The Book

Pamela’s book, Did You Kiss Me Goodnight, is the evolving story of her life and how it has been affected by Parkinson’s. She would like you to know that it is definitely a project that is under construction. We’ll keep you posted on it’s official release date.

The Book

I write this book to encourage other people with Parkinson’s, or any life changing challenges for that matter, to take part in controlling their own destiny.

Acquire knowledge everyday and use it to make your circumstances the best they can be. Draw from your past experiences and accept inspiration from those around you. Don’t just “change the things you can and accept the things you can’t” without first learning if there are in fact things that “can’t” be changed.

Live and breathe the test you have been presented. Your journey will certainly be enhanced.

-Pamela James

Text Box: “THE DIAGNOSIS” Jim says he shares his protective umbrella with me to keep us both safe. For about a year I referred to that fateful day when I was diagnosed (September 9, 2003 at 9:29 in the morning) as the day the umbrella was down. I now know that the umbrella was in fact up and stronger than ever. I just have “Parkinson’s disease” not some sort of atypical Parkinson’s that’s virtually untreatable or heaven forbid some other killer disease. Parkinson’s is something that you live with, not die from. I am truly blessed. One of the hardest things I have ever had to do was to tell those that I love that I have Parkinson’s. Jim held me tight while I cried; to this day I feel his arms tight around me even when I’m alone and that relentless curtain of depression tries to come down on me. I had to tell my mom and dad on the phone; their voices appear in my head often, my mother’s reassurance that a cure will be found and my father’s words that this is a test that he knows I will pass. And I also had to tell my daughter, CarlaRae, on the phone. Probably the hardest conversation I have ever had to have with her ended with me finally realizing that my then twenty two year old child had become a compassionate and extremely wise adult. My first sign of Parkinson’s came about 5 years before my diagnosis. I picked up a fountain drink at a restaurant and my hand was trembling. It alarmed me enough that I made an appointment to see my doctor. A good friend and then co-worker, recalls the day that I mentioned to her that my worst fear was Parkinson’s. We both laughed at my hypochondriac reaction to what must have a simple explanation. I went to the doctor and told him of the shaking hand. He asked if this had ever happened before and if it had occurred since. After I answered with a profound no, he had me walk from one side of the examining room to the other. “You don’t have Parkinson’s disease! People with Parkinson’s shuffle their feet.” This put my mind at ease. As I look back, it was about that same time that my physical abilities began to slowly decline. I often refer to it as becoming a “wimp”. I can be somewhat of a scaredy cat by nature, but this was getting ridiculous. I would find reason after reason why not to do some of the things that had come so easy in the past, such as scuba diving. The weather was too cold, the waves too high, I hadn’t slept and was too tired. The year leading to my diagnosis, we traveled to the southeast corner of the United States in our RV. We saw New Orleans, Alabama, and Florida. That trip, in January and February was the first time that I noticed a “nervous tremor” in my right leg. It would happen when Jim and I were playing cribbage at the table in the RV or when I was sitting on the toilet. I can’t say that I thought too much about it. I just assumed it was nerves – after all, Jim and I do play cribbage after just about every meal to see who has to do the dishes! In the spring, I sought advice from a nurse. I am insured by Kaiser Permanente and they have a tremendous system that allows their patients to have access to doctors and nurses over the Internet. This is what I wrote; “Over the past several months I have noticed a tremor in
my right leg. It has been gradually getting worse. It always occurs
when sitting with my heals up off the ground (weight of my leg on my
toes). I notice it sometimes when my right leg is crossed over my
left. Today I noticed it while working out at the gym. It has come on
so gradually that I didn't even mention it when I was in to see my doctor in March. But now, it occurs frequently throughout each day. I
can stop the tremor by concentrating on the movement (hard) or my
