A Post About My Dad (April is Parkinson's Awareness Month)

“Anne – this is difficult for me to read,” he wrote after reviewing this post. “It seems so dramatic.”

It is dramatic for a child to realize that their parent has a disease.

My dad, 2006
I first noticed it when they came to visit and we stood in a circle and prayed. I was distracted during the entire prayer by my dad's hand, involuntarily shaking in my hand. Maybe I had imagined it? I silently wished they lived closer for reasons other than the free babysitting.

Throughout the visit I watched him carefully. It was while we were eating lunch at Wendy's that I became convinced that something was not right. My dad had ordered a salad and had some difficulty bringing his the fork to his mouth. He sat hunched over the salad, the fork awkward in his hand, unable to pierce anything with it. Finally he managed to get some salad on the fork, only to struggle with getting the food to his mouth. I watched him with his mouth open wide too soon in anticipation of food that was not coming. He looked around as if to see if anyone was witnessing his struggle and I looked away before our eyes met.

I'd never seen him like this. My strong and able dad, moving in slow motion while the rest of Wendy's buzzed in fast forward around him. It startled me. We'd watched both of my husband's parents succumb to different diseases. It startled me to experience the realization that my parents were not immune. They always seemed so young to me, but now my dad's age (and my own) was showing.

Leaving the restaurant, I linked my hand through my mom's arm and walked with her to the car. "What is going on with Dad? Did you see him struggling to eat? How long has he been like this?"

She told me that he was having problems with tremors for a little while now. He'd fallen while out for his morning walk, I knew that. At the time I was not concerned because anyone can trip. Yet working with seniors as I do, I know that falls can be a symptom as well. Apparently he'd been feeling out of balance and went to an ear, nose & throat specialist for his balance. He didn't want to worry us kids about it so they hadn't told us. There was a Johns-Hopkins medical student in their small group from church who encouraged him to see a neurologist when she found out that dad’s signature had changed. But he hadn't gone to the neurologist yet.

After my parents flew back home to D.C., I did the natural thing that concerned family members these days do: I googled the symptoms that dad had. After a few clicks, I found myself looking at a checklist for symptoms of Parkinson's Disease.

  • Tremor - Yes.
  • Slowed Movement - I'd seen this while he was eating. And in his walking.
  • Rigid Muscles -  I had noticed that his one hand was often in a semi-fist with his knuckles white.
  • Impaired Posture or Balance - He had fallen recently. Working with seniors, I knew that falls can be symptoms of something more serious. And he was seeing the doctor for his feelings of "imbalance."
  • Loss of Automatic Movements - Mom had pointed out that he wasn't swinging his arms when he walked, and that he shuffled somewhat when he walked. At first I thought this was just odd. Now I thought it might be a symptom. 
  • Speech Changes - Truth is, I am a slow talker just like my dad. If his speech was slower than usual, I didn't notice. There weren't any other speech changes that I noticed either. 
  • Writing Changes - He'd lost his normal signature. 

As often happens to many people who turn to the internet for medical advice, I was worked up by the end of my googling session. As far as I could tell, he had six out of the seven symptoms on that list, and at the bottom of the page it said that if you experience any of the symptoms you should see a doctor to diagnose or rule out Parkinson's disease.

"My dad might have Parkinson's" moved very quickly to "my dad has Parkinson’s.”  

Well, it seemed to move quickly to me, living away from them, worrying for him. In actuality it took almost a year.

Not long after their visit, my dad saw a neurologist. Parkinson's cannot be diagnosed with a blood test, X-ray or MRI, but only through observation of specific behavior responses.  It took Dad's first neurologist about one year to go from a diagnosis of essential tremor (which many older people have but is not serious) to a diagnosis of Parkinson's.

During the phone conversation in which they told me of the change in diagnosis, dad made it clear that he did not want me to tell anyone, not even his siblings. He did not want anyone thinking less of him. And he did not want any special treatment. (This was not a promise I could make.) 

