12 February 2019

Making Progress

In 2012, long before Lizard was diagnosed with Parkinson's, I'd been given a helpful head's-up by a blogging friend. I had gone over the handlebars on my bike, breaking my wrist and damaging a camera and lens. I didn't realize until after completing Ride the Rockies three months later that I'd managed to re-injure my back in the process. But hey! I made it through Ride the Rockies!!!

The doctor took me off my bike for three more months (the broken wrist and cast kept me off the bike for six weeks while I should have been training heavily for Ride the Rockies). It was the second time in my life I wasn't sure if I'd ever be able to ride again, the first being after emergency back surgery in 2003, and I was super depressed, as well as in demoralizing pain.

At the time, the prognosis was indecisive. I may feel better with time, but I may need surgery again, which wasn't an appetizing thought at all. The surgery likely would result in a loss of mobility that might be worse than what the crushed disc was already causing.

My friend Chris, who had been battling a diagnosis of her own, told me many people will not understand the discomfort they cannot see and do not themselves feel. She had often been told, "Well, you don't look sick..." She told me not to let what other people don't see or understand get in the way of doing my best with whatever I could.

She also told me about the spoon theory... Each day, you have X number of spoons. If you use up all your spoons in the first half of the day, you won't have any spoons left in the last half of the day, and the day's end will be more difficult. More discouraging. More intolerable.

Later, I was telling that philosophy to another friend who also faces daily challenges, and she said she likes to use matches in that theory instead of spoons. She said if you light all your matches before you go to bed at night, you won't have enough power to make it through the end of the day. It's all about rationing what you do have to get through each day as successfully as you can.

Fortunately, my supply of spoons, or matches, whichever illustrates the difficulties better, increased over time, and my days are still improving.

For Lizard, however, since he was diagnosed with Parkinson's last August, we've been trying to determine the right balance and number of spoons or matches he has available each day. One of the most difficult lessons to learn so far has been that not every day will be a good day. He won't have a set number of spoons or matches on any given day. The challenges don't end there.

Lizard has faced co-workers and acquaintances who say things like, "I'm tired at the end of the day, too. It's not as big a deal as you think."

Lizard will be first to tell you there are two kinds of tired. There's the breed of tired after pedaling 120 miles over three high elevation mountain passes. That's the good kind of tired. Then there's the "no energy" tired he fights every day, sometimes every hour, with Parkinson's. The tired that doesn't go away, the tired no amount of medication or exercise can fix. The variety of tired that doesn't make you feel like you've just accomplished something extraordinary.

One of the adjustments we've had to make is a new stationary bicycle trainer. My trainer holds my bike steady. I can crochet or knit or even do an upper body aerobic workout while I pedal, and it's not going to send me into the wall or onto the floor. The yarn can get tangled up in the gears if I'm not careful, though...

Lizard's indoor cycling trainer was rollers. I always thought watching him on the rollers was like bicycle poetry. He was so smooth and so balanced! Last year, that changed, and tremors (temporarily) robbed him of the sport he enjoys most.

Once he and his medication were a bit stabilized, Lizard made the decision on his own to get a trainer like mine so he can ride again in winter without risking injury. He researched the different brands and varieties. He picked one of the top-rated trainers (which also carries a lifetime warranty!!!).

We were standing in line at the recreational sports store, waiting to pay for his new trainer, when a man approached and criticized our choice of trainer. "You need rollers!"

I wasn't about to tell a total stranger our health history, but I also didn't want to be as rude as I felt this man was being. We told him we had researched the trainers, and this was the one we had chosen.

After leaving the store (after stomaching a few more indirect insults for selecting the $300 model over the $1,200 model, which doesn't have a lifetime warranty), Lizard and I talked about how this man made us feel.

We shouldn't have to wear our diagnosis on our sleeves. We shouldn't have to explain our personal choices. And we don't have a real good aftertaste for that particular store or even the brand that was being pushed on us.

I tried to imagine myself in a sales position, which I must confess I would fail miserably because I am not a sales person at all. I tried to visualize an encounter with a customer who selected something different than what I was supposed to be selling. Visions of fast food restaurants played through my mind... suggestive selling, which I have always hated and still hate with a passion.

