The diagnosis that changed my life

4 Dec

Part of my brain does not play well with others.

A section has decided to jack up some its special nerve cells so they do a lousy job sending signals to the part of my brain that controls movement. The movement section of the brain doesn’t know how to handle it, and it’s acting out by messing with my coordination and causing tremors and muscle jerks on the right side of my body.

My first neurologist believed I have the early stages of Parkinson’s disease. A second neurologist wasn’t ready to call it Parkinson’s, but she couldn’t rule it out either. She wanted me to try medication to control the tremors.  A third neurology specialist reviewed my MRIs after a lesion was found in the white matter of my right temporal lobe. He’s confident the thing is benign and isn’t causing my symptoms. (The right side of the brain controls the left side of the body. My movement issues impact my right side.) His approach is “let’s rescan your brain in six months to see if this thing changes.”  I’m good with that; I would like to keep all my brain cells and I really don’t need a hole in my head at this point in my life.

I thought I was perpetually stressed out

My symptoms began about eight years ago with a slight tremor in my right hand. Friends and family members noticed it, but I brushed it off as preschooler-induced stress. I was jacked up on perpetual adrenaline because my 2-year-old son liked being a death-defying stuntman.

The tremor continued for several years, and I continued to blame stress even though life was relatively peaceful. My son grew out of his crash test dummy phase, my daughter thrived at school, my husband had a great job, my career was going well, and the dogs were well-behaved roughly 70 percent of the time.  However, circumstances changed earlier this year.  I took a job in a very tense environment, and my tremor went into overdrive. I did my best to hide my shaking hand, but the tremor looked like I was mainlining pure espresso. A doctor prescribed anti-anxiety medicine, and while the drug made it easier to handle the work drama, it did nothing to ease the shaking. Muscle jerks were soon added to my repertoire of involuntary movements.

I finally gave in and went to see the first neurologist, a woman who specializes in movement disorders.  She conducted a variety of  tests and brain scans and eventually told me she suspected I had the early stages of Parkinson’s. There is no neurological reaction or medical test that definitively identifies Parkinson’s, but I do have several of the classic symptoms: my hand tremor never stops; I no longer swung my right arm when I walk; my coordination is a little off; and frat boys on Bourbon Street have better balance than I do.

My reaction: Control freak and hot mess at the same time

I wish I could say I had a very mature and reasonable reaction to the initial diagnosis, but I did not. I lost it in the hospital parking lot by crying, yelling and vomiting on a fellow patient’s tires.

I drove home and said nothing for the rest of the day; however, my mind raced with thoughts about how this was going to impact my family’s future. I eventually told my husband, children and other family members. I spent the next two weeks on an emotional roller coaster. I had good minutes, and I had bad minutes. My faith has always been very important to me, but I was too overwhelmed to pray.

I soon opened up to my inner circle.  My church family brought us dinners and picked up my kids from school. Lifelong friends who knew me during my mall hair days called me, wrote notes of encouragement and prayed. My mom drove eight hours just so she could prepare some of my comfort foods.

As a self-professed control freak, it was very difficult to open up and admit I needed help from others. I thought I could handle it all on my own, but in reality, I couldn’t. It was immensely comforting to know others cared and WANTED to be there for me.

It’s been like living with a gorilla

After several weeks with puffy eyes, a red nose and horribly ineffective make-up, I can honestly say I have peace about the situation. The second and third opinions have given me hope, but it’s still frustrating that no one can tell me exactly what is happening in my head.  The drugs have calmed the tremor a little bit, but they make me feel drunk and confused.  I don’t like what is happening, but I’m dealing with it.

This process has been like living with a gorilla.  The initial diagnosis introduced me to a big scary gorilla that was constantly on my back. It was with me everywhere I went, and it beat the emotional, physical and spiritual snot out of me.  Thanks to the second opinions, the gorilla got off my back and moved into another room of the house. (True to gorilla nature, it sometimes grabs a handful of excrement and throws it at my head.) It is still big and scary, but it isn’t with me all the time, and I know I don’t have to carry its weight alone. I hope the gorilla will soon move into the attic so I don’t have to see it at all; however, I acknowledge it will probably escape a few times and try to get on my back or fling crappy stuff at me. In time, I will have the strength  to pick up that bad boy and shove him back in the attic.

In the meantime, I  just have to let the gorilla tag along for more doctor’s visits, physical therapy sessions and drug experiments. He’s realized he can’t stop me, and I’ve realized he isn’t as big and scary as I first thought he was.




7 Responses to “The diagnosis that changed my life”


  1. No resolutions for 2014, just new experiences | Roadkill Goldfish - December 30, 2013

    […] I had to face a lot of unexpected fears in 2013 – my son’s cancer scare, my brain lesion, threats and hate from my blog and the Piers Morgan show. (Piers was by far the scariest.) I […]

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