Hereditary Spastic Paraplegia

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.

• 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

• 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

• 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

For Nancy and her husband, Wally, this journey was more than just a vacation—it was their first time leaving the East Coast and the beginning of a new adventure. Nancy has been navigating progressive mobility challenges, so we knew this trip would require a thoughtful balance of accessibility, rest, and awe-inspiring beauty.

To help them feel confident and supported from the start, we arranged a private tour through Tenaya Lodge, allowing them to explore the park with a guide who catered the experience entirely to their pace and interests. We also rented a durable scooter for Nancy, giving her the freedom to fully participate in the experience without draining her energy.

Before their time in Yosemite, they spent a few extra days in San Francisco, seeing the sights, trying new food, and savoring the freedom that travel brings. This wasn’t just about seeing new places—it was a chance for Nancy and Wally to reconnect after a difficult season, to breathe deeply in nature, and to prove to themselves that even with challenges, new adventures are still possible.

Being Positioned created a 7-day itinerary for Nancy to eat, explore, and sightsee in beautiful San Francisco + Yosemite.

We had an unbelievable and unforgettable trip to San Francisco and Yosemite national Park. Our first day in San Francisco, we had a bus tour of the city, investigating all the neighborhoods and hearing about the history. Growing up in New England we always heard about the colonies and revolutionary war when we went to school and had very little information about the history of the West. After the bus tour, we decided to go back to Golden Gate Park and spent the afternoon in the botanical garden, which was wonderful.

On our transition day from San Francisco to Yosemite, we started the drive with a visit to Muir Woods Park. I will never forget the breathtaking trees and the water running in the creeks through the park. Being Positioned rented a scooter for me to use and I was able to go everywhere in the park without having to worry about getting tired, back pain or the risk of falls. I was able to enjoy every second of our time in the park.

We drove to the Tenaya Lodge, which was just 10 or 15 minutes from the entrance gate. Meals were very easy and they offered s’mores at the campfire every night! During our first full day at Yosemite, we had a private tour stopping at all of the major sites in the park. Our tour guide was fantastic – she knew everything about the trees, the flowers, the rocks, and the history. She had an answer for just about everything we asked! We put the scooter in the back of the car and at every stopping point in the park, we took it out so that I could enjoy the whole experience of Yosemite without any risks. Our second day at Yosemite, we were able to go back to the park on our own. We spent a lot of time at Yosemite Village and met the goal of going to the Ansel Adams gallery.

San Francisco Big Bus Tour • Muir Woods • Private Day Tour of Yosemite • Bridalveil + Yosemite Falls, • Glacier Point • Ansel Adam’s Gallery • San Luis National Wildlife Refuge

Having the opportunity to go on this journey was an incredible break from that repetitive thinking and focus on my disability that clouds every day. I had seven days with such wonderful experiences that my disability and health concerns were not front in my head. I hope to remember to “take a break” from my usual anxious and worried focus and be grateful for the experiences I can have and the people around me.

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.