24 March 2020

A Walk in the Park...inson's

Friends, loved ones and readers have been asking for updates for quite a while on Lizard's Parkinson's and knee replacement and how these things affect me. Now, everyone also is asking if working from home makes things any better or easier. Initially I'd planned to do a Parkinson's update today, but I guess it would be timely now to talk about the whole picture.

Overall, I am very thankful to be working from home most of the time; I still periodically have to go in (as long as the building remains open) for critical duties, but I am home most of the time now, and I love being able to take care of Lizard. I've known since his diagnosis 19 months ago the day will come when being Lizard's caretaker will be my only full-time job. I've been okay with that from the beginning. It wasn't how we planned our future, but I will do whatever it takes to make him comfortable and keep him safe.

There were days during the last four months when I feared I might have to retire early. As in, NOW. I am nott sure I am financially prepared for that yet. The trauma of major surgery to someone with an aggressive, fast-moving strain of Parkinson's is overwhelming. Lizard's December total knee replacement ultimately has resulted in him walking better than he was walking prior to surgery, and for that, I am most grateful. Staying active is a key to slowing the progression of the disease, and without being able to walk, he would not be able to slow the progress. Period. Yet there have been many days when both of us have wondered if we did the right thing in proceeding with the surgery.

There have been some terribly frightening days. But there also have been joyful days, such as the first time he was able to do a full rotation on a stationary recumbent bike.

This particular recumbent bicycle has shorter cranks, or the arms connecting the pedals to the bicycle. That means less knee bend required. Lizard had been having great difficulty not only staying motivated, but also in trying to do just half-pedals for what seemed like forever. Turned out he had a build-up of scar tissue, and he had to undergo what they call a "manipulation" to break it up in February. He tried so hard and worked non-stop for so long, yet made no real progress in being able to bend his knee adequately to turn bicycle pedals until after the manipulation.

He'd already taken a few steps backward in Parkinson's following the surgery, so putting him under again for the manipulation was terrifying. I didn't want to lose more of him than I've already lost. But if we didn't increase his ability to move and decrease the level of pain, the Parkinson's would continue to get worse at a faster rate.

Seven days after the manipulation, he spun on that recumbent stationary bike. I could have jumped over the moon!

One week later, he was able to get a full stroke on a full-sized stationary bicycle, even though he would grimace and complain about using "too much body English." At least he could recognize he needed to continue to work in order to be able to balance on a bicycle! I had been so worried that part was gone forever!

Two weeks ago he took a tiny little spin - literally - around the driveway on his mountain bike. Our stay-home mom neighbor noticed him trying to stay balanced via an upstairs bedroom in her house, and she promptly let me know because I was at work, and he was home alone. "I can't believe our neighbor ratted me out!" he exclaimed when I called and asked him to please wait until I got home so I could watch.

That weekend, he tried riding in the street right in front of our house while I watched. He did two circles, then he did a larger circle, then he went two houses down, all the way back and two houses in the opposite direction before returning to our driveway, thoroughly exhausted but more motivated than he had been in months because he no longer had to fret about never getting back on his bike again. He could do it!

It's still going to take a long time. We are working on balance, but he's doing well, finally making progress, and fully embracing hope.

We finished up PT at the distant surgical center in February. Initially, we both thought Lizard might be done with PT. As I helped him fill out the exit interview, we both realized he still had quite a way to go. He couldn't get in and out of the tub alone; he still had (and has) great difficulty getting in and out of bed; he still isn't able to do the things he loves most; and he can't hop on two feet or one. Not that he needs to, but, it means he would benefit from additional therapy.

Ever since December, I wanted Lizard to be able to go to the physical therapist who worked with me three years ago. It makes sense that Lizard's orthopedic surgeon wanted us to work with someone who works with and communicates well with the surgeon. I am extremely happy we are able to go to someone closer and less expensive now.

