I DON"T KNOW! Can you help? I find myself at a point of no return in a program I ignorantly signed up for led by an incompetent technician (me). Assuming I make it to the test Wednesday, I need to make some decisions. Please give me your opinion:

1) Assuming one, two or a combination of the three medicines I was taking until Friday last week were producing the beneficial results I had been experiencing, would you suggest I reinstate all three in the same proportion, two of the three or some other combination?

2) Should I go back to the same levels I stopped at?

3) Is There some indicator that should tell me to reinstate the Sinemet? The way I feel now I have accomplished something by getting rid of the sentiment.......


Thanks

Jim,
Sounds like the cardinal symptoms of P.D.
Perhaps recommence some Sinemet and see if there's an improvement?
Start with one tab perhaps and see if the improvement is immediate and obvious.
Your freezing and falling episodes need to be addressed ASAP before something worse eg a fractured hip occurs.

Hi Made it up,

Thank you for the input. And you are right on with your advice. My dilemma is that for the last two plus months I have been monitoring closely my body's reaction to starvation of Sinemet so I could see the cost measured by the benefits. To that end I have suffered for maybe 4 or 5 days through difficult times, to see the difficulties were largely temporary and dissipated the next day.

The change comes when I was told yesterday (Wednesday) that I needed to stop my Cogentin tomorrow in preparation for the brain scan, which will somewhat negate my 70 days of "research".

I suppose I could delay the brain scan but I am really interested in seeing the results.

Jim

Sat Night--tough to get in bed, turn over, get up.

Sunday--Morning normal. Afternoon tough. Almost violent tremor in right hand/arm at times. Balance, mainly when moving backwards is becoming an issue. Walking more difficult. Night is very difficult moving.

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.

...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

A quick update.

112 days with no artificial L-Dopa. How am I? Well...

I continue taking the following at appx 8:00 am and 8:00 pm:

1) Motrin 400mg 2 times daily
2) Flexeril 10mg 1/2 in am, 1/2 at night
3) Cogentin 1mg 1 in the am and 2 in the evening
4) Steroid-5 day plan, Prednisone 5 mg tablets*

Benefits have been discussed in numerous threads in this post, two of which are No On or Off period and taking pills only 2 times daily.

Difficulties include rising from a seated position, turning over in bed, getting in and out of the car, minor freezing episodes, getting dressed, minor endurance issues, slight loss of memory, moderate cognitive loss, and softness of voice. Strange thing: I never had any of these symptoms until I stopped the L-Dopa.

Also, apathy, constipation, difficulty with hygiene tasks, sporadic weakness; all of these I had experienced prior to June 2013.

I am pleased that in almost each of the above I am steadily getting better, slowly but surely.

Jim

*The addition of the steroid came at the beginning of another struggle with the pain in my back, started 9/19 and ends 9/23.

Hi
Thankyou for your updates. There is lots of interesting information coming from your experience. This time i see that in addition to the motor symptoms you are now noticing the non motor symptoms including pain that sinemet apparently controlled well for as you say you had not been aware of them before.

I have a question for you. Your writing is based on your own perception of how you are doing. Have you considered incorporating the observations of a family member or other observer to add to your self report. It could give you valuable feedback on how others are viewing your progress.