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.

Hi there Dilmar,

Thanks for the reply. The question I have as it relates to your 1st paragraph is was the Sinemet controlling the symptoms before I stopped taking it almost four months ago or is this another bad side effect of the Sinemet withdrawal?

To your second paragraph I will post my 16 year old daughters assessment of my progress or lack thereof.

Thanks,

Jim

After 4 months sans Sinemet here is my advice: DON'T DO IT! At least don't do it without understanding the risk and further without close supervision of your Neuro.

Jim

I thought I would do a quick update as there have been some changes.

Last Monday four days ago I noticed a change in my emotions. I would tear-up for no good reason while watching a news story on TV or listening to the radio while driving. At same time I began noticing my breathing and heart rate, a bit more than in past months. Then yesterday, Thursday my balance was noticeably off and my weakness was replaced by strength off and on throughout the day. My voice also is soft and weak. And my right hand/arm tremor noticeably increased.

I emailed my Doctor who yesterday suggested adding back 1/2 of a 10/100 Sinemet 3 times daily which I declined to do. We did however change my meds as follows:

1) Motrin 800mg 1 in the am
2) Flexeril 10mg 1/2 in am
3) Cogentin 1mg 1 in the am and 1 in the evening

Jim

More changes.

Spoke to Neuro and changed my meds as follows:

1) Motrin 800mg -- TERMINATED
2) Flexeril 10mg -- TERMINATED
3) Cogentin 1mg 1 in the am and 1 in the evening

Yesterday, being my first day without the Motrin and Flexeril, there was a noticeable roughness to my movements. In other words I definitely noticed a difference on the first day without those two. My right hand/arm tremor is noticeably active more than in the past and when I tried to get into my car I didn't seem to navigate my butt into the seat as well as before.

I must say at this point I don't really know if the swap off of no medicine in exchange for the symptoms I currently have would still outweigh the conservative approach of adding back Sinemet.

Within a month my goal (definitely subject to change!) is to terminate the last of the medications.

Jim

P.S. A humorous side note: Thursday night two days ago I got up at 4 AM to use the bathroom. I had a fall into our sunken tub yielding minor injuries to both shins, my head, my nose, my chin and one finger. As I sat on the edge of the tub trying to wake up (yes, I try to continue sleeping as much as possible when I get up to go to the bathroom ) my wife found me in the dark assessing my wounds, which turned out to be minimal, I realized the fall was not Parkinson's related

Day 123 Review

As you may recall about 10 days ago Spoke to Neuro and the following change was made to my meds:

1) Motrin 800mg -- TERMINATED
2) Flexeril 10mg -- TERMINATED
3) Cogentin 1mg 1 in the am and 1 in the evening

Within a few days I was having all kinds of problems: limp and unresponsive muscles making it difficult to turn over in bed, get in the car, rise from a chair, etc., More loss of balance and difficulty walking, increased tremor of my right arm and hand, and generally a loss of fine motor skills requiring help to dress etc.---EDIT: FORGOT TO ADD FREEZING.

I had made this change to the pills thinking that the Flexeril and Motrin were the least likely of the three medications (including the Cogentin) to be giving me positive results on my Parkinson's. But really quickly I could see that, irrespective of the Cogentin, there were major benefits to taking the Motrin and Flexeril.

And so, after seven days without the Motrin and Flexeril, and after speaking to my neurologist, I added back the Motrin, 800 MG 2X morning and night and Flexeril 10 MG, one half tablet morning and night. I did not change the Cogentin.

Now, three days after adding back the Flexeril and Motrin I feel much better. So my meds are as follows:

1) Motrin 800mg One in the a.m. and one in the evening
2) Flexeril 10mg one half in the a.m. and one half in the evening
3) Cogentin 1mg 1 in the am and 1 in the evening

As I have said in the past there are no ups and downs with this regimen. I have stated quite emotionally in the past in this post that I wasn't sure if the swap-off (no Sinemet with certain symptoms versus Sinemet with other certain symptoms) was worth it. I sense that I will continue to vacillate positions as the days come and go. As for now, I will continue this experiment.

The next step will be to decrease and then terminate the Cogentin to discover the extent of the Flexeril and Motrin alone.

Jim

I just wanted to say I am still among the living. A more detailed report will soon follow.

Day 172 No Sinemet

MY MEDS

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

1) Motrin 400mg One in the a.m. and one in the evening
2) Flexeril 10mg one half in the a.m. and one half in the evening
3) Cogentin 1mg 1 in the am and 1 in the evening

As I have said in the past there are no ups and downs with this regimen. I have stated quite emotionally in the past in this post that I wasn't sure if the swap-off (no Sinemet with certain symptoms versus Sinemet with other certain symptoms) was worth it. I sense that I will continue to vacillate positions as the days come and go. As for now, I will continue this experiment.

