.wordp...

Gray has become a multimillionaire by conning vulnerable people.

He actually belongs in jail.

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MBAnderson

Here's a recent letter from the FDA delineating some of the good doctors false claims.

fda.gov/inspections-complia...

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