YOU DON’T HAVE PARKINSON’S!!!

“A toast! to our good health.”

My Primary Care Doctor burst through the door and with as much emphasis as he could muster declared, “You Don’t Have Parkinson’s!!” If I had a very quick mind, I would have said something like, “I’m so glad you cleared that up because the Neurologist, YOU REFERRED ME TO, thinks I do. And the Urologist, YOU SENT ME TO, prescribed medication for a problem I have wetting my pants because of Parkinson’s!!”

If he had asked, “what makes you think you have Parkinson’s?” I would have told him about how the Neurologist and Urologist agreement, and how the medication was helping with my urgency problem.

 Of course, he could be right, maybe I don’t have Parkinson’s. The Neurologist I went to for a second opinion agreed with my PCD and disagreed with the first Neurologist’s opinion. The second Neurologist seemed to think that my mistake was in studying what symptoms Parkinson’s Disease caused and then allowing my imagination to convince me that I had those symptoms. That’s probably why they say, “A little education is a dangerous thing.” Don’t get me wrong, I have great respect for anyone who is intelligent enough to become a Medical Doctor. But I also like to study any condition that they say I might have.

When the Neurologist diagnosed Harriet with Alzheimer’s I bought every book I could find and went on websites to learn all I could about this horrible disease. I did this not because I thought the Neurologist was wrong, or to find some miracle cure the AMA was hiding, but to find out as much as I could about how to be the very best caregiver I could be. I also wanted to find out about symptoms, and stages, to prepare myself for what might be coming down the road. The studies I did were a great help for me personally because of several problems dementia caused with our relationship.

So, when the first Neurologist diagnosed me with Parkinson’s I went on every reputable website I could find, bought books and watched videos. I started doing exercises for people with Parkinson’s because everyone kept saying that I could stop the symptoms I already had with exercise. By the time I saw the second Neurologist, four months after the first one, my condition had improved some and I knew what the Neurologist was going to look for in the examination. I think  I subconsciously wanted to show the second Neurologist that I was healthy and Parkinson’s free.

Let me give you a quick overview of the time I had with the Neurologist for the second opinion.

We went through the usual formalities of introducing ourselves and I went on to tell him about the first examination and the diagnosis of Parkinson’s disease. I told him what books I had read and videos I had watched to figure out what I could do to help myself.

The Neurologist asked what symptoms I had that made me believe that I had Parkinson’s Disease. I answered,” when I speak people can’t hear me.”  He said, “I’m sorry, you’re speaking so softly I cannot understand you.”  “Neither can anyone else,” I said. 

“If you asked me to write down my answers, you would see that while I might start writing large enough soon my writing becomes extremely tiny and illegible.”                    

“Loss of Smell is a very common problem with people who have Parkinson’s.” the Neurologist said.  “Can you remember when you lost your sense of smell?”

“As I recall,” I said, “it happened while we were living in Canton, Michigan. Do you remember the January of 1997 or 98 when I had double pneumonia?’ I asked Harriet. ” There was so much coughing and sneezing! I’m sure that my sense of smell was blown right into a Kleenex or handkerchief. By the time I realized it was gone, there was nothing that could be done. I mean, all the handkerchiefs were washed, and the Kleenex were in the landfill. I have to admit Doc that I felt pretty stupid letting something that important get thrown out in the trash without even looking for it. You know what I mean?”

“I can only imagine.” He said.”

“It was around that same winter that I began having sexual problems.” I told him. “First it was PE and then ED and following that I stopped having orgasms. Well, that’s not totally true, they just are so different. It’s like when you’re about to sneeze and you go, AH…ah…ah, but before the CHOO comes out the sneeze goes away. That’s the way an orgasm is for me.”

“I’m sorry, I’m not following you.”

“Believe me, Doc, that’s a good thing.  If everyone followed my example of sexual dysfunction there would be a lot more depression. It was the year after that when I started taking Prozac and I’ve been fighting depression ever since.”

I’ll tell you something that adds to my depression is a lack of romance. Not only did my poor wife have to deal with my sexual dysfunction but she also had to contend with all the extra saliva I produce. I was either drooling in the soup or right in her face. Nothing destroys the moment like a bunch of spit in your face when you’re expecting kisses.

“In fact, “I continued, “I wasn’t thinking about Parkinson’s at all. I really thought my problems were   caused by a worsening depression. I’m tired all the time, have trouble sleeping, and I never get anything done.”

“I thought my lack of sleep was the reason I was falling down so often. When I planted the garden, last spring, I fell five times in one day. I’m so tired I don’t pick up my feet and wind-up tripping over things.”

“Finally, Doc, I used to do everything Fast; I walked fast, drove fast, ate fast, and talked fast. If I was moving, it was fast. Not anymore. I thought I was getting old and old people slow down. It used to be that I would be out of the car and in the house before Harriet had her seat belt unfastened. Not anymore. Lately she’s at the front door of the house waiting for me before I even get my car door open. Do you know, the other day I took a driving test and I now brake like someone who is 85 years old?”    

He looked at me like he was uncertain what to say. “Well, it sounds like you have a textbook example of Parkinson’s Disease.” he said.

He then did several tests to look for Tremors, Rigidity, Akinesia, and Postural instability. Without three of the four you cannot have Parkinson’s Disease.

The second neurologist ruled out Parkinson’s for the following reasons:

1. No tremor. Although at least 30% of people with Parkinson’s will never have a tremor at rest. Many people will rule out the possibility of Parkinson’s Disease when they do not find any sign of tremor.
2. No sign of ratcheting.  That is, he didn’t see, or feel, any jerking movements when I lifted my arm up.
3. Minimal postural instability.

His diagnosis was Parkinsonism’s. That is, I have many symptoms of Parkinson’s Disease but not the disease itself. At first, I was delighted with the news that I had Parkinsonism’s. (We call them Saylorism’s because my mom’s side of the family has a lot of these symptoms.) My joy was turned to concern when, upon further study, I realized that the prognosis for people with parkinsonism’s is much worse than those who have full blown Parkinson’s. This is also true for people who have Parkinson’s with no tremor. Parkinson’s with tremor is an extremely slow developmental disease. Parkinsonisms is much quicker to progress, as is Parkinson’s with tremors. Either way this goes, it appears that I will die sooner rather than later.

I am having a Dat Scan next week and a follow up visit with the Neurologist next month.

Please continue to pray for us and we will be praying for you.