I told Lizard that if I were to see someone standing in a cash register line with a bicycle trainer, even if I was supposed to be selling a different trainer, my approach would be more akin to, "Wow, so you're into cycling, too?" rather than berating them for choosing something different than what I would choose. But I guess that's why I'm not in retail. I could never survive that world!

Now Lizard can train again in winter, and he's enjoying the new equipment. He even told me he likes being able to move his hands around while he's on the new trainer. Maybe I can teach him to crochet on the bike... Well, it's the thought that counts!

We are still researching everything we can to find ways to better deal with and manage Parkinson's. One day in December, I learned art therapy is sometimes very helpful for people with tremors. I read the article to Lizard, and he began coloring the very next day. Within two or three days, he said the fine detail really was helping him control the tremors because it forces him to concentrate on his right hand, which is more affected than his left hand right now. Within a couple of weeks, he was determined to one day create his own coloring books, and perhaps create a whole line of them for other people fighting Parkinson's. Now, is that positive thinking, or what?!?

Diet is another thing we've been steadily working to improve. Turns out the Mediterranean diet is best not just for everyone, but especially for people with neurological disorders. I'd been keeping pretty much to a Mediterranean diet since long before it ever became a thing, or at least a defined thing. Lizard had mostly gone along for the ride ever since we met... his weakness is bacon.

So now he's fully converted to turkey bacon, and my non-seafood lover is now eating fish at least once a week. (Cod in particular has shown health benefits for people suffering from Alzheimer's, dementia and Parkinson's.) I had to make the seafood change in my life back when I was training for my first Ride the Rockies in 2003. I was vegetarian at the time, and I was experiencing some serious bonking, which means inadequate nutrients to fuel such an active lifestyle. Nuts and beans were not enough protein to replenish what I was burning each day. I HATED fish! But I learned to like it so I could keep riding. It was easy for me to teach Lizard to slowly, carefully and constructively incorporate seafood into his diet.

Now he's doing some Mediterranean diet research of his own, and he says he'd like to become a Mediterranean chef!

He bowled me over on our second date when he fed me homemade chicken enchiladas. Now he's winning me all over again with his quinoa salads and whole grain pastas!

Life moves a little bit slower at our place these days. But that's okay. We're enjoying taking time to smell the flowers. Even in winter.

We'll never give up. Parkinson's is a progressive thing, and it's still progressing. Like Michael J. Fox, we hope for a cure, and hopefully in our lifetime. In the meantime, we're trying to make our lifetime the best it can be. Goal Number One!


  1. Yep! Been there a lot too. "Oh you look normal." "Oh, you should do this." Oh, you could eat a little of that." "Oh, just once won't hurt you." Blah blah blah. People just can't get it through their head that no everyone is the same. I just pffft most of them and keep on a going. As said, no one has a clue unless they've lived through it and/or live with it. Have to use my matches sparingly some days too. Could never eat fish though or it would kill me lol chicken it is. They think they may have figured my crap out, so we shall see. Here's to more good batch of match or spoon days than bad at your sea.

    1. Thank you, Pat. And same to you! I knew you were dealing with hand issues, but I had no idea it goes beyond that. I hope people will treat you compassionately, I hope they have figured out how to deal with whatever it is that is dragging you down. Many matches to both of our households!

  2. I don't have any issues, but this is good to remember for 'well meaning?' people. We don't always know what the other person's struggle is and we should not assume we do. Thanks.

    1. Thank you, Helen. I agree, plus, kindness goes so much further!

  3. I have dealt with this very issue when two of my children got late disseminated Lyme, both looked passable although much thinner and paler if you ask their mother, and doctors do that too with something that is far out of the norm , 1998/2005/ but progress has been made and society at large is much more aware of the disease. the same with Parkinson's. Kuddos for you and Lizard forging a new path and living your life as you deem fit to do it!!! God Bless and stay warm, from Iowa

  4. Thank you, Melody. I’m so sorry you had to go through Lyme with your kids and learn some of these lessons. I hope they are doing well now and that all of you are able to find much happiness!


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