The results of the DaTscan as per my Neuro are as follows:
To:
James
From:
Dr.LEE
Received:
8/26/2013 11:05 AM PDT

Hi Mr. G,

Thanks for emailing me. I got the results of the DaT scan. It does show evidence for Parkinson Disease on the scan.

Dr. Lee
==================

I have asked for more info as to what % sure does this evidence provide (70% etc). I am not sure where to go from here. Overall I am slowly getting back to “normal”.

Jim

It's been 90 days now since I stopped taking Sinemet-COLD TURKEY. I am still around although not without some difficult moments. My meds are taken only 8 in the morning and 8 in the evening. NO ON AND OFF!

1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1/2 in am, 1/2 at night
3) Cogentin 1mg 2 times daily

Jim

Greetings:

I am feeling a little deserted since my conversation with my Neuro last week wherein he basically answered my direct questions although he didn't advise or warn me or caution about my 99 days without Sinemet. My meds are

1) Motrin 400mg 2 times daily (Just reduced 9/5)
2) Flexeril 10mg 1/2 in am, 1/2 at night
3) Cogentin 1mg 2 times daily

It appears to be certain that I have PD. What seems to have happened is that I have flushed most of the altering drugs from my system to expose the symptoms of my PD without the symptoms of the meds? Anyone agree?

Here are the positives:

Absolutely no tight muscles
No problem driving
Meds taken at 8 am and 8 pm
No ON/OFF time
No problem eating
No problem sleeping excepting turning over, which is getting better
70% of the time no shaking of the hand/foot
No sweating
No drymouth or difficulty swallowing


Here are the negatives:

Difficulty with balance
Weakness
Difficulty dressing
Difficulty Getting out of chair
Drowsiness
Slight memory loss
Possibly minor vision issues
Noticeable slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy

MY QUESTIONS ARE:

1) As nearly as can be determined I have PD. Sinemet and all of it's helpers are no longer taken and indeed, are gone from my system (excepting Cogentin).

A. Why am I doing relatively well without Levidopa?

B. Which Med should be cut next and by how much?

C. When to cut next?

Jim

Jim
I have read your journey with interest though no intention of trying it myself

It leaves me wondering about your hopes and plans for yourself and do you think with time you will improve as it seems that you are still not entirely convinced you have Parkinsons, or do I have that wrong.

As to your questions I cannot answer them, perhaps those you live with have an opinion. It would be interesting to know what they think.

Hi dilmar,

Thanks for responding. Let me respond to your questions.

I believe I have Parkinson's. As I studied the disease I found cause to wonder if I may have been misdiagnosed. I had the DaTscan to try to reaffirm that it indeed was Parkinson's and to remove the doubters reasoning as to the "remarkable" journey I find myself on (My Neurologist said it was remarkable on 7/11, OVER 2 MONTHS AGO).

I believe with all my heart that the meds, which in the beginning help a lot to resolve the relatively minor symptoms, bring far greater problems as time passes. Symptoms that doctors deal with by advising more meds, which bring more problems...and those problems are blamed on the disease instead of meds. I believe my experience has validated that.

Look at my situation today. I no longer need to take Sinemet 10/100 1/4 tablet every half hour. Presently it's other meds (no Sinemet) morning and night. I no longer have "on and off" periods. I do for the first time have freezing to deal with. I no longer have to sit on my hand, or hold on to my armrest to control the shaking while I drive. But now I struggle a bit getting in and out of my car. I can go out to eat and order anything without asking for help cutting meat- etc., etc.

I hope that helps. I will end this by saying how much better is my life now than it was 4 months. WHEN I ACCIDENTALLY STUMBLED INTO THIS EXPERIMENT!!!!

Jim

3 years ago on my diagnosis my specialist prescribed Sinemet. Almost immediately, I suffered from a certain amount of dyskinesia as well as nausea. Finding that I disliked the side effects, I work with my doctor to decrease my dosage to zero. this took time, a year and a half to be precise, but I thought it was worth it. One of the alternative treatment methodologies I have used has been high cadence stationary bike riding. I cannot overemphasize the importance of working with your doctor on your therapy program, and the importance of incorporating physical exercise in it.

rempatterson....I agree,one of the most valuable thing is activity. I would not be functioning very well at this point without my low dose of natural l-dopa from fava and have had no side effects after almost 4 years on it. I also highly recommend fermented papaya. If we keep our bodies healthy thru good exercise / good foods/ sunshine/ healthy relationships and enjoyable activities to look forward to....the disease seems to be able to be controlled instead of controlling us. I am doing well, except for pain right now from braking a rib in a fall while "clowning" last Saturday at an event. They said it was a great fall....I said not really, wasn't planned. But, as all things..This to shall pass! I had fun.

Where can I find this Fava bean extract?

...That I can just stop taking my carb/leventa 150s after taking PK meds 15 years just like that!! with no ill effect?
I do not believe it!

Hey buzz,

Thank you for the query. That you could? No, I don’t believe that I’m trying to say that. That I, some 12 years after taking Sinemet for each of those years-THAT I-stopped cold turkey almost 4 months ago. That you could? I would truly have no idea.

With no ill effect? Not hardly. Difficulty turning over in bed, getting in and out of the car, loss of cognitive mental skills, freezing episodes, loss of some memory-these are just some of the negatives coming out of this experiment, if you will.

These last four months have been a real trade-off but at this point I find myself in a position to continue the trek through withdrawal-that is truly what it is-in the hopes of discovering something that might help me and you as well. But make no mistake. There definitely has been and will continue to be “Ill effects”.

Stay tuned for further updates if they interest you. And thank you for writing your response.

Jim