Another Birthday on the Other End of the Spectrum

Our granddaughter turned free!

That’s what comes out of the mouths of three-year-olds who haven’t quite mastered the “th” sound yet.

When I ran my little toddler school, which I called Playgroup — and many of you, our loyal friends and supporters, have become part of the stories I share on this platform — children could enroll at the age of two. That meant I got to celebrate their third birthdays and hear them proudly announce their new age when asked:

“I AM FREE!”

It’s one of those little things that stays with you for the rest of your life. And I hope it stays with them, too.

A little trip to Austin

Our trip to Austin went pretty well!

Coby, James, and I traveled together to meet up with family from both sides and celebrate this precious little life turning three.

Children are life in its purest form: a gift of joy, love, and hope. Some of my own blood runs through this little being of love and light whom I get to hold and love.

I am so very, very lucky.

James and Coby returned to California a few days before I did, so I got to enjoy a little extra vacation time with my little family in Austin.

Thank you, Coby, for making that possible!

And now, back to life with Lewy…

So, what has been happening around James in the weeks since my last update?

Well, James continues to roll off the road to the right with his trike almost every time we head out for a ride.

There are two things at play here.

The “Lewy Lean” is what family members, caregivers, and doctors sometimes call the sideways or forward bending posture that can occur with Parkinsonian symptoms. Medically, severe leaning to one side is sometimes referred to as Pisa syndrome. It can affect balance and make riding, walking, and even sitting safely much more difficult.

The second factor is something called target fixation. This happens when a person becomes so focused on an object or obstacle that they unintentionally steer toward it rather than away from it.

Put those two together on a recumbent trike, and you can imagine the challenge!

So far, James has managed to roll off the road in places where the terrain was forgiving enough that he escaped without injury — apart from a few bruises to his already bruised ego.

One incident, though, gave me quite a scare.

James was riding ahead of me. It happened so quickly. One moment he was there, and the next he was rolling down into a bush!

I hurried down a fairly steep bank, worried about what I might find. Luckily, a rather accommodating bush had caught him, with his feet pointing back up the slope. His trike had followed him partway down.

Getting him and the trike untangled was quite an undertaking.

Fortunately, a very friendly guy traveling in the same direction sensed that something wasn’t right. He had already ridden farther down the road, but when he noticed my Merlin lying on its side, he decided to turn around and check on us.

He looked down and saw us struggling. After removing some of his motorcycle armor, he made his way down and helped pull us — James, the trike, and me — back up to safety.

We were very grateful! (See photo.)

Unfortunately, this is no longer an isolated incident. On longer rides, James now seems to end up in the ditch every single time.

The adventures never cease, and learning to understand what we are dealing with is a daily lesson.

But do we give up? No!

We keep rolling — up and down, sideways and diagonally. Life can be scary enough even without Lewy hanging around, so we do our best to avoid getting hurt while continuing to do the things that make life worth living.

The unexpected visitors

Which brings me to our daily visitors — or intruders, depending on how you look at it.

I have almost gotten used to them, and so has James. Apparently, they have a routine of their own, and we have both become somewhat accustomed to their appearances.

Okay, they are odd, but not unfriendly!

The other day, James came into the kitchen and announced:

“I am hallucinating again.”

That was a first!

Naturally, I asked him how he knew.

He explained that a group of people was sitting outside by the barbecue, dressed in light summer clothing. It had become so cold at night that he found it unlikely they could be real, given that none of them seemed the least bit uncomfortable.

Well, I was impressed!

The ability to recognize that something might be a hallucination is encouraging in that moment, although it certainly doesn't make the experience itself any less concerning.

Of course, things aren't always so straightforward.

Sometimes James sees people he actually knows. He might tell me that Coby came to visit and spent time with him while I was away for the entire day — even though Coby had never been there.

James remembers the encounter, but because the person is familiar, he doesn't necessarily question whether it really happened. He simply wonders why Coby didn't speak to him.

And that is what makes this so confusing. The line between what is real and what isn't can be incredibly difficult to navigate.

Losing pieces of the man I love

Confusion has been at the forefront these past few weeks. I find myself seeing less and less of the James I have known and loved for so many years.

Sometimes it feels as though only a shadow of him remains.

It breaks my heart.

Today also marks one year since my mother died. The world feels so different from the one I knew then.

And here we are, continuing our journey into an unknown place — a place that can be frightening, confusing, and heartbreaking.

We hold hands. We hold on tight.

We look at the photographs on the digital frame that James' friends Chris and Paula gave him for his birthday. Images from all those years of cycling around the world keep moving across the screen.

There we are, riding through landscapes we once called our temporary homes, discovering new places, meeting people, and living a life full of adventure.

A life that sometimes feels as though it belonged to another lifetime.

How can that world feel so far away when the photographs are right there in front of us?

These days, we are holding on for dear life — holding on to what we still have, to our stories and memories, to the love that remains, and to all of you who continue to cheer us on with your loyalty, kindness, and support.

We cannot know what lies ahead. But we know that we are not alone.

Thank you for continuing to walk — and roll — alongside us.

With love and gratitude,

James and Margit