Jim, how wonderful for you! Hoooorahhhhh!

My long detailed replied just went down when my internet crashed, so here is the short/sweet:

It does take courage and a nuanced eye to interpret a need for less drug, when we're told repeatedly that as carba/dopa effectiveness becomes unreliable it's because we are impaired, we cannot receive its benefits. It is easy to think you need more when it's not working well. And easy to think that calls for piling on another drug to up effectiveness.

A little over three weeks ago, we got the hunch that Jan needed less because she was cognitively and physically more herself when in an off period. That proved right. Now we're working on when and how frequently to dose. It seems that she does better by starting as late in the day as possible, or did for a while. For a week, until she was bitten by a spider, that was noon. Today, 9 AM worked well.

There are so many layers and cross-currents that are not PD but contribute to it. Sounds like you are dealing with the nexus of stress/pain/inflammation very effectively.

Very best wishes, and keep us informed as you go!
Trisha

P.S. Soccertese, not everyone needs the same dosage of Neurogenic Extracts as did Jan, so I can't represent the costs fairly. She's at the point where insurance is going to have to cover most of what she does, and is making hard choices accordingly. Her money now is going to Neuro-Modulation Therapy, a treatment modality of Dr. Leslie Feinberg. This is working just great for her.

YOU brought up the cost, i think it's fair to ask.

Probably not the correct procedure!
July 2013. I am a resident of Canada living alone in Edmonton, Alberta, age 74. I was diagnosed with PD in 2001 and have mild familial ET since my teens. My Neuro sent me to see a specialist in Vancouver in 2010 as he was confused about my diagnosis mainly because Sinemet had no effect. He confirmed the diagnosis as tremor intensive PD and said I would need to start on Sinemet at some point. Started on Prolopa eighteen months ago, now on Sinemet (150mg x 3/day) which only during the past several months causes severe pounding tremor in my right arm one to two hours after ingestion, causing continual freezing making it very difficult to stand up from sitting position, change direction, dress myself. exercise, etc and lasts for seven or eight hours. I can go without the med for a day with a big improvement but any longer I start to weaken. In the past several months I have gone from self-reliance to dependence. I am striving to find a balance by cutting back to 1 x 50 mg twice daily. Sinemet is definitely no longer helping my condition. Any suggestions?

Happy 4th of July!

My story as of June 1, 2013 is this: I was taking SInemet/Carb/Lev 10/100 6 to 7 pills daily. I had tried several variations of this like adding Comtan, changing to Stalevo, etc. with little change. I had my annual appointment in late May with my Neuro and we decided to change from Artane to Cogentin. I had fully stopped the Artane without a substitute earlier in the year to try to identify why my symptoms were so pronounced compared to just a few years ago. My body wanted no part of quitting the Artane and I ended up taking it again in late March 2013.

I should state at this point my symptoms in order of importance:

1) Muscle tightness-this resulted in difficulty walking, eating, working; almost everything! I was reaching the point of going for DBS, for which I was approved for already. I literally did not want to leave the house for fear of what rebellion my body might present, or have a period of "OFF" time.
2) Apathy-I used to run several businesses I started without difficulty. Now I can't even open my mail. I have months of unopened mail in different piles of priority just waiting for my attention.
3) Unintended leg and arm movements-if I am watching a fight on TV I unconsciously "act out" what I see on TV. IF that's not bad enough my other arm and leg join in the fun. I end up sitting on my hand to stop it!
4) Morning Prep-Shaving and showering and towel dry are very difficult if I don't go immediately when I turn "ON".
5) Left side of body vs right side of body-My right side needs more help than my left side but once I turn "ON", one has too much and the other too little.

I went to my Neuro in May and he gave me my prescription for Cogentin so I stopped the Artane one day and started the Cogentin the next day.

Around this same time I woke up with a sore (very sore) back. I went to my Chiropractor but he was no help. So I started taking my historical mainstay of Flexerill and Motrin. I went to my family doctor and was given a steroid pill, identified earlier in this post.

It is now the 1st few days of June. I am taking the meds identified above when I notice I forgot my half hour SInemet/Carb/Lev dosage. But I also notice I feel...good! So it occurred to me to skip several pills, which I did. I was up the next morning and I felt great! Thus began a major shift in my meds: NO SInemet/Carb/Lev. I checked in with my Neuro and here we are some 30 days later! With no SInemet/Carb/Lev!

Here are the positives:

Absolutely no tight muscles
No problem driving
No ON/OFF time
No problem eating
No problem sleeping
95% of the time I walk normal type normal
90% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight memory loss (I don't forget facts, I just forget why I came to the kitchen
Possibly minor vision issues

So then, these are the facts. The last SInemet/Carb/Lev I took was on June 3, 2013. I FEEL GREAT! Every day I wonder if this will be the last day of freedom. I wonder if the relief is short-lived. But in my first days I was so happy to be liberated from muscle tightness, had it of ended there I would have been so thankful.

Anyway, here it is. Do with it as you will. But if it's as simple as adding Ibuprofen and Flexerill....

Consult your doctor. Always.

Jim

DAY 33 - NO SINEMET

It has been 33 days since stopping the Sinemet/Carb-Lev. I forgot yesterday to list dry mouth as a negative to the pills. But again, overall I feel great!

