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

Hi LindyLanka,

Thank you for this response. You have hit on the main question: What does my gut instinct say?

The simple answer? Well, I guess I don't mind going to jail and not passing "Go" forfeiting my $200. But I would rather see the "Bank error in my favor!"

My gut says go for it. I probably ....

Jim

As made it up says, these do sound like the cardinal signs of PD emerging, and you have had far longer than the normal time allocated for a 'wash out' of levodopa, so I have to say, take care and be careful of yourself, if it is a case of starve rather than crave, things could get worse.

Like all of us, assuming we all do have PD, we have no idea of what we really look like under the medication. I would hate for you to fall or hurt yourself otherwise.

Would also say, I do not know if you are a driver or not, but if you are, this might be a time in which you make a decision not to, to keep your self and others safe.

I would also take a look at the statistics on PD before and after l-dopa.

If you do not have PD these things are not relevant. If you do, they are. But really know one knows. Including at this point, you.

Hi Lindylanka,

You are right;
the doctor is right;
I am right;
Is there a right?

I am not sure but one thing I can tell you is that nobody seems to really know.

Thank you for this response and the consideration it shows. I really do appreciate it. But right now I want to see if there is a possibility that I may not have Parkinson's, not that that's necessarily better than having it. Maybe what I have is worse! Maybe what I have is better. Maybe what I've been through and what I'm going through can help others in some small way. But being only four days away from the test that may answer some questions I have decided to go for it. Again, I appreciate each person is taken the time to respond, including my doctor. But you asked what was in my gut: go for it!

Thursday night I had the last of my medication but had to make a decision: discontinue only the Parkinson medicine or all three. I have chosen all three on the basis that it makes very little sense to me to continue using a muscle relaxant and a painkiller by themselves. And so, Friday morning I had no medication nor will I have until Monday:
==========================================

JAMES E
MRN: (FON) 000
Schedule
8/16 - Stop Benztropine (COGENTIN)
8/19 - start Potassium Iodide (SSKI) 1 gram/mL Oral Soln. Sig: two drops three times a day for a total of 5 days, start two days before nuclear medicine study
8/21 - MOB3 Basement , Check in Radiology. Come well hydrated.
Injection @12pm, continue to hydrate for 3 hours. Use the restroom when needed.
Scan will be @3:30pm.
Thank you

James Lee, CNMT
Nuclear Medicine Supervisor
Kaiser SCPMG
=======================================

I will post daily anything of interest.

Friday, Day One
nothing out of the ordinary, slight tremor in right hand but nothing significant.

Saturday, Day Two
significant change today, tremor in right hand and arm definitely more pronounced with emotion.

That's it for now. Again, experiences, comments and advice are appreciated.

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.

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

First, let us know what you have been taking.

Second, talk to your neuro about this.

Third, if you think think this is PD breaking through, then possibly actually taking sinemet would might sort that out for you, if you had a good response for instance. But you do not want to take it, and I am not at all sure why this is, and forgot to look before I started this post. But again talk to your neuro.

Something you might want to take into consideration is that once upon a time people on PD meds used to be taken into hospital to go on a drugs 'holiday' to give them a rest from what they had been taking. This, reportedly, meant they could restart medication at a much lower dose.

One of the problems of PD meds is you walk a tightrope between symptoms and side-effects. It is my belief that these can be so similar that people wind up taking too much medication and then get the side effects, which are not always huge dyskinesias, but sometimes rigidity etc. If you do decide to take sinemet again, and I am not in any way pushing you towards this options, then you already know about a lot of this, presumably unlike you did originally. Therefore you could possibly control your own intake starting very slowly, backing off, and reducing rather than increasing if you had a recurrence. And also that would mean that by taking less you might be able to come off it if you felt it definitively was not what you want.

I would also say think about these other things - PwP on medication are living considerably longer than they used to, so there must be a reason for that. Exercise is now recognised as being an essential for PwP - are you able to do this better or worse with PD medication?

I do not know how the other medications fit into what you have experienced, others may have ideas on this.

If you post your trio of meds I will try and find something out about how they interact and which ones may be doing what, but all this stuff is taking a potent cocktail, as one of our members says sometimes, we are all white rats.

In the meantime get to your neuro, either by phone, or in person. You have stuck with this diligently, and the fact you are asking for help means you are probably feeling bad enough right now.

OK So I have just also looked up Cogentin, and I do understand what this is doing, partly because it is an anticholinergic, and partly because this group of drugs has been discussed here, over quite some period of time. (I have used one and had positive effect, but it was not a drug specifically for PD). They do have a role in the treatment of PD, and before l-dopa were in fact one of the few helpful classes of medication. It seems likely this is why you are having problems.

You have only a short time before your scan. (Is this a DatScan?)

Another way of doing things would be to stick with what you are doing and take very great care of yourself until after your scan, and talk to your your neuro about what you take afterwards. It looks as though you are going through some kind of withdrawal, as well as a return of PD symptoms.

If you get any really unusual like sweating really heavily, raised temperature, headaches etc. please get medical help quickly, and let them know what you have been doing with your meds.

