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