As an example, I bought a car several months ago. My right foot was doing things on its own. I wanted to accelerate but my foot would go fast then slow then fast. It was terribly annoying and embarrassing. In addition all that fidgeting eventually knocks the rubber cover off the break pedal. So I drive my new car with the rubber off.

Another driving example is my right arm. If I am too much "on", I have strength to drive but too much in my right arm. So I grip the steering wheel too hard until I can't grip it any longer, then I switch and try to put my hand under my thy or gripping the arm rest or my other arm. When I am "off" I can barely turn the power steering wheel!

Both of these symptoms disappeared on June 3 as I wrote to my Neuro:

The only returning symptoms from before June 3, 2013 is a very slight tremor In my right hand which exacerbates when I am nervous, and slight issue with walking normal. That is to say sometimes I have to think about how to walk.

That's all until tomorrow!

Jim

==========================================

DAY 34 - NO SINEMET

It's my 34th day without Sinemet with little notable change from yesterday. I've been thinking about writing about my day yesterday to give an indication of my before and after quitting SINEMET.

I got up at 8:30 am after retiring at 11:00 pm the night before (I have never had a problem sleeping). I had some cereal and coffee (I used to only take coffee as any food ingested would interfere with my pills). I worked a little on the computer (I can now type with both hands freely whereas before I used mostly my left hand) then I went to get showered (I used to have to wait to come "ON" then rush to do my shower/shave so I didn't get caught by my "OFF" (for the last 34 days I have not had "OFF" and "ON" times- I simply take my pills at 8 am and again at 8 pm, no matter what I eat. By the way, I have gained in excess of 12 lbs in these last 34 days mainly due to the fact food is no longer an enemy. AGAIN, I DO NOT HAVE "OFF" AND "ON" TIMES. HONEST.

My son arrives and we talk for a few minutes (here the hand shaking is at it's most pronounced in 34 days) and he leaves my grandchildren with us so he and his wife can go to Vegas for the UFC fight.

I then drive for over an hour to the Casino, and I park and walk (walking normally, not the rock in the shoe with toe curling walk). I play for an hour and go get my free buffet (again, no fears of what I eat and when will my accelerated "OFF" come, then I return home). I watch a little TV then drive to a restaurant for food for the munchkins and retire to my Jacuzzi with my wife and 2 yr old baby girl (she is so cute!).

That is followed by playing with the kids and going to bed.

Finally, I feel like my body needs some adjustment to the regained abilities (After all, I didn't deteriorate to my PK state in 34 days-it's taken over 8,000 days!). I think that as I have abused by overworking the left side of my body these 20 years to compensate for my right side disabilities I must exercise again to adjust. Anyway, it feels so good just to be able to drive and walk normally! And eat.

I hope this helps someone. I think we could use someone analytical who can look at the pills and maybe find volunteers to try the different combinations, with Doctor approval of course. Please remember, with me it took just two days to know something wonderful had happened-and the benefits have far, far, FAR outweighed the cost.

Jim

I was having severe back spasms as a result of my DBS programming and was prescribed Flexeril and Ibuprofin and I feel much better. My gait is getting better too. I'm still taking levo/carb, but only 200 mg a day.

Hi Jim and soccertese

I am not joining this conversation to take a side, but I just want to make certain that what we post in these forums is done so with a sincere attitude of wanting to help someone struggling with Parkinson disease.

This has been repeated so many times that its sickening, but I will say it one more time - EVERYONE IS DIFFERENT as relates to PD symptoms. The only consistency I have found is this:

• People dx with PD have 2-3 of the cardinal symptoms of PD over a period of several weeks that cannot be attributable to anything else (those 4 cardinal symptoms are: resting tremor, Extreme rigidity, bradykinesia (extreme slowness), and postural difficulty (balance)
  
• No matter what side effects you may experience, dopamine replacement therapy gives some kind of relief of these symptoms
  
• Not everyone experiences side effects due to PD meds significant enough to affect quality of life (QOL)
  
• . Don't ever suggest that a specific therapy answers all problems. It doesn't, hasn't ever, and never will!

This forum is to provide support. It is "owned" by its users. Some of us have been posting here and migrated from BrainTalk over a decade ago. We tend to become defensive if it remotely appears that the forum members are being taken advantage of (especially with salespeople trying to push their product)

We are a team once our sincerity is established. By nature we will attack (sometimes even viciously) if we spot anyone appearing to prey upon our condition for the express purpose of profit.

Good luck on coming to consensus. And if you are a fake, I strongly advise you to pack up your bags (and product) and RUN! LOL
Peg

PS - arguing usually accomplishes nothing, and may run some needy people away. How about a BIG virtual hug?

i respect your opinions/input as always.
but no hugs.

I_Got_it_2,

Thank you for posting about your experiences and please keep us informed about your progress.

If I had gone over 30 days without levodopa and was still moving well, I'd be posting the same as you.

You've never claimed to have found a cure for everyone with PD, but rather reported something that having helped you may help others.

Could you give more evidence in your posts? Of course you could, but so too could everyone on this forum, me included.

I think the most likely way to explain your results is that you were misdiagnosed with PD. That doesn't take away any of the importance of the event to you - you could have spent years needlessly on levodopa.

Well done!

John