I'm Going There: Young-Onset Parkinson's Disease

I started this blog in January, with the goal of writing about my life, which has a lot of good and some bad. While I have written extensively about my daughter and her medical issues, my son and parenting challenges I face, training for my half marathons and triathlon, cooking, and a host of various other topics, I have yet to write about my husband. And this is a big one.

You see, my husband has Young-Onset Parkinson's Disease (YOPD, or PD). He was officially diagnosed a few months before A was born, at the age of 35, although he was having symptoms before that.

I am not sure why I haven't written about J having PD. It's probably due to the fact that I hate it, it upsets me to no end, and I like to pretend it isn't happening to him. To us. To write about it is like opening a can of worms for me. But I think that now, eight months after starting this blog, I am ready. I will start slowly with this post....I will write about how he came to be diagnosed with a disease that usually hits people in old age.

It all started (for all intents and purposes) in 2004. I was pregnant with D, our firstborn. I went on the computer one day to get online, and was about to google something when I noticed that J had just done a search for "shaking finger" or something like that. I thought that was an odd thing to google, so I asked him what was up. He told me that his finger had been shaking recently, and he didn't know why. I urged him to go to his doctor to get it checked out. Of course, being a typical guy, J didn't go right then, and wanted to wait until his scheduled physical in the fall. I kept telling him to get it checked out sooner, but he didn't listen to me. (Note: I am not making judgements. It took me years to finally get my headaches checked out by a doctor; now I am diagnosed with migraines. I get the not-wanting-to-know thing).

Anyhow, in the fall of that year, J finally went for his physical. He came home in a good mood, saying that his doctor told him that the tremor in his finger was due to stress and was no big deal. I flipped out; I knew it wasn't stress-related. I am (in my past life) a Marriage and Family Therapist, and I know the physical symptoms of stress and anxiety. People may get a raised heartrate, sweaty palms, and decreased appetite, but a shaking finger is not a stress symptom. I urged him to go to a neurologist. He didn't want to go; he trusted his primary physician. Finally I told him that if he didn't go, I was going to call his mother and tell her what was going on. This scared him into action--he knew his mother would freak out!--and he went back to his primary care physician to get a referral for a neurologist.

Finally J saw the neurologist. As I had suspected, the shaking finger WASN'T stress related. The doctor said it could be caused by many things: Parkinson's Disease, a stroke, a brain tumor, or other diseases. I remember the next morning getting in the shower. J had already left for work, and our newborn, D, was in his bouncy seat next to the shower stall. I was freaking out, thinking about my husband possibly having a brain tumor, and here we were a young married couple with a newborn son. I sobbed and sobbed. I prayed that day for it to be PD, because the idea of some of the other possible causes were too frightening to imagine.

J soon began a series of tests to find out the cause of the tremor. Blood work, urine samples, MRIs...you name it, he had it. The thing with PD is that there is no test for it. Unlike cancer, you can't take a biopsy to diagnose it. Unlike diabetes, you can't take a blood sample. With PD you have to rule everything else out, and what you're left with is Parkinson's. A year or so later, his neurologist was convinced that he had PD. Our daughter, A, was born in June of that year, and if you're a faithful reader of this blog you know what a roller coaster we've been on with HER!

Since then the tremor in his finger has gotten worse. His whole right arm shakes now, and he is just starting to feel a bit of tremor in his left hand. His speech and gait are affected a bit. He is on lots of medications, which seem to help a bit.

I'm sure at some other point I will write more about this...my anger, my concerns, my fear....but I feel better for getting this written down now. I am hopeful that there will be a cure one day; I just hope it's in time to help my wonderful husband.