He and my mom are still involved in full time international ministry. This diagnosis did nothing to dampen their desire to travel to the other side of the world to do the ministry that is heavy on their hearts as God has brought them opportunities to do so. I think my dad was concerned that if others knew of the diagnosis, they might discourage him from travelling.

The neurologist prescribed medication that decreased many of the symptoms. Feeling well enough and able,  they decided to move to China when they were invited to do so. I was uncertain, knowing my dad’s diagnosis. There is no cure for Parkinson’s. It will get progressively worse. And yet, with medication, his symptoms were manageable. I knew it was better to take this opportunity now, when it presented itself, than to miss it entirely.

That’s something I appreciate about both of my parents. They've been willing to goThey've gone to China, Mongolia, Estonia, India, Kenya, Rwanda, Prague, Amsterdam, and many other places as they've been able. When an opportunity presents itself, they don’t look for reasons not to do it. Sure they count the cost. But the opportunity weighs in as an investment that is often worth the cost. I’m so thankful for their example in that.

When they moved back to the States, they moved to Rochester to be near our family. We have so much enjoyed having them just a couple blocks away. Since I did not grow up near my relatives, I am so glad that my children have been able to have their grandparents and their aunt close by these last couple years.

One of the nice things about living in Rochester is that the Mayo Clinic is located here, so we can be confident of pretty good medical care. My dad’s neurologist here at the Mayo Clinic has re-diagnosed his Parkinson’s as a parkinsonism.

 parkinsonism is a condition that presents itself like Parkinson's Disease, but is just a little bit different. In fact, according to dad’s neurologist, there are about twenty-two families of parkinsonisms, each looking a little different than the classic symptoms of Parkinson’s. My dad’s symptoms don’t seem to fit into a neat category. (But then, that doesn't surprise me because I don’t know that he ever fit into a neat category!) The doctors do not know which family of parkinsonism dad has, nor do they have a prognosis for him right now.

While I was at work the other day, I got an email informing me that April is Parkinson's Disease Awareness Month. I'd seen a lot of posts about Autism Awareness on Facebook, so I was aware that April was Autism Awareness Month but I had no idea that it was also Parkinson's Awareness Month. It occurred to me that I wanted to write a post about our family’s experience with it so far.

Before my dad was diagnosed first with Parkinson's, and then a parkinsonism, I really didn't know much about the disease itself except that Muhammad Ali had it and he shook like crazy when he lit the Olympic torch. When I heard that my dad has Parkinson’s, I pictured Muhammad Ali shaking and it scared me.

Since then, I've found out that Parkinson's disease is neurological and progressively degenerative. There is a part of the brain that produces a chemical called dopamine. Dopamine transmits signals within the brain that help with coordination of movement. It’s this part of the brain that is affected with Parkinson’s disease. The exact cause of Parkinson’s is unknown.  The disease itself is not fatal, but complications from the disease can be.

Most people live with Parkinson's for many years, often twenty or more, after the diagnosis. With medication the symptoms can be controlled and people who have Parkinson's can enjoy a good quality of life. Michael J. Fox is another well-known person who has Parkinson’s. He was diagnosed in 1991 and has continued to live a very active life.

Right now my dad is just taking it one day at a time. He is often in pain, though it is from arthritis more than his parkinsonism. He’s doing all that he can while he still can. Which thankfully, is quite a lot.

** This post was written with my dad's input. Thanks, Dad, for letting me tell a little bit of your story.

In addition to learning from my dad, here's some websites that I have referred to in my effort to learn more about Parkinson's Disease:


Amy said...

I'm glad your dad is doing well with the disease, though I know that it's still hard. I'll be lifting him up in prayer now. What a blessing that you all can be close.

Lucy said...

You did well describing this disease. My father in law passed away in 2006.
He had Parkinsons. Hard to watch someone deal with it but it sounds like your Dad is determined to keep going, so good for him...


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