great article Gerry thx!
ping pong anyone ? western modeled medicine isn't so much that it is so linear (monolithic) that it doesn't observe various patterns of pathos but rather it doesn't take into account the subtle energetic layers of our physiology. Cell biology is being revolutionized by the science of epigenetics for example which renders genetic expression of disease dependent on consciousness or the "field" being the determining factor . Wouldn't this add a whole new set of variables to the biomarker research?

We all know that taking drugs basically results in trading one set of sx for another....sort of like squeezing a balloon and eventually we end up paying the piper . Most of healthcare profits arrive on the backs of the elderly prolonging a torturous slow death .

Hi Moondaughter. I have just read on this thread that you lasted 11 years without meds. That´s some feat! What were you like at the end of that time and what treatment did you try first? How did you respond to it? I hope you
don´t mind all these questions! It´s just that I am at that point now.

Thanks for your interest ladybird

At the end of the 11 years I was lying on the floor most of the dayexhausted and in deep pain, had a severely frozen shoulder, dropped foot, could walk 100 feet or so , couldn't ride in a car because it was stressful , was able to delegate housekeeping tasks to a helper, was cognitively a bit quicker than i feel now, small motor tasks extremely difficult , couldn't drive and thought i'd never be able to wear a pair of levis again because incontinence neccessitated i wear loose fitting dresses.

HOWEVER- I was actually doing pretty well for the first 9 years since the tremor started...at the 11 year mark my husband suffered a debilitating stroke which then I had to do some intensive caregiving (still do but its better) for several years and we were in a lawsuit over a land dispute that threatened loss of our home AND I was menopausal. These events took the rug out fromm underneath ( so to speak)

I was 36 when a visit to the dentist office triggered the beginning of my thumb shaking ....my favorite doc at that time was a chiro and I was doing "NEC" or Neuroemotional Complex work with him often - he first dx me with essential tremor but soon realized i was losing strength and presented also with cogwheel rigidity so sent me to a neuro who's opinion was that cogwheeling together with tremor was "definitive" pd and subsequently prescribed sinemet which i was not even tempted to take...I was actively pursuing my education in homeopathy in those early years so I sought homeopathic treatment from 3 world class homeopaths - and i did well ...was able to keep sx at bay ....I then went to a NUCCA chiro for a year (still do on occasion) but not completely so then i did a year of acupuncture treatments -was better but then got much worse and went back to a homeopath - which helped me alot but then found Janice Walton -Hadlocks' Parkinsons Recovery protocol and did that ....It was a lot of travel and funds ran out so then I did what was known as "Aphysical Dimension Access Manager" - created by a scientist who also had particiated in cold fusion experiments. That treatment culminated in a dream where i was in a struggle with this ghost like thing that was "death" and i had named it parkinsons and it had a grip on my heart but finally released its hold. On occassion I would seek diagnostic updates using a QXRI (very sophisticated biofeedback machine) for reccomendations for supplements, herbs, essential oils. Also did regular cranial sacral work as well from various practitioners sometimes even 3 at a time! Also I have done biofeedback and been treated by shamans. I have been to a neuromuscular dentist and had a mouthguard fitted which helped as well. I received three degrees of Reiki attunements.

After my husband had his stroke and caregiving demands were great my pretty stable condition went south - I started small dose of sinemet and it took several months to get back on my feet but now I've been on low dose for 4 years altho recently have increased dosage from 1 25-100 two times per day + 1 10/100 once per day (total 300 mg levadopa/day) to 400-500 mg levadopa per day (its that time of year) -also i do meditation, exercise, qi gong, and gentle restorative yoga AND a BIG help is fava juice - I can't reccomend it enough! Each Spring I order fava pods from local grocery store (about 150 lbs per year) and juice the pods (not the beans) then freeze the juice in jelly jars and drink 1/4 cup with morning sinemet dose. I try to get 2 massages a month and also take magnesium and eat lots of fresh fruits, vegetables, good quality altho small quantity meats and also coconut and olive oils and occasional glass of wine. The fava juice really smooths the sinemet -it seems they are synergistic and i feel has made a huge difference. Also I have an "earthpulse device" for sleep enhancement.

my community is sort of shocked - they look at me now and shake their heads (sometimes cry with joy) and ask me what in the world did i do?? Now I'm for the most part highly functional-- I tell them i have a lot of help - a lot and the love and prayers are perhaps what are at the root of all of it and of course the small dose of wonder medicine sinemet which i keep to a minimum. One last but one of my greatest healers is my pixiebob kitty Misha who watches me like a hawk and gives me daily heart therapy often laying her heart right on mine!!

my next step is to see the "Foot whisperer" Randy Eady whom I must travel to Florida for. Also i am encouraged by recent qi gong exercises

hope i didn't bore you with all this - basically i waited till i had nothing to lose before i started sinemet...l have no regrets as i feel that everything i've done has led me to where i am now ( 19 years since tremor began and pretty normal mostly except once in a while i can feel a bit tired and shakey and small motor challenged - )but able to metabolize the med well ( been on sinemet for 4 years now )-and i can't help but think that all this other stuff i've done has facilitated that. Many sx have come and gone - I no longer have a weak voice or stooped posture. I have regained full range of motion in my shoulder and am able to relax deeper than ever in my life have been able.

i try to remember that with the challenges come the gifts and be grateful for the parkinsons - it has driven me to a journey of self-discovery and of the wounded healer archetype -above all it has humbled me.

You must do what is within you - all roads eventually lead back home - if you decide to start med be patient - it took several months before i really felt much benefit but realized steady improvement for years- and i definitely avoid any agonist.

and you Ladybird? How are you doing and what lies before you now?

Kind regards,
sharilyn

I think I have more problems with the side effects Stalevo, than I have with pd, or whatever I have

I feel like I am addicted to Stalevo..I have to take a certain amount at the same time everyday, or I have problems with movement, as well as a host of other things..I get dyskinesia under 3 conditions..When my first dose is in the process of kicking in..If I forget to take a dose on time, and when they are wearing off for the day..To me, the dyskinesia feels like withdrawal symptoms, and I think that is exactly what it is

I often wonder how I would feel if I got off Stalevo and/or levodopa meds completely?..It would be a long grueling process..When I started Sinemet, it made a difference, but I could have gone without it at the time

I was told when I was dx, that when 80% of the neurotransmitters are gone you begin to develop symptoms..What a crock that is!!..If that was true, I would have been as stiff as a statue along time ago..I can't see how I could lose 50% of my neurotransmitters, and not have a cule that something was amiss?

I have had some symptoms come and go..My first symptom was dragging my right foot..That was about 11 years ago..I stopped dragging that foot around about 9 years ago..My right hand was weak, uncoordinated, clumsy, and curled up like I had a stroke..My right hand is now stronger and more coordinated than my left hand, and it is not curled up anymore..( my symptoms started on my right side )..My voice was weak for a while..Now with the exception of stuttering, my voice is fine

What's up with that?

Wow! Thank you so much moondaughter. You have really given me lot to digest.
I have no time to reply today, but will do in the next day or so. I really appreciate the time you took to explain.
Thank you Steve too. I will reply soon.
Many thanks, Ladybird

wow Steve - maybe you had a stroke and some parkinsonism? or you had a stroke and developed parkinsonism from stalevo?

Sure ladybird,

To clarify actually I went for 15 years before taking any med ( I know I said 11 but i met the neuro at 11....stuff hit the fan at about 14 tho it was building-)- 4 years after my husband had his stroke but i met his neuro at 11 years into pd sx.

I don't think I had a stroke, but Stalevo is a powerful drug, and the side effects can be worse than the disease sometimes