The Road Goes On…
James finished his 69th trip around the sun on 9/11.
James’s dear friends from Cincinnati came to successfully distract us from September 10th–13th. I honestly don’t remember when I last laughed this much in the past few years.
Before they arrived, James had moments of not being too sure about letting friends who have known him for more than 40 years “see him like this,” as he put it. But then he “let it go” and became excited about the reunion.
They’ve already been through a lot together, and somehow, through all those years and all those adventures, their friendship has only grown deeper.
The ups and downs with Lewy are dizzying. Keeping an even keel at this point is almost impossible, but we keep balancing on this little rope of hope for quality time with each other and with the people we love.
Talking about balance…
James’s PT instructor is trying to implement balancing exercises. That may be the reason James—whose balance has become more and more of a challenge—is more than lukewarm about going back.
Yesterday, James and I attempted a biggish ride up our favorite mountain around here: Mt. Tam.
This time, we wanted to extend the ride by going up Panoramic Highway to Pantoll and then on to Ridgecrest.
We packed a hearty lunch, yummy cookies, electrolytes, protein bars and drinks. We loaded up with some of our old touring gear and tricks. The weather promised easy temperatures and blue skies.
James was slow to begin with, but he was a good sport. My patience is always challenged these days… so, nothing new.
Oh, that reminds me…
Stress comes in many colors.
Our house and the circumstances around it are still insecure, as is our financial situation. Add barking dogs keeping us awake at night, and our highly unstable situation has been finishing me off with a lot of sleepless nights these last couple of weeks.
Luckily, I seem to catch up when it is needed. Every once in a while, I sleep like I need to. Almost as if it doesn’t matter if the world is going to pieces around me.
I wake up and surprisingly feel well-rested.
I guess my body knows how to keep me going so I can be here for James.
James’s sometimes-friendly and sometimes-frightening visitors—just in case I haven’t mentioned it before, we no longer want to call them intruders—show up regularly, especially at night.
Not exactly a good recipe for a good night’s sleep for either of us.
Our dentist visits have also taken a toll. Financially and physically. At this point, we are focusing on keeping any kind of infection out of his body as best we can.
Then we had a bit of a scare with what appeared to be AFib symptoms. At one point, James’s heart rate had gone up to 183 beats per minute.
I was so focused on his blood pressure—which, at this point, was completely normal… go figure—that I didn’t notice his heart rate was so high.
So now our “Sorgenkind” is wearing a heart monitor for the next few weeks.
Again, I have to say that our doctor team is the cream of the crop. Needless to say.
And just in case you were wondering:
There is still no cure for Lewy Body Dementia.
We are treating symptoms. That’s it.
The medications are dialed in as best as possible, and we keep adjusting as we go.
Oh, shucks. I wanted to tell you about our day riding up Tam.
So…
Up Olema Hill, down 1 on our way to Stinson Beach.
I was up front, of course, and waited by the lagoon at the elementary school right before town.
I waited.
And waited.
Ate a PowerBar.
Thought about the yummy lunch “burning a hole in the panniers.”
Then two SUVs pulled up by the crosswalk at the elementary school.
“Are you associated with the cyclists on a trike back there?”
“He went off the road and is stuck in a ditch by the lagoon.”
I turned around and raced back.
I had already seen the commotion on the roadside about a mile back.
The reason I didn’t pull out my phone to take pictures was because I was too shocked by what I saw:
James and the trike were halfway in the water, down a very steep, treacherous dirt bank off the paved road.
He was just crawling off the bike, and a woman was reaching out her hand to him.
I jumped into action, while two men came running from their lunch break to help us.
James was bleeding from his hand and foot, but he was moving and seemed alert.
He said he was OK.
Everything happened pretty fast.
The four of us got James back onto the road and then hauled the trike up as well.
The back mirror had broken off. His visibility flag was snapped.
And then we realized his phone was missing.
One of the men scrambled back down the bank and—luckily—retrieved James’s phone from a bush.
Not the water.
A bush.
What a miracle.
Our three rescuers asked what we wanted to do now.
“Call 911?”
James and I were on the same page after a quick assessment. Things weren’t as bad as they had first appeared.
We decided to continue to Stinson Beach, have our lovely lunch, and reassess.
So we did.
Even though the little town was completely fogged in, we cleaned ourselves up, enjoyed our lunch in that sweet little park, looked at each other and said:
“We are OK.”
In spite of it all.
And then we continued up the mountain.
That, in a nutshell, is where we are right now.
Still riding.
Still wobbling.
Still finding our way through the fog.
Thank you for hearing our stories.
Thank you—all of you—for helping us out and keeping us going.
Thank you for sharing our stories with those who will listen.
And most of all:
Thank you for your loyalty, generosity, friendship and love.
With our wild hearts full of thanks and deep-felt gratitude,
Until next time…
James and Margit
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