20 November 2018

Park it, Son

I recently announced Lizard and I would be taking our charitable fund-raising efforts in a new direction. My snowflake blog posts can get more than 8,000 hits per day this time of year, so I didn't reveal in that day's snowflake pattern the identity of the very dear loved one who has been diagnosed with Parkinson's.

On August 29, we got The Lizard's diagnosis, but our life began changing pretty radically about four or five months earlier.

He'd lost his sense of smell a few years ago. We didn't know then that was something to which we needed to be alerted.

The tremors began a few years ago, too, but they weren't serious enough to raise concern until this year. I thought "the shakes" were because he was drinking too much coffee. When the tremors began progressing and traveling from his right hand throughout his entire body earlier this year, Lizard quit caffeine cold turkey. It didn't help. That's when I first realized something might be wrong. I knew it might take six weeks or so for the caffeine to clear his system, but I didn't expect the tremors to get worse after he quit drinking coffee. They did.

His restless legs became almost unbearable. He couldn't sleep. He became hypersensitive, continually on sensory overload. His writing had become much smaller over the past couple of years, but I didn't know that was a symptom until we began looking up symptoms.

Sometimes I would say something to him, and it would take him longer to respond than I thought it should. Sometimes he seemed to be having difficulty making decisions. He couldn't tolerate crowds at all. His gait changed. He was hunching over more and more by the week. He was losing his confidence on his bicycle, and his equilibrium grew worse until it became downright scary. Ultimately, he was not able to ride any of the rides for which he'd signed up this year.

He'd planned to ride the 30th anniversary Triple Bypass, a grueling one-day 120-mile three-mountain pass bicycle ride boasting more than 10,000 feet of elevation gain. This is his favorite of all the rides in which he has participated.

I didn't want him to ride the Triple this year, but I didn't want to tell him he couldn't do it, either. I was really worried. There are some super steep drop-offs along the route, the highways are not closed to traffic during the ride, and it could get very hot on some of the toughest climbs. I'd witnessed the heat completely melt him during a training ride, and his whole stance on the bike, once so powerful and poetic, now seemed so wobbly...

Typically, we get up at 4 a.m. so he can start the ride before the sun comes up and finish before any potential thunderstorms build. At 5 a.m., he was still trying to decide whether he should try. At 6 a.m., he said he wouldn't be able to finish before the storms built. I told him he could ride as far as he wanted, and I would pick him up when he felt he couldn't or shouldn't go any further. By 8 a.m., he'd decided he didn't have enough balance to ride. I was relieved, but my heart was broken for him. I knew what this ride meant to him.

His doctor ordered an MRI, and then we had to wait eight weeks for an opening with the neurologist. During those excruciating 58 days, we didn't know if he had essential tremors, hypertension, multiple sclerosis, Parkinson's or ALS, or a combination thereof. For eight nightmarish weeks of further deterioration, we made plans, just in case it was ALS.

We would retire, and he would try to finish off what 14ers he could, if he could. We would sell the house and buy an RV so we could visit the loved ones we wanted to see before the end. We both tried to convince ourselves and each other that it would be okay because both of us had lived very full lives, and we didn't waste much time at all. We had so much for which to be thankful.

Lizard clung to his independence as mightily as he could and refused to allow me to go with him for his first appointment with the neurologist. I worked through the day and tried to be patient while waiting for him to call or email to let me know the diagnosis. He never contacted me. I assumed the worst. He would be mine for six to nine more months, and then he would be free of the misery he was experiencing. I would be alone, but with many happy memories and a love I'd never imagined could happen to me before we met.

I cried all the way home that night.

He was in good spirits when I walked into the house. I calmly asked about the results. He calmly told me he has Parkinson's, likely early onset, and he's probably had it for at least five years, if not longer. Medication would begin the next day, and if the medication worked, improvement would seal the diagnosis.

Relief washed over me, but I couldn't understand why he didn't tell me earlier in the day.

"Because I'm going to be okay," he explained. He thought I'd take no news as good news. It makes me giggle now, but at the time... oh, my gosh. Yet I was SO grateful I wasn't going to lose him in a few months!!!

That night and the next day, I had the chore of informing loved ones and friends who were waiting on pins and needles the whole time, just like us. My parents, who both have health issues of their own, both were so supportive and so loving. The first words out of both of their mouths was assurance that Lizard would be okay because, "Michael J. Fox has had Parkinson's for years, and look how well he is doing!"

Later I would learn Michael J. Fox is indeed doing remarkably well, considering. But the very same symptoms afflicting my Lizard take their toll on the actor, too. Parkinson's is a progressive disease. It gets worse and does not get better, although people affected with it certainly experience some good days to go along with the bad. There is no cure.

I like the attitude of Michael J. Fox. He has famously said, Parkinson's "is not a nebulous cloud of doom that hangs over my head. It’s a set of challenges, and there are rewards in meeting those challenges."

Lizard's medication did make a difference... almost immediately. He was able to sleep the first night of what he calls his new normal. His sensitivity isn't off the charts now, sometimes the tremors aren't very bad, and he's back on his bike. He's got his sense of humor back, and that makes me incredibly happy. We don't know how much of what he lost he will get back, but he says, "Parkinson's will find me to be a formidable enemy."

Watching this powerhouse cyclist become a mass of tremors while not being able to do a thing to help him was one of the most difficult challenges I have encountered in life. Today, he asks me to go with him to see the neurologist. I sometimes have to remind Lizard to swing his arms when we walk around the lake, and life is a bit slower and a bit more relaxed than it has been for 13 years. I'm back up to 45 miles in a day on my bike, and although his mileage is not building yet, he's doing some single track he didn't think he'd ever be able to do again. He said he's learning to coach himself. He's had plenty of practice - he's the best coach I've ever had!

We don't know if next year's Ride the Rockies will be a realistic goal for either of us, but we'll have fun training and trying to build upon what we've already gained. Not one training ride will ever go to waste, even if we can't do big rides anymore. We're keeping our bodies healthy, and we'll never stop looking forward to the possibilities the future might hold.

There have been some dark days this year. But spring is on the way. The light is coming. We just have to keep reaching for it.


  1. Never suspected the Lizard was who you were talking about in the other post. At least it's one he can fight back against and not a death sentence like ALS. Great the medication is working and he can enjoy what he loves to do again. True, MJF has lived with it for a long time. Never knew that about sense of smell. Mine went poof 18 months ago.

    1. Pat, you should definitely get that checked, just in case. Yes, we are extremely thankful it wasn’t ALS, and we are fighting with all we’ve got. Life is different now, but we still have so much for which to be thankful!

  2. Thank you for sharing this - I know that it was a lot harder in real time that after the fact - but knowing that you will make it through this makes me happy. Parkinsons affects so many, and your fundraising efforts are greatly appreciated!

    1. Thank you, Alycia. I join the throngs who will give whatever they’ve got to help find a cure.


Dusty words lying under carpets,
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locked inside, hidden deep from view?
You can talk to me... (Stevie Nicks)

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