A Desert Visit, A Ride Up the Mountain, and Reality Checks
And here we are… time has never seemed to run faster than it does now.The road trip to the desert to visit James’s brother is happening. We drove almost nine hours, and now we are here. For me it feels a bit like a mini-vacation in a way… sharing James with his brother.
There is a familiar connection between them, even though they seemed a bit estranged during the first years after I met James. Right now, while I am writing this, they are sitting together working on James’s taxes. I get to be in a room alone on the other side of this big house in the desert.
In the days before our departure we had some ups and downs… life with Lewy Body Dementia, but also just life being life.
Lately we have been connecting our errands with some fun detours. My dentist appointment in Bolinas, for example, turned into a rather pleasant ride home via Mount Tamalpais.
Though I have to admit that after a lavish lunch on Bolinas beach — clean teeth and all — I was feeling ambitious and mentioned to James that I’d like to ride up BoFax and then continue along Ridgecrest before heading down and home.
So much for riding Ridgecrest. I opted out. My legs were numb just getting up Whites Hill to make it home. But hey — it was still a glorious ride, and James almost felt like his old self again. (Okay, okay… he had a little help from the pedal-assist on his recumbent trike while I had to face my own demons of realizing that my body is getting tired.)
The next week another errand took us to James’s doctor in Point Reyes.
Lately I had been wondering why we seemed to be drowning in Medodrine — the medication James takes for low blood pressure — when I remembered that the UCSF neurologist had once suggested increasing his dose from 5 mg to 10 mg.
So that morning, before we started cycling, James took 10 mg instead of his usual 5 mg.
The ride to Point Reyes went fine, but after about an hour and a half — luckily we were still at the doctor’s office — James suddenly started shaking, sweating, and complaining about severe neck pain. He became anxious, disoriented, and unable to move.
Two years ago he had the exact same reaction when he was told to take an extra dose after a severe drop in blood pressure.
Since we recognized what was happening, the doctor made him as comfortable as possible and monitored him until he was able to function again.
James is a trooper… we still cycled home via Nicasio — just not via Marshall and the Marshall Wall as originally planned.
James remained somewhat compromised for another day before the medication seemed to wear off completely.
Another lesson learned.
All in all — and to be perfectly honest — Lewy is taking up a bit more space lately than I like to admit.
Reality was also gently pointed out by James’s brother Jay, who hasn’t seen him in eight months.
Yes… some days are better than others.
Right now I’m not sure what else to say.
Your support — emotional and financial — continues to give us breathing room as we navigate doctor visits, medications, and the unpredictable rhythm of this disease. It truly helps more than we could ever express in words.
If our journey touches you, feel free to share our update with others who might want to follow along.
For now we’re enjoying the enormity and quiet of the desert’s sunsets and a little brother time for James.
The road continues… just a bit slower and more careful than before.
I will keep you all updated. We are driving home from La Quinta this Thursday. Some wheels are still turning
Thank you for being here with us.
Thank you for listening.
Thank you for helping.
Thank you for rooting for us.
Margit and James
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