Current symptoms:

Feet
Swollen
Discolored
achey
Cold
Difficulty Walking

Slight Tremor Right Arm
Weakness, Fatigue
Freezing Of the Feet, Right Foot a Bit More Than the Left
Apathy Apathy Apathy!

There seems to be a lot happening with my feet, Tingley and always cold. I continue to have all kinds of problems: limp and unresponsive muscles making it difficult to turn over in bed, get in the car, rise from a chair, etc., More loss of balance and difficulty walking, increased tremor of my right arm and hand, and generally a loss of fine motor skills requiring help to dress etc.---

BUT THE GOOD NEWS IS I AM STABILIZED, AT LEAST FOR NOW. mY PLAN IS TO CONTINUE.

It has now been over 200 days since I stepped into or, better yet stumbled upon an interesting thing. While taking Sinemet I had a sore back and began taking Motrin (Ibuprofen) and Flexeril. Within a few days I noticed the Sinemet seem to working much better so I decreased and then terminated the Sinemet, with my neuros approval. The result was fairly astounding, very positive, even unbelievable.

If you are new to this post you will find my status at that point as well some historical data at the beginning.

Anyway I have taken my meds at appx 8:00 am and 8:00 pm:

1) Motrin 400mg One in the a.m. and one in the evening
2) Flexeril 10mg one half in the a.m. and one half in the evening
3) Cogentin 1mg 1 in the am and 1 in the evening

Having tried combinations where I decreased 1 med by half and waited to see the results (generally less than a week) and, because of the severity of the change I immediately began retaking that particular med. Having went through most of the combinations and seeing that they each resulted in negative side effect(s), I have come to the point where I'm going to begin adding back. I recently began taking an afternoon dosage of

1) Motrin 400mg One
2) Flexeril 10mg one half
3) Cogentin 1mg one

While it is too early to tell I seem to be finding little things that are positive but, as I said, it's too early to tell. I would however like to tell you some of the interesting things had happened over these 200 plus days.

As I have said in the past there are no ups and downs with this regimen. That is to say I am almost always on while there is only a handful of off, and is occurring when I forget to take my pills.

My Normal Day

I get up in the morning and struggle to get out of bed. I have a difficult time turning over when I enter the bed at night, try to turn over in the night. As I walk to the bathroom my right foot scuffs the floor. I have a bowel movement every 4 to 6 days and have to be careful not to pee myself when I urinate. My usual 15 minute shave, shower and dress is more likely to take an hour as everything from the shower, drying off and getting dressed is done in slow-motion, including struggling to maintain my balance while I struggle with balance issues. I struggle to put on my pants and shirt and generally my wife helps me. I either wear sandals (flip-flops) or one of my kids puts on my shoes and socks. None of this ever occurred until I stopped Sinemet.

I mentioned that my right foot scuffs the floor as I walk. If I'm not trying to pull up my pants or trying to put something in my pockets, and if I make a conscious effort of lifting and throwing my right foot in front of my normal step I can walk somewhat normally. But when the medications as I cut each one began to show negative results, sometimes my body leaned forward faster than my feet could operate, causing me to have to either run or find something to hold onto to stop. Then restarting and repeating the process. I will also add that about the same time this thing happened with my foot, I notice swelling and the feeling that my foot was wrapped tightly in an ace bandage, or maybe had a cast from the toes up my leg to where the sock would normally come. Many times with no shoes and socks on I would have the distinct feeling that in fact my socks were on, causing me to look down at my feet.

Getting to my rocker recliner with my cup of coffee I sat down and watched the news. I then go to my car with my kids and we drive the 15 minutes to the school with little difficulty except for sometimes fastening the seatbelt and manipulating my butt into the seats. When I arrived back home I look in my office where the mail is piling up. I know I should pay the bills and do other administrative work but I don't want to. If I even tried to sit down at the computer the first problem that comes up (forgotten password, etc.) I can't go on so I retire back to my chair to watch the news. I swear my mail is in three files: unopened, opened and needing help and lastly, emergency. If it's in the emergency pile I try to get to it within a month.

One of the worst side effects of the meds or maybe the disease, is the absolute inability to motivate myself to do things. When I force myself to do the mail it takes all of an hour to do it and I feel great when it's done. I still can't bring myself to do it.

Through the day I hang out in the Jacuzzi with my two-year-old daughter and wife. The rest of the times watching news until 3 o'clock when I go to get the kids. Helping with homework, watching TV and going back to the Jacuzzi fills out the evening.

Current symptoms along with the above:

Feet
Swollen
Discolored
achey
Cold
Difficulty Walking

Slight Tremor Right Arm
Weakness, Fatigue
Freezing Of the Feet, Right Foot a Bit More Than the Left
Apathy Apathy Apathy!

Well, that's it for now. Believe it or not I tried to quit writing this to three times but I forced myself to go on. But then that's life!

I would welcome any comments or reports of similar symptoms.

Jim