Parkinson's Movement

18,078 members18,267 posts



hello friends,

is there people who never progress to severe symptoms of PD?

i saw a lady at my Dr office who has had PD for 20 years and she is 82 yrs old.she was doing great and seemed to be in better shape then most i have seen. the Dr said not everyone experiences the same symptoms and or severity. Is this really possible

45 Replies

I hope never to progress. I pin that hope on allithiamine. Being five years post dx and today only mild symptoms. Earlier years I would not say mild symptoms.

RS313 in reply to RoyProp

what is Allithiamine?

is it RX or natural

RoyProp in reply to RS313

It is a particular type of B1 vit

RS313 in reply to RoyProp

where can i buy it and do you take with PD meds

can you give me some details about it by chance ty for the info i am scared to take the PD meds

RoyProp in reply to RS313

Buy it through Amazon.

My: regimen

C/L? Little faith in it. At four o'clock a.m. I take one ER 50/200 and I take two at four o'clock p.m. By choice. My neuro prescribed 3X/day but I adjust what and when I take. C/L does nothing for me. No effect. But I fear not taking any may be harmful in the long run.

My regimen:

1X / day:

MiraLax limited use. Only when two or three days pass w/o movement. NOT daily.

High Potency B-Complex w/ vitC

1200 mg Calcium w/ 1000 iu vitD3

1250 mg Magnesium Malate

2X / day:

99 mg Potassium, 4 caplets (99mg each)


100 mg allithiamine

2 or 3X/week:

Aleve - one tablet only/day

sagewoman22 in reply to RoyProp

Thanks for your post of your regimen as it helps me to make better choices in my daily routine. I do take the B1, and glutathione and find that it's helpful. My main problem is insomnia. My neurologist prescribed antidepressant but not sure if it would help. Any suggestions?

RoyProp in reply to sagewoman22

no sleep remedy

racerCP in reply to RoyProp

RoyPop, instead of Miiralax I eat Adventure bread, which I bake once a week. One slice of that, which is delicious, with plenty of water during the day takes care of everything.

Also as a snack I cut up a jicama and place it in a storage container and use it as a snack. Jicama has high fiber and high liquid content but also has inulin (sp) a particular form of fiber which is effective and manages sugar.

That's it. (recipe for Adventure Bread is on the internet.)

Have you tried melatonin ?

Yes I take melatonin every night and have tried different brands and amounts.

park_bear in reply to dentonpark

I used to take it until I discovered it *more than cured* the constipation.

grower in reply to sagewoman22

I take an antidepressant to help with sleep but it's at a tiny dose, nortriptyline 10mg , when it's used for depression it's around 100 gms. I thankfully sleep fine more often than not now.

Valerian root capsules help me with insomnia. I take 3 x 500mg at bedtime. If you are not familiar with it valerian root has an offensive odor one learns to ignore. Fortunately they do not impart that odor to the taker.

RS313 in reply to RoyProp

so you take the allithiamine 2x a day but only twice a week?

RoyProp in reply to RS313


RS313 in reply to RoyProp

ty so much for sharing your regimen Roy

AmyLindy in reply to RoyProp

I like ur simple answers and descriptions . THx Roy P🤗

Mlitt0818 in reply to RoyProp

Is "ER" extended release?

RoyProp in reply to Mlitt0818

I think so. Doc did not say.

RoyProp in reply to RS313

No need to be afraid of C/L

Doc. Stanley Fahn

World-famous leader in movement disorders, Dr. Stanley Fahn was the keynote speaker discussing myths and misconceptions in PD, and several members of the University of Florida Center for Movement Disorders and Neurorestoration also spoke and participated.



Myth 4. “No response to Sinemet 25/100 three times a day is considered a non-responder.”

a.Each person should be treated individually and each may require a different dosage of Sinemet to get a response.

b.Some physicians fail to push the dose after it reaches 300 or 600 mg/day.

c.My “limit” is 2,000 mg/day.

RS313 in reply to RoyProp

ty i will watch this for sure!

Opt8 in reply to RoyProp

I watched Doc Stanley Video. Very helpful info. Thank you for sharing. I see there is a balance to treatment options.

Rosabellazita in reply to RS313

Me too

REDLIPS44 in reply to RS313

I am going to try this for my MS I have tingling and numbness in my feet.

racerCP in reply to RoyProp

RoyPop, can you expand on your response and the vitamins or meds you take that you feel have kept noticeable progression at bay?

RoyProp in reply to racerCP

allithiamine, 100mg, 2X/day/2X/week: My vision improved and strength increased as evidence of ease of entering and covering myself at bedtime. It gives me hope. and I can brush my teeth with my right hand without my hand "freezing". Normally I brush my teeth with my left hand or use electric tooth brush. Yesterday I caught myself brushing using my right hand. I was surprised. I thought before I tell my wife the good news I will wait and see next time. Next time was the "proof in the pudding". Add that to and thank allithiamine.

