Stage one

[Rabilo]

Guys how long averagly stage one lasts? P

[Hidden]

Stage 1 ? See prognosis graph early into this video. The prognosis graph at the very beginning was a real education for me. I will not be able to judge my thiamine treatment route until after the first six years from dx. I have only just reached the end of year 5.

youtu.be/M9UEihoEaDo(Not working as expected?)

[Rabilo in reply to Hidden]

Thanks a mil, im new to this and confused whats the progression rate! Which stage are u?

[Hidden in reply to Rabilo]

Stage 1. See prognosis graph early into this video.

[Rabilo in reply to Hidden]

It says stage 1 lasts 2 years only! Is that correct? But you are inti your 5th year and stage 1... whats your secret?

[Hidden in reply to Rabilo]

I do not believe the "only". Everyone has different experience. No secret, just my own personal experience. I have completed five years since first tremor appeared and first dx.

My wife notes that my motor symptoms are less than in past years. I agree with her observation.

[Rabilo in reply to Hidden]

Whats your medication if u dont mind me asking?

[Hidden in reply to Rabilo]

1 x day 1250mg Magnesium Malate

2 x day 250mg Mega Benfotiamine

2 x day 50mg Allithiamine

3 x day C/L ER 50-200mg (but I choose to take 1 in a.m. and 2 in p.m.)

1 x day 1200mg calcium plus 1000iu Vit D3

1 x day High Potency B Complex w/ 500mg vit C

2 x day 99mg x 4 Potassium Gluconate

[bcowart in reply to Hidden]

RoyProp,

How did you come up with this regimen, and what symptoms did it treat effectively for you?

Thanks very much. I"m just beginning to research the supplements that are helpful. I don't see NAC in here.

[Hidden in reply to bcowart]

B1 Thiamine therapy reference:

(benfotiamine and allithiamine are oral substitute to IV B1 )

Doctor Costantini remembers that helping his very first patient, afflicted by an acute ulcerative, set him on the path towards countering Parkinson’s disease. He advised her to inject herself with two mg of Thiamine per week. “In the first 15 days of the therapy the patient was relieved of exhaustion, irritability, pain in her feet and calves”– says doctor Costantini- “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine.An important detail”,adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

ultimaedizione.eu/costantin...

ultimaedizione.eu/astonishi...

I am thinking positive. Needs more time. My good condition may be due to slow progression. No negatives. The positives: no button difficulties, brush my teeth now w/o needing elect brush, more strength, no increase in tremor.

Slow progression: 5th year and have not fallen to the surprise of my neuro, was seeing neuro every 6th month, last month he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

[Hidden in reply to Rabilo]

Starting today - 1 x day Renew Life Ultimate Flora Adult 50+ Probiotic 30 Billion Supplement

[Astra7]

No one can tell you but I reckon you get 5 good years, 5 where you have to take more meds but can still live a normal life, 5 where you take lots of meds and have to make lifestyle changes and 5 where you are basically stuffed and reaching for the Nembutal.

I plan to spend all my money based on this theory!

I hope lots of 20 year PD people disagree with my post!!

[JohnSvensk in reply to Astra7]

I strongly disagree. I was diagnosed some 22-23 years ago, and I am right now sitting in my powered wheelchair, on the commuter train to Stockholm, on my way to the 12 o'clock CrossFit class at a great gym. I have reached the "advanced" stage of PD, but I have a couple of good hours between 9 am and 3-4 pm. I make the most of them! The intense workout does wonders for my energy levels, plus my strength and balance are good! (I'm 48 BTW, 26 at dx)

So: live life as long as you have it, it really sucks some days but there are pearls to be found still!

[Bailey_Texas in reply to JohnSvensk]

great to hear from some one that also does crossfit.

[JohnSvensk in reply to Bailey_Texas]

Ah, a fellow cult member, haha! 😝 But seriously, it is a great workout, and the coaches always find workarounds for movements I can't do.

[ddmagee1 in reply to JohnSvensk]

JohnSvensk, I like your attitude!! Keep up the good work! Enjoy the pearls when they come, and never, ever give up!

[12Maxwell3 in reply to JohnSvensk]

What an inspiration to me. I’ve been diagnosed 6 mo ago, and trying to do as much exercise as I can, which isn’t anything like what you do.

Thank you!

[JohnSvensk in reply to 12Maxwell3]

Just keep going! It takes longer for me to learn more complex movements, and some are impossible (like rope jumps), but my coaches swap exercises as needed. 😊

[Astra7 in reply to JohnSvensk]

Really happy to hear you are still going well after so many years. Very inspiring.

[munchybunch in reply to Astra7]

That's interesting ! I read somewhere that the honey moon period lasts for 5 yrs then things get tougher!

[Bailey_Texas]

I just have one question for you. Why do you need to know what socalled stage you are in. Parkinson's "is like a box of chocolates you never know what you will get". At 12 years diagnosed and 30 years total of what i now realizes was minor but tell tale signs of PD i just take my pills and get on with life. Please don't let Parkinson's consume your life. At the 10 year mark i was ready to give up. I could hardly feed myself , i could walk maybe a half mile running was out of the question. At that point i thought i was in the last stage of Parkinson's and ready to start using a walker and a wheelchair. But a new Doctor and new drugs i now go from 3 am to 8 pm most days. I buy and repair and sell riding lawn mowers (65 in the last 12 months). I maintain my home on 2 acres of land. I just finish (with my wife's help) laying 900 square feet of floor tile. Took me about 5 days total. What stage would you put me in.

