In the Spotlight: Karen Lohr

Welcome to another Faces of NorCal SCI, where we highlight the incredible individuals who make up our vibrant community! This time, we are thrilled to feature Karen Lohr. Karen is an active, adventuring member of our community who lives with a C5/C6 incomplete spinal cord injury. From white-water rafting to hitting the open water in a sailboat, she is always up for trying new things and jumping right into local activities.

We sat down to chat with Karen about her journey, everyday hacks, and how she stays active.

Karen, to kick things off, can you tell us a bit about your background and what led to your spinal cord injury?

In 2008 I started having neuropathy and muscle weakness / foot drop in my legs. I used crutches and leg braces for a year or so. I did nerve damage in both elbows and wrists and switched to using a manual chair after nerve surgery. At the time, neurologists thought I was presenting with multiple sclerosis or something similar. In January 2012, I woke up with extreme neck pain and, as the day progressed, weakness in my arms and hands. Long story short: 89 days in a skilled nursing facility, 4 weeks in acute neuro rehab, and several neurologists later, I was told the MRI report back in January showed C5/6 had herniated and was compressing my spinal cord. The neurosurgeon said there's no way to know for sure, but most likely I had a mild disc herniation back in 2008 and it just slowly got worse over time. No one knows what caused the full cord compression in 2012.

It has been wonderful getting to know you! How did you end up discovering NorCal SCI, and how have you been involved with our community?

I went on a river rafting trip in June in Sacramento and brought a co-worker with me. I recently received a Road to Recovery grant for 2 FreeWheels (one for my main Quickie Nitrum chair, and one for my backup TiLite chair that has an angle-adjustable footplate) to allow me to check out state parks, festivals/county fairs, and most importantly run my service dog in Oakland and at Lake Merritt. I also received quite a bit of workout equipment from Handi Accessories, a company that makes gripping aids and workout equipment for people with limited hand dexterity. I also attended the sailing clinic at Lake Washington that was advertised by NorCal SCI but sponsored by Challenged Athletes Foundation.

You have one of the most action-packed schedules I've ever seen! When you aren't managing life with an SCI, what does your world look like?

I played wheelchair rugby from 2016–2020 and now play wheelchair rugby with BORP in Berkeley since 2024; I am also on the women's development team, Steel Roses (they are a new team this coming season under USWRA). I've traveled to Paris twice for a women's wheelchair rugby tournament—in 2017 and again in 2024 on a team made up of women from the USA. I've lived in Connecticut, Arizona, and now the Bay Area post-injuries, and I have surfed with AmpSurf New England and can't wait to check out AmpSurf in Pismo Beach. I am a certified scuba diver, did adaptive rowing/crew for many years, kayak with BORP, have done handcycling, water skiing, downhill skiing, swimming, and sailing with BAADS in San Francisco. I am also on my second service dog, my current dog being from Canine Companions Northeast Region in Long Island, NY. I also moved to the Bay Area for a job at UC Berkeley. I work in Housing Disability Accommodations, reviewing medical documentation for over 2,300 students with housing accommodations and over 250 approved animals living in campus housing.

With all that adaptive sports travel under your belt, do you have any cool travel milestones or stories people might be surprised to learn?

I have been to 49 of the 50 US states... Hawaii is the last one I need to visit.

Hawaii as #50 sounds like the ultimate trip! When you do get a chance to slow down, what does your idea of a perfect day look like?

Wake up, take my service dog for a run using my power assist at Lake Merritt, hang out in the office with co-workers, and come home to use my new gym membership at the YMCA in Oakland to either work out or swim. On the weekends, enjoy trying new adaptive sports and catching up with friends.

Finding smart ways to stay independent makes those daily routines so much smoother. What are some of your absolute favorite tools or clever tricks that make day-to-day life easier?

My soon-to-own FreeWheels thanks to the RtoR grant. Also the SmartDrive and new Empulse R90 rear-mount power assists I got through my insurance company. Also, I live in a non-accessible studio with full-size laundry machines that are stacked. I use 24" mesh laundry bags for all small items and an "extendable teacher's stylus" from Amazon to press the power and start buttons on my dryer. My dryer stays set at 55 minutes, so I just needed a way to power it on and press start.

Using an extendable stylus for the laundry is brilliant! Looking at the bigger picture, what is one myth or common misunderstanding about living with a spinal cord injury that you wish more people understood?

Not all people with SCI have complete paralysis with no movement and no sensation. Many chair users can stand and even take steps; don't assume someone is faking if they stand up or can move their legs some. Also, someone may be an incomplete quadriplegic and can push a manual chair but still have paralyzed triceps or poor hand dexterity—they are a quadriplegic, not a paraplegic.

That is such an important point to highlight. Looking back at everything you've taken on since your injury, what is a personal achievement or milestone that stands out as a point of pride?

Moving cross-country 3 times for new jobs or adaptive sports. In 2011 I moved from AZ to CT because I was playing sled hockey on the USA women's sled hockey team and took a job in CT to be closer to sled hockey teams. In 2023, I moved back to a different part of AZ for a mid-level manager position in housing at a university. In 2024, I moved once again to UC Berkeley for my current job.

Three cross-country moves is incredible! When you finally do get a moment to put your feet up, what are you currently watching or listening to?

The Pitt on Hulu

Who has been a key mentor or guide in your life who really helped shape your path along the way?

My first supervisor, Gretchen from Northern Arizona University, stood by me when I first became disabled and learned alongside me. She introduced me to Jazzercise to stay active, and as a swim coach, she also encouraged me to get involved in swimming, even though it took me 20 years to do so.

Shoutout to Gretchen! To wrap up our chat today, what is one last piece of advice or encouragement you’d love to leave with our NorCal SCI family?

I recommend a service dog to help you live life independently.

If you, or someone you know, would like to be featured here in the Faces of NorCal SCI, let us know!