iqbaliqbal in reply to RoyProp

Do you take oral B1 or


RoyProp in reply to iqbaliqbal

Oral - 100mg 3x / daily

iqbaliqbal in reply to RoyProp


RoyProp in reply to racerCP

"...Oral administration of lipid-soluble allithiamines [thiamine propyl disulfide (TPD) and thiamine tetrahydrofurfuryl disulfide (TTHF)] rapidly increased thiamine activity in whole blood, red blood cells, cerebrospinal fluid, and urine in normal and thiamine-deficient subjects. These thiamine congeners also restored red blood cell transketolase to normal in alcoholics with thiamine deficiency. Such repletion equaled that produced by parenteral, water-soluble thiamine hydrochloride (THCl) or thiamine pyrophosphate (TPP). Oral administration of water-soluble thiamines (THCl, TPP) neither elevated thiamine activity in biological fluids nor restored transketolase activity to normal in alcoholics with thiamine deficiency presumably due to their rate-limited intestinal transport. Oral administration of TPD eliminated lateral rectus palsy in patients with Wernicke's encephalopathy. Orally administered allithiamine vitamers are therefore recommended for prophylaxis and treatment of thiamine deficits because while having essentially the same biological properties as parenterally administered water-soluble thiamines they have not produced any untoward effects after long-term administration and are far more efficiently utilized."

I was dx 10 years ago symptoms for 15 years. I take medicine but only as symptoms arise. Stress management is a must. I have had 2 tia attacks in the last 6 years and I take multiple supplements to keep symptoms at bay. I will be 50 in February and most people cannot tell that I have PD. Every one experiences PD differently so always consult with your primary care physician and your neurologist for medicine adjustment and supplements advice.

RS313 in reply to kenteoth

great advice ty!

nourilo in reply to kenteoth

What supplements do you take?

RS313 in reply to nourilo

I dont take any yet... just sinemet 25/100 3 x day

kenteoth in reply to nourilo

Co Q 10, multivitamin, low dose aspirin, Omega 3 fish oil, Glucosamine w/Chondroitin, Red Yeast Rice (600mg), and Magnesium (500mg)

11 years with PD don't know how for i have progressed. I stay medicated 24/7 and have very little down time.. My DR said i have a mild case. But to feel normal i must take

3 25/100 carbidopa levodopa 8 times a day. And 2 6 mg Requip 24 hour release once in the morning. The requip fills in when the carbidopa levodopa does not work.

Skme in reply to Bailey_Texas

Have you experienced dyskinesia?

Bailey_Texas in reply to Skme

yes on occasion some times it last for 30 minutes. Most of the time 10 minutes or so. Well worth it for the relief it gives me.

I am also 82 years of age and my Pd symptoms started in 1963, 54 years ago. I have been doing lots of exercise in the gym and over the past 24 years I have been doing fast walking, which has enabled me to stop taking Pd medication since 2002.

Read my profile and start to take control of your life again.

Did this lady you mention do a lot of walking?

RS313 in reply to JohnPepper

no she rides a stationary bike like me.That is why i am trying it i have balance problems and limp a bit so fast walking wouldnt be good for me i dont right foot drags from a previous stroke

JohnPepper in reply to RS313

Without sounding like a know-all, the balance, limp and dragging foot sound to me to be the same problems I had at the time of diagnosis. Only when I learned how to use my conscious brain to control my walking did these symptoms disappear.

Pd appears to affect most movements we make subconsciously. We don't normally thinks about what our legs and arms are doing, when we walk, or write or bring food to our mouth. Our subconscious brain does all that for us. At least it used to! Now, with whatever goes wrong, since the Pd started, we have to try to consciously control those movements.

If you don't believe me, then just take note of the length of your step, when you are walking. Then, with somebody holding one of your arms, put all your weight on one of your legs and see how far you can stick the other leg out in front of you. I'll take a bet that you are able to stick your legs out much further in front of you than you are doing while you were walking!

So, what is different? When you walk now, your subconscious is controlling how far your legs move out in front of you, but when you did this little test you were consciously moving your legs out in front of you. So, why can't you consciously move your legs when you walk? The answer is that you can!

What do you need to do to learn how to consciously walk? All you have to do is get someone to hold your arm, while you consciously practice moving your legs and arms properly. It takes about a week or two to do it on your own, without falling. Why would you not be falling? Because you are now consciously placing your feet out in front of you. You place them in the right place and that means that you stay in balance. When you shuffle and walk badly you often are off balance.

Why would you stop limping? Because when you walk properly, you are supporting your full weight on the ball of grounded foot. Often, it is just the one leg that is affected by the Pd and that one does not work properly and the other non-affected leg carries the full weight of your body, while the affected leg does not, which makes it look as if you are limping.

Have a look at my profile and go to my website and read up all the articles on walking and exercise. You'd be amazed at how much better you will be when you have learned how to use your conscious brain to control your movements. There is no need to buy my book as you can see everything for nothing

I have seen that, too. Some people then think that it's not a big deal to have PD. However, if one has PD, and it affects many things, such as head shaking, hands rigidity/shaking,, trouble with walking, freezing in place, constipation, sleeping difficulties, trouble swallowing, urinary symptoms, balance problems, all four extremities affected, peripheral neuropathy in hands and feet, depression, etc. like me, then it's a daily struggle each day, just to make it through the day!

I walk 1 mile everyday even if I limp

Be very happy and thankful, if you are one of the lucky ones, with mild PD, where it doesn’t progress much, or affect your daily life to the point that you have problems most of the time. I have known people who have PD and are doing fairly well. Unfortunately, for me, I wasn’t diagnosed unti I was in Stage 3; therefore, every day is problematic. I try my best to remain positive, because I’ve never been the type of person to feel sorry for myself!

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