I want to apologize for the lack of contact in the last several days. I have been enduring some "teachable moments" and have not felt like I could make it through a typing session. But the real apology goes to those of you who are enduring pain and hardship that few can understand, let alone comprehend. My apologies for my ignorance as to how bad Parkinson's can be for those who live with this sucky disease every day, desperately seeking for something that might deliver them from their torment. If that fits the description of your disease then please accept my apology.

You know, a tragic accident occurred in New York a few days ago were a 22-year-old visiting tourists was run down by a taxi driver and end up losing her foot and I believe her leg, unfortunately opposite the foot that was severed. What a tragedy for a young woman with her whole life ahead of her.

Then there was the baseball player visiting from Australia who was gunned down while he was jogging. Another senseless tragedy.

I mean to make no light of these incidents as tragic as they are but I just want to make a simple point. A court can very easily quantify the damages if a claim were filed. Not to be cold but the loss of a foot or the loss of a life have a defined value and will likely be used in the process. Again, it sounds cold but I'm just trying to make a point, what is the value of a Parkinson's diagnosis? Really, think about it. How do you value that life or the loss of the ability to enjoy it? Truly, it is much more difficult to value because no one except the sufferer understands the suffering they endure, and even then can only quantify it against their experiences.

Once I got shot by three guys walking down the road in a foreign country and people would come to me and say I can imagine how you felt. No they couldn't. Every time I came around the corner and saw a guy standing or walking down the road my mind flashed back to that incident and my fears returned. I had to live with that experience for a long time before it started to feel normal again. So no matter how bad the well intending speaker wanted to empathize with my situation, they couldn't. Unless they had lived in that moment. And in these last several days I have lived in a moment far worse than I ever had imagined. This obviously had restricted my understanding of what it means to be in the depths of Parkinson's

And so here I apologize to you who fall under this category and can understand the point I'm trying to make. Here is where my teachable moment began. I'm sorry if it appeared my posts were inappropriate. I simply had no idea how bad it could be and possibly still don't. Anyway, here are the days following:

On the 75th day after quitting sinemet and the 1st day of no medication I began experiencing some minor shaking in my right arm. The 76th day with similar without too much issue. Halfway through the 77th day (third without any medication) things really changed.

The right hand and arm shaking intensified and I began to walk like I was trying to catch up with my body who is trying to get ahead of me. Going backwards was almost certain to take four or five steps to stop my backward progression. A little less strong was my side balance but that was difficult nonetheless. But the most noticeable of these changes was my inability to rise up out of the chair, change positions on the bed i.e. turnover, or have a conversation with my diminishing voice, pull up my pants. And my new friend, the freeze began to take control. I say go he says no-I say move to the right he says not tonight. Another new friend, anger stage front and center, ready at the moment's notice to make me frustrated and mad.

Day 78-- No Sinemet-- fourth day without medication

Day 79-- No Sinemet-- fifth day without medication

Day 80-- No Sinemet--sixth day-- half the day without medication --half the days medication in the afternoon:

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

These last four days were incredibly difficult. I cried several times as I realized my helplessness and lack of ability to solve this problem. I prayed that after the brain scan I would get back to where it used to be, without permanent damage to my brain. I just wanted to go back a week ago. And I want to reiterate: these were the worst days in my 23 years with pk!


Day 80--The Day of the DaTscan http://www.pdf.org/en/science_news/r.../pr_1295578745

I arrived this day at 11 AM. I was set up with intravenous feed through which the radioactive fluid is injected into the body, waiting until 3:30 PM for the actual scan. Among my HMO, Kaiser of Southern California this was the first time the procedure was being utilized. The technician told me that Loma Linda University had one but he was not aware of other Southern California resources available. This was somewhat interesting to me but when I got under the scanner, all tied up and down I couldn't move, the doctors and technicians took over an hour to just set up the alignment of my head to the machine. I nearly went nuts as they plotted on for better than an hour. I am still waiting on the results.

That was Wednesday and I am here on Friday writing this narrative. Again, I began to take the pills I left off of on Wednesday afternoon, some 48 hours ago. My status now 1000% better than it was on Wednesday morning as I was being wheelchair to medical building for the test. I was so miserable. Today I can backup without falling, get up out of a chair, and there is very little freezing. I took a shower and shaved this morning as I felt so much better this morning.

Summary

I still believe that contained within my story is an access road to an easier life. Like the tagline I have seen in this site, I may have Parkinson's but Parkinson's doesn't have me. Honestly, regardless of the results of the scan I truly believe that the answer for me was to kill the Sinemet. I believe that to take the Sinemet when it is not totally necessary is to start down the road that can only get uglier. As the pill does its wonders little by little it constructs a mechanism by where the symptoms of the disease can actually replicate the symptoms of the disease causing the doctor to increase the dosage which in turn strengthens the pill which replicates even more strongly.

I know that will get me in trouble but that's what I believe.

Dr. Dr. Dr. Dr. Dr. Dr. Dr.

Do not neglect your doctor. Do not make changes without discussing it with the doctor or other health professional. Do not attempt to do this on your own. Do not think that this is a recipe for your recovery. In my 5+ days without any medication many times I thought I might die. Discuss in detail with the doctor anything you might be wanting to do.

God bless you all.

Jim