changing the position of my leg. Should I see the doctor?” Here’s the hard thing to admit. The nurse basically said that it could be nothing at all, but that it could be something. She said she would forward my message to my doctor for review. She told me that he would probably want me to make an appointment. Well, I never got a call from the doctor (probably an oversight or and administrative problem), and I didn’t follow-up. I think that the symptoms seemed to quiet down a bit, or was this my imagination. At the time of my eventual diagnosis, I thought of all the times that I was shocked when someone I knew didn’t get a potential health problem looked at immediately. Suddenly, I was one of those people. Later, I would find out that at the time I was diagnosed it didn’t really matter how early a person received a diagnosis. Today, however, a little more is known about how effective exercise is on the progression of Parkinson’s. Therefore, the sooner a person with Parkinson’s is diagnosed the sooner they can begin a regimen to help slow the progression. That summer, we traveled to Canada with good friends. Somewhere between Jasper and Lake Louise, I started to notice a tremor in my right a hand. I never vocalized it, but inside Parkinson’s was my biggest fear. When we returned from Canada, I made an appointment with my Primary Care Physician. This was not the same doctor that discounted my symptoms so quickly five years before. He examined me and asked a lot of questions. He told me it could be nerves, or it could be something more serious. He referred me to a Neurologist. My doctor (a very compassionate man whom I trusted and liked) retired from his practice a few years later, ironically, with Parkinson’s. Parkinson’s cannot be simply diagnosed. There is no blood test to determine its existence. Basically, doctors rule out other causes of the symptoms and do movement tests, similar to those given to suspected drunk drivers, to make the diagnosis. This I read on the Internet, but I didn’t share my fears with anyone – after all, nothing really bad could ever happen to us! My appointment with the Neurologist was on the morning of September 9th. That month, our good friends Ron and Tracey were living with us. Ron was in the middle of treatment for cancer and therapy following a stroke that had occurred during his treatment. I couldn’t burden my friends with my concerns for my own health; besides, nothing really bad could ever happen to us! Sometime on the evening of September 8th, Jim doubled over with abdominal pain. By midnight, we were in the emergency room – his diagnosis, a kidney stone. The treatment – morphine until the pain subsided enough for me to take him home at 4:30 on the morning of September 9th. After a couple of hours of restless sleep, I got up and drove myself to the Neurologist’s office. Yes, by myself. But after all, nothing really bad could ever happen to us! I think it was about when I got in my car that morning that I decided that I had Parkinson’s. Something bad was about to happen to us. The Neurology department seemed not unlike most of the other doctor offices at Kaiser. The waiting room had upbeat wellness posters on the wall. The receptionist was nice to me. I wonder if she knew that something bad was about to happen to me. I had that feeling that the world had stopped and was holding its collective breath. I smiled at myself. What a hypochondriac, I thought! I intently followed the doctor’s requests as she put me through a number of movement tests. I was shocked to discover that I didn’t swing my right arm when I was walking. My right hand had almost no dexterity. I couldn’t touch each finger to my thumb, one after the other, as I could with my left hand. I am right handed. She asked about my handwriting – what did that matter! Yes, it had gotten small and hard to read over the past few months. My new doctor, who had now known me for a total of 29 minutes, looked directly at me and said “You have Parkinson’s Disease”. I waited, as if there was going to be a “but”. It never came. I waited… I didn’t cry. I couldn’t think of what to say. I finally managed “What now? What happens to me? Will I die from this?” The doctor handed me a brochure. It was probably my imagination, but I felt that she needed to get to her next patient. She told me that Parkinson’s is something that you live with. Most patients end up dying from something else. I remember her saying it is progressive and there is no cure, but that there are medications that I can take that will help with the symptoms. She told me that I would take medication for the rest of my life. She told me to go home and read about Parkinson’s; to absorb what was happening to me and that I would need to make some decisions as to what kinds of medications I wanted to take. Wasn’t she the doctor! Shouldn’t she tell me what to do? Who does she think she is? Oh my God, I will have to take medicine for the rest of my life! I thought of Michael J. Fox. Poor Jim. He was dealing with a morphine hangover and fear that the horrible kidney stone pain would come back and I come home and tell him that our world as we know it is about to change FOREVER. I cried as he held me. I remember being focused on the fact that I would need to take medicine every day for the rest of my life. Now, I smile at that recollection. Everyday I take medicine; grateful that I will get to take it for the rest of my life! We read the brochure. I don’t remember what it said. I had this overwhelming feeling that those around me needed to know what was happening to us. It was time for friends and family. We needed support and we found it in an outpouring of love and concern.

Here is a sneak-peek at the first chapter…