Help James Navigate Life with Lewy Body Dementia

When James and I met in 2009 on November 1st, he asked me while pedaling down highway one along Tomales Bay to Point Reyes just past the Marshal Store, “do you want to cycle with me to the end of the world?”

It took us two more years before we got on the road in May 2012 to cycle through the Americas. We pedaled for two years to reach the southern tip of Argentina - the last town before the Antarctic: Ushuaia.

We came home for a few years, but set off again across the US, flew back to Buenos Aires, north through Brazil, flew over from Sao Paulo to South Africa and cycled north. The pandemic had us settle comfortably for 6 months in Malawi and another 3 months in Kenya.

We flew home to the US again for a while, but set off again in 2022 touring Europe starting in Portugal when James started to find himself compromised physically but also energetically/mentally. He was losing strength and mental capacity. Touring became an ordeal. After some search for a name for what is going on we found a neurologist in Germany who agreed to set up a day of tests to find an explanation for

neck pain, disturbed sleep with vivid hallucination,

lethargy, extreme low blood pressure,

lack of motivation, lack of balance

8 hours passed, but no diagnosis. She hinted at possible dementia.

We celebrated New Years 2023 in Berlin with my family and friends.

We rolled south, housesitting in Italy as James’ symptoms worsened. We remained in denial about James’ decline as we rolled north to Holland. James fell off his bike over and over again.

He was admitted to a hospital in the Hague for extensive tests.

We needed to get real!

We flew back home and James went straight to Marin General hospital in the middle of the night. Despite the best efforts of many specialists, 5 days went by without a diagnosis.

It’s been a year here at home (with housing uncertainty looming; our landlord is 91 years old).

We finally got an appointment at UCSF, and we received the sad diagnosis of Lewy Body Dementia.

Our life is upside down, and it is obvious our lives as global bike nomads is over.

We are navigating new mountains (such as medical bills) and fording new rivers of challenge, and adjusting to the so-called easy life of Marin county.

Robin Williams ended his life because he and his wife couldn’t get a diagnosis in time to help them understand his plight.

We have the advantage of a name for our awful “thing”, aided by ten years of advances in the study of Lewy Body.

Which is where you come in, our global nomad community.

Bring on the love!