The physical therapist I worked with quit the week before Lizard was to start at the closer business because she had a baby. Her replacement began the day before Lizard's first appointment there. She was assigned to Lizard.

On appointment day, we learned this new physical therapist has advanced training in Parkinson's. She's going to help Lizard with his knee, but she's also working with him on balance and coordination. I didn't even know you could ask for PT for Parkinson's until this happened, but the timing has shown me once again, in big, loud letters, God loves both of us, and He's got the big picture. He gave us exactly what we needed right when we needed it.

Now that I'm home with Lizard at least six days a week, I'm minimizing exposure for him, I get to have lunch with him, I get to monitor his progress on his at-home stretches and exercises, and he can't take off on his bike without me knowing about it. Ha ha! He doesn't, but I'm sure there are many times he would like to, if he could.

I see his daily struggles. But I can also try to build his confidence.

If I was raising teenagers (which I actually did at one time), I would be trying to train them to do everyday things such as turning off lights and water when they are done with them, putting away milk after getting a drink, and sorting silverware, dishes and laundry. But Lizard is not a teenager. These things will get worse with time. Once in a while, he will notice he left the milk out or forgot to close the garage door or forgot to take his pill when he turned off the alarm on his phone telling him it was time to take a pill. He feels like (and announces) he is "a lemon." I continually tell him he is a peach... he came from Peach Country on the West Slope of Colorado.

When I see he has forgotten something or hasn't done something up to expectation, I can zip along behind him and correct whatever is not right. I get to build his confidence instead of strip him down, and I can be there for him when he needs help.

For a long time, he refused any degree of assistance because he doesn't want to be "helpless." As his finger dexterity has diminished, he has reluctantly conceded there are some things he just can't do. But I can keep trying to encourage him to do things he can do and practice things that might help him build strength, concentration and/or coordination.

Everyone wants to make sure I'm taking care of me, too.

We weren't getting to go up in the mountains or take exotic bike rides before social distancing and Shelter in Place. I miss those times. I won't lie. I wish we could be spontaneous and take a weekend trip to The Wave or Yellowstone, or even just go cross-country skiing on the Grand Mesa and get the Valentine's Day treatment at the little hotel in Parachute. Being in the car is more than Lizard can tolerate, so we may be stuck at home for more than just the current simulated lockdown.

Working full time and being a full-time caregiver can deplete energy resources pretty darned quick. I confess there have been nights when I've cried myself to sleep, as well as nights when I can't sleep at all. But as I've said before, I have the power to turn my grief into gratitude.

Last month, I realized if Lizard's diagnosis had been ALS instead of Parkinson's, we would be at the end, and my time with him would be about over. He would not be able to spend loving moments with me when all his current medications have kicked in. He would be far more disoriented. Most likely, at 19 months, he would no longer be with me.

As long as I can keep that in mind, it makes it so much easier for me to keep going.

It is so hard to watch the person I love the most slowly slip away. So I must instead focus on the moments when his humor takes charge. The instants when he realizes my back is sore and I could use a massage. The times when he sneaks up behind me and tries to bear hug me. The 3.5-mile out-and-back he was able to wobbly ride last weekend on his mountain bike.

We can make the best of every single day we have. And now, I get to spend more of each day with him. I have 3.5 to 4 hours more each day when I don't have to commute, and I can use those hours to pamper him.

That brings back the sparkle to his eye, and the sparkle in his eye still to this day electrifies me. Always has. Always will.


  1. Your are a strong person. Wow. Take care!

    1. Thank you, Regula! Hope you are doing well, too!

  2. Great that he was able to get his knee going again after the manipulation. Getting assigned a physio that knows Parkinsons sure is a win too. Had to laugh at the neighbor ratting him out lol We sure do have to put one foot in front of the other.

    1. It has been such a difficult road, Pat, but things are aligning now. Well, not in the world, but at home, things are beginning to return to an almost normal state! Hope you are hanging in there, healthy and safe!


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