I do take a lot of meds. 3 25/100 C/L every 4 hours 24/7 and 2 Ropinirole 6mg ext release at 5 am. 1000 mg of B12 and 500 mg vitamin C.

[Rabilo in reply to Bailey_Texas]

Im just 43 and have two kidz... im very scared of disability and not being able to look after my kidz. Plus not knowing how fast this progress gives me a lot of anxiety. Thats why I thought to ask the community here and see whats waiting around the corner and get ready for it physically emotionally and mentaly. Im proud of your strenghth though.

[Bailey_Texas in reply to Rabilo]

I guess the better answer would have been nobody knows. If you do not exercise start today and that will help you deal with the future. My i suggest that you take it as it comes. How old are your babies, My babies are 44 and 42 and i still worry about taking care of them.

[Rabilo in reply to Bailey_Texas]

They are 14 and 12

[anna1060]

A DaT scan confirmed my neurologist's diagnosis yesterday of Stage 1. Symptoms have been around since I turned 78, two years ago. Does Parkinson's advance more quickly in an older patient? (I will be taking Azilect.)

[ddmagee1]

Rabilo, Welcome to this forum. I hope you can benefit from some of the communication that PD patients share with others afflicted with this neuro-degenerative disorder. When one is first diagnosed with PD, and, especially, when one has a young family, it is a big concern that disability could impact the ability to take care of children. I understand that, and it is scary to think about. It’s important to understand the process of neuro-degeneration and the patho-physiology of this ailment, in order to grasp the fundamental process of “stages” of “Parkinson’s”. Actually, I believe Parkinson’s is a name for several strains of the disease process, because each person’s path forward is as different as snowflakes are different. Symptoms of smell and taste being off and then balance a little off, along with a slight tremor on my left side, were, seemingly, my first symptoms. These slowly got a little worse over a five year period, and it was easy, but annoying to live with them. My doctor thought it was benign essential tremor, and didn’t seem too concerned. The next four years I developed a rolling pill tremor in my left hand, where it gradually became noticeable while my hand was resting. Also, I had a little blurry vision, ringing in my ears, constipation, and walking seemed to become a bit stiff and slower. Again, my GP doctor didn’t seem overly concerned. I knew nothing about Parkinson’s, so I had no idea that this disease was creeping up on me. Gradually, what was happening, is that neuro-degeneration was occurring in the substantia nigra part of the brain, where dopamine is produced, needed for motor movement. Then, over the next two years, , I had worse tremors, now tremors starting in my right hand. Then .I had moments, when I sort of just stood still and could hardly move for about a minute. One time I fell forward in the street, and couldn’t stop myself. I had blunt force trauma, concussion, hematoma, 2 black eyes etc. The Dr. put me through brain scan, EEG, heart echogram, MRI, and still no definite answer. By this time, my head was beginning to shake, also, and my walking became more difficult. We lived in a small town, with no specialists. That year we moved to a bigger city, with a regional medical center, and, right away, the family doctor saw that I was having problems, do he called the neurologist right away, when I was in his office. The neurologist gave me tests and put me on a trial run of levodopa, which helped, so I was diagnosed with PD. So, as you can see, diagnosis isn’t always easy and sometimes, people are not diagnosed until they are past the beginning stage. So, for me it’s been about 10 years, since I had my first symptoms. I still get around and get things done, but I can’t stand or walk for long periods of time and I am somewhat compromised in other ways. Levodopa is helpful, at this stage. Only a trained neurologist and/or movement disorders specialist, could make the best determination as to the rate of how you are progressing,and how you should prepare for the future. Many people have many years where they function well with PD. Again, it is dependent upon where and how much neuro-degeneration has occurred and is occurring in one’s brain, as to the staging and disability rating for a person diagnosed with PD. Wishing you the best!

[alexask]

I think a lot depends on how you approach this:

My Regime:

Mannitol (you absolutely must at least try this - yes it will make you runny, hold it in to exercise the vagus nerve. You can get it on the internet - it is not expensive), Exercise, Coconut oil, Low carb, high fat diet where possible. ( Imagine your brain has now become a diesel engine. Carbs is petrol. It can't cope very well with carbs).

Avoid milk especially skimmed and semi-skimmed (reduces uric acid levels). Cheese I think is OK.

Avoid sugar , biscuits, chocolate.

Exercise is absolutely key- Stationary bike. Gym when I have time. Need to do 50 minutes cardio + 40 minutes non-intense activity pretty much every day.

Social activities also help immensely. Beer helps raise your uric acid levels. But not too much beer - alcohol can lower your magnesium levels which result in poor sugar control

Watch some comedy before bed. Read an historical novel which details how bad life was back in the 19th Century/ World War 1/India/France etc. Thank your lucky stars you were not born then. Or Syrian now.

Also take Vitamin b1 with coq10, curcumin with pepper.

Vitamin D + K ( comes with calcium for some reason). Or go out into the sunlight at Midday and eat Brassicas

Take Magnesium Citrate as well.

Take Melatonin sometimes but not sure this helps that much or at all.

[arwenmark]

My husband was diagnosed in 2012 and is now in stage 3/4. PD is VERY individualized, he is now 67 by the way.