Coming Back to Life

2008

Most people are wishing they could go back to pre-Covid. I'm wishing we could go back to pre-Parkinson's.

We can't step back in time, and we're stuck with this for life. So we are trying to make the best of it.

Parkinson's causes lots of restarts and do-overs. We can celebrate every milestone. Chances are, though, we're going to have to repeat milestones. Many times.

Every time Lizard rides a bit more, a bit longer, a bit stronger, we risk him not being able to ride again for a few days. Every time he takes a three-or-more-day-break from his bike, we have to start over from scratch. As if surgery was the day before, and he has to regain balance all over again.

Yet getting on his bike gives him a reason to smile. When you spend 10 or more hours a day being miserable because your medication has worn off and you can't take more for two whole hours, reasons to smile are pretty darned important.

2009

Lizard has been drooling over the temptation to build a new bike, a gravel bike. He knows it will be his last bike. He knows building it might take a very long time. He knows there is a very real possibility he might not get to ride the bike he wants to build. But, as he says, it would give his hands something to do when he can't control the tremors, and it would give his mind something to really focus on when frustration and depression are almost too much to bear.

So, yes, by golly, I'm buying him a new bike. A not-put-together bike. He will have to build it himself, and that's what he wants.

the road bike Lizard built in 2008

I've been trying to keep him busy with sudoku and crossword puzzles, coloring and quilting, but bikes are his real love. His first love. The thing he misses most.

His last road bike took him nearly a month to build. He was working full-time then. We may even have been training for upcoming charity rides. He probably could have built the bike in a week if he'd had the time.

Lizard's 2011 mountain bike

His last mountain bike took five weeks. Just look at that smile!

How can I not let him pursue the biggest dose of happiness he can achieve?

His favorite ride is the Triple Bypass, 120 miles in one day over three mountain passes (but now 110 miles). For the last few weeks, he's been reminding me how I used to take my lunch hour to try to get him in the Triple Bypass lottery because neither of us had smart phones back then, and he didn't have access to a computer at his work. Parkinson's steals your short-term memory, but sometimes, that long-term memory is sharp as a tack!

The Triple still sells out these days, but it and Ride the Rockies are no longer lotteries. Gone are the days of struggling to get registered. Now the struggle, for us, is quite different.

Back in 2018, we were waiting for Lizard's diagnosis appointment with the neurologist as Lizard prepared for the Triple Bypass. Back then, it took four months in Colorado to get in to see a neurologist for the first time. Who knows how long it would take now? Lizard had undergone an MRI two months earlier, and it would be two more months before we knew why his balance was deteriorating by the day.

2010

We didn't know if the problems Lizard was facing were caused by multiple sclerosis, Parkinson's or ALS. I planned to sell our house and buy an RV so we could go visit family while we still could if it was ALS. If it had been ALS, Lizard would be gone now, and I would be alone. So even though Parkinson's continues to get worse, sometimes every single day, I have much for which to be grateful. I still have my Lizard, and he can still ride. Even if riding has changed.

2011

The day of the Triple in 2018, Lizard's balance was so far off, I was frightened for his life. The Triple is not an easy ride. It is not an easy route. There are many places along the route where I would have no contact with him. But I couldn't bring myself to tell him he couldn't do it. I knew how much it meant to him.

2013

Ultimately, through three hours of what was beyond torture for him, he decided it would not be wise to ride that day. He has wanted a second chance ever since. After his knee surgery (and before Covid), he thought he would be able to ride the next Triple, which was cancelled due to Covid.

2014

We were training for charity rides we thought we might be able to tackle, if they occurred, during the spring of 2020. (All ended up being cancelled.) On April 29, 2020, Lizard suddenly couldn't get his leg over the bike anymore. Back surgery was performed in August of that year. Prior to both surgeries, we were warned the trauma might advance the Parkinson's. And it did. Both times. But Lizard would not have been able to exist without those surgeries. We weighed the options heavily. We knew it wouldn't be perfect, but it would be better than what we had.

I have to step back sometimes and remember that now. What we have now, although challenging, is better than what we had prior to the new knee and the new back. He could barely walk before the knee surgery. And he was slowly losing the ability to do anything prior to back surgery. Yes, we have to live with Parkinson's, but he can walk, and he can ride.

He kept asking me earlier this month if I thought he might be able to do the Triple again. I have told him since before we knew about the Parkinson's that he could ride whatever he was able, and I would pick him up when he was done. Even if he could ride only three miles.

Now that three miles is a genuine limitation. Or option... Yet it would bring him so much joy. It's such a healthy goal. It gives him reason to keep trying.

So, yes, goodness gracious, I've registered him for the 2022 Triple Bypass.

Or, shut up, Parkinson's...

The charities the Triple supports are worthy, so it doesn't really matter if Lizard can ride or ride far. We'll be supporting great causes. And if he gets to ride, even just a little bit, it will give him hope. It will give him joy. It could help him gain at least a little power over the power that is relentlessly trying to consume him.

Last week after the snow melted, our neighbor went on a little ride through the neighborhood with us. It was Lizard's first time back on the bike in at least a month. I thought we'd be going to the end of the street and back. We wound up riding three miles, which was quite the surprise for our neighbor, and quite the undertaking for Lizard. He wasn't able to ride at all again for a full week. And then we had to start over again. But we are getting accustomed to that routine now.

This is going to be a long process, and it's going to take a lot of patience and self-governance. But I think it is such a wonderful goal, I am so grateful Lizard is willing to keep trying. I hope, no matter what the future brings, he never loses that tenacity.

January 2017

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