Hereditary Spastic Paraplegia (HSP): The Rare Disease No One Talks About

Hereditary spastic paraplegia (HSP) is a rare genetic disease that impacts upon one's neuronal firing capabilities. Most notably, this impact affects the individual's walking gait, whilst also carrying over to other areas of their life like cognition, balance, digestion, and even other sensory impairment.

One of my clients by the name of Jason Jones woke up one morning with this disease taking over his body. Learn what that meant for him, how prevalent this disease is, and what Jason does (and other HSP individuals can do) to combat his new-found reality.

Pps. If you happen to learn and/or enjoy anything in this video, please help me gauge whether or not to keep making these types of videos. You can do this by hitting the like, commenting, sharing, and of course, subscribing.

Thank you!

Breakdown:
Part 1 - What is HSP? (0:59)
Part 2 - The Genetics of HSP (2:28)
Part 3 - Jason & HSP (4:53)
Part 4 - HSP Training (4:47)

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Got questions? Let me know in the comments below.

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[HaydenPerno]

If you stumble across this video, please let me know where you're from and what websites/services you have used to help you.


Thank you 🤝

[KieranMusicBrady]

I was diagnosed at the age of 7 with HSP and was told I would be in a wheelchair by the time I was 12 but now I'm 21 and I'm climbing mountains, working out daily and have a super physically demanding job which requires a lot of balance too, I'm hella thankful for what type of person I am due to Hsp, I let it drive me towards being better than anyone expected I could be, hope everyone else who has it doesn't let it hold them back

[SHMB]

Excellent video. I believe the disorder is underdiagnosed. People don't know enough about it.

[rubystevens]

I started experiencing symptoms at the age of 14 and only received my official diagnosis of complex HSP (affecting both arms and legs as well as my torso) + generized dystonia in January of this year at 20 years old and am now in a wheelchair about 90% of the time. i enjoy learning about peoples experience with it as i find it so fascinating to see how even people with the same mutation can so vastly different in their experience with HSP. I hope that there will be more research about this for other people and families who experience HSP

[baobism]

Great video and really inspiring to hear Jason’s story with HSP. Just a small correction, it’s actually an upper motor neurone, not a lower motor neurone, disease that leads to spasticity and weakness.

[tvetsch]

Thanks a lot for this video. I got diagnosed with HSP SPG4 since 2 months (finally I have a name).
But I'm not planning to let anything go. Still doing a lot of sports (running, swimming, cycling, climbing etc.).
I'm happy to see that there are so many people fighting and succeeding against HSTP! Keep on working.

[Truthsetsyoufree]

Hi Hayden, thanks for the video, I also have HSP (have had symptoms for 10 years) and now at age 23 still climb mountains, play basketball and ultimate frisbee. Struggles are different every day but working out, hydration and some good food has really helped!

[katlinquinton]

Thank you for sharing this! I have been diagnosed with HSP since I was 5! They originally diagnosed me (and my father) with CP, but something told my mother that was not right. Anyways, there’s not a lot of information out there about it and in my older years trying to learn about my own condition has been challenging. Thank YOU!

[graemeo]

This is a great video and I am very happy for Jason in that he can continue to exercise. Unfortunately not everyone with HSP has that luxury and one of the big symptoms of HSP is fatigue. Struggling with that is the hardest part for a lot of people.

[chrissweet]

Family is filled with HSP. Just starting out with my diagnosis. Thank you for this incredibly informative video!!

Hearing Jason's moment of realization of Jason seeing his reflection really strikes home with me!

[steviechat]

As a fellow sufferer, it's reassuring to know the exercises l do are in line with what has been suggested. Thank you.

[usddc]

Thanks to the video information provided by Mr., we are the HSP patient group in Taiