Living with Hereditary Spastic Paraplegia (HSP)
Vložit
- čas přidán 10. 09. 2024
- Hereditary spastic paraplegia (HSP) is a rare genetic disease that impacts neuronal firing capabilities, resulting in a disruption in walking gaits, digestion, cognition, and lifestyles.
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.
__________________________________________
If you'd like to learn more about HSP, check out this video: • Hereditary Spastic Par...
If you'd like to get in contact with Jason, head to: neuroguild.com...
__________________________________________
WHAT IS NEURO GUILD?
Neuro Guild is a hub for all who suffer from neurological impairments and disorders (e.g., HSP, motor neuron disease, cerebral palsy, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, etc.), to train, connect, participate in live events, courses, Q&As, and learn new skills.
If you'd like to learn more, head to: neuroguild.com
_______________________________________________
Thanks for watching 😎
_______________________________________________
#HSP #neurology #neurologicaldisorders #neurologicalimpairment #disability #disabilitypride
With me it started when I was 9 years old. I had shaking in the hands and could not do presentations. And around the age of 28, I had to start using mobility carts in shopping. Now, 38, I have trouble with side to side motions.
I understand exactly what he's saying about his everyday life.....
Proud of you mate for telling your story and bringing awareness to HSP. 🙌🏻👏🏻
What a very inspiring person. I was diagnosed with spastic paraparesis recently and I'm finding it extremely difficult. I'm nearly 40 and I have had this for around 10 years. Scuffing toes, limping, tripping, falling etc I could go on ....
Same. I have just started using a hiking pole along with FES equipment and I find it helps.
@@WobblyLance I'm not coping at all with this
@@vickilubetzky7227 Yeah, it can be difficult. It took a few years for me to be diagnosed; went through everything from "It is just how you walk" to cerebal palsy to the nerves in the spine being compressed before the National Neurological Hospital finally got my diagnosis.
FES can help with the toe drag/scuffing and I've found a walking pole better than a walking stick for balance and stability. Physio is the key, but of course it is different for everyone.
@@WobblyLance I had genetic testing and that came back with nothing, so my neurologist just said its idiopathic spastic paraparesis.
@@vickilubetzky7227 My thoughts are with you 👍🏻
I started to have real mobility issues around 26-30 and finally got diagnosed after a few years. Thanks for sharing your story.
Thank you for sharing your story again. I’ve followed you from when I watched your first video and it’s encouraged me to continue to work on building strength and flexibility. I can still do everything that I want at the gym or anyplace else. My only thing that’s becoming more difficult is getting up from the floor, but I’m just having to do it a different way than before. Jumping is also difficult for me, but I found. Jump rope without an actual rope, so I can just lift my heels. Bladder is also more of a problem for me too. And I’m feeling stiffness in my arms in front of my shoulders.
My ex husband’s mother and all her siblings have it(about 7 to 8 siblings).
His mother, brother, and uncle were diagnosed with SPG4/SPAST. So it was assumed that the rest of the siblings who could no longer walk normally have the same disease.
My ex didn’t get tested.
I don’t want to think that our kids may have it but it’s in their genes somehow
You are amazing im lucky to call you my friend ❤️
I’m 19 and I found out I had this in February
Good job Jason 👏👍
I would say signs started to show in 2011 but symptoms really started to up 2015-2016. Many people have told me my dad must not have given up that up.
Thanx for sharing this... I have HSP SPG8 the complicated form