Hereditary spastic paraplegia (HSP) is a rare, degenerative neurological genetic disease that impacts the nervous system. Primarily disrupting the upper motor neurons, HSP alters firing capabilities and signals, resulting in a disruption in walking gaits, vision, cognition, digestion, and lifestyles.
Currently, there are more than 80 different subtypes of HSP that are passed down generationally (hereditary). Some can lead to minor stiffness (spasticity) in the lower limbs, leading to trips and falls. Others can lead to the individual developing complete paralysis (paraplegia).
While every individual experiences different symptoms, with some severe and others less so, Jason Jones is mostly affected in the lower limbs. This means his walking, posture, balance, strength, and flexibility are all greatly impacted. Because of this, he spends a good portion of his daily life in a wheelchair or using a walking cane.
In this interview, get an insight into what it’s like living with HSP, including the struggles, the triumphs, and his daily schedule.
So awesome thank you for sharing this beautiful video
Jason nailed this interview. Glad you enjoyed it. And welcome to Neuro Guild, Karly!
I also have HSP I have known Jason a few years on the HSP Facebook page there are now a few hundred on the web site. We help each other with advice
Often have meet up there was one in Brisbane a few weeks ago about 30 HSP’s were there of all ages
I also have an exercise and stretching routine I do this most days. I bought a Pilates Reformer a few years ago Its been a fantastic help. I have 3 exercise that I do most days. They strengthen the core body.
I can also do a calf muscle and Hamstring stretch
My progression has been slow due to my exercise routine .
My HSP, SPG4 started to show in my late 60s I am now 71, I have to use a walker all the time and an Electric Scooter when the distance is too far
I also used to run I did the City to Surf in Sydney in the late 90s
There was some trials on a drug called Noscapine. this is now on hold due to lack of Government Funding and finding cure for Covid19. I was part of this trail. I now buy this drug myself from overseas
I have deep tissue massage every 2 weeks to help loosen up my leg and lower body muscles
All my friends know I have HSP i don’t try to hide it
My wife and kids have been a great help I also have good and bad days
when the legs and feet are sore I do soft stretching for for this, a massage gun also helps
I learnt early on the doctors cant help anyone with HSP We are on our own the facebook page is great to advice and catching up