Nancy
Hereditary Spastic Paraplegia
Destination: San Francisco + Yosemite
Travel Year: 2025
My Story
My name is Nancy and I have Hereditary Spastic Paraplegia (HSP)- a disease that is genetically passed and is characterized by progressive development of spasticity/muscle tightness of the lower body and problems with mobility. My father also had HSP though at the time we did not know what it was and that his problems could be inherited. I had an awareness that my walking felt different as early as 2016. Full of stubbornness and denial, I trudged through the next few years frustrated with my walking but not really knowing what was going on.
In 2018, I was on a walking trail next to the river and had terrible difficulty making a 1 ½ mile walk. I also had frustrations with trying to lift my foot from the ground into the car. At that point, I talked my doctor. When she found that my lower body reflexes were hyperactive, she referred me to a neurologist. The process to be diagnosed was very intensive with genetic testing, all kinds of scans, bladder tests and EMG’s.
I started using a cane out of the house in 2018; in 2022, I got braces for my feet and ankles; in 2023 I started using forearm crutches out of the house and my cane inside; in 2025 I am trying a knee brace and am thinking about a scooter for long distances. HSP has left me managing frustrating mobility, the risk of falls, and constantly adapting my daily routines. I have had several falls, but so far have gotten away without breaking any bones! The worst fall was trying to add seeds to the birdfeeder! With changes in muscle tone, HSP has also affected my posture which gives me back pain. I have had to cut back to less than half time at work which is very challenging.
“Ironically, for most of my professional career, I worked as an Occupational Therapist in neuro-rehabilitation programs. I worked with people who had survived strokes, brain injuries and other neurological conditions. My patients had the same disabilities in mobility and movement that I am developing as HSP progresses for me. At times I think it has been an outstanding gift that I chose a career that gave me the experience in dealing with the issues that I have to struggle with everyday now with HSP. But it’s also a heavy load to know what I will likely have to deal with in the future due to the impacts and progressive nature of the disease. “
My Health
Daily Challenges
- Mobility: I’m using a cane in my house but have to be thoughtful of each step because things can get unsteady in a blink; I use forearm crutches out of the house which can be taxing on my upper body
- Community access: The world is supposed to be accessible to people with impaired mobility but I am easily frustrated with stairs, getting through doors, and the interiors of shopping and public settings
- I am dependent on catheters; it is a challenge to keep everything clean in public bathrooms
Ongoing Health Issues
- HSP affects the muscle tone of my legs and also affects my bladder; I have to use catheters and be very cautious about UTIs; using catheters at home is not bad but public restrooms are a huge challenge
- The spasticity gives me back pain and affects my endurance
Major Procedures
- While getting diagnosed, I had to have a heavy batch of scans- MRI, CT etc; EMGs
- I get Botox injections in the large muscle groups of my legs every three months to manage the spasticity/tightness
Each person diagnosed with HSP experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.
To learn more about Rare Genetic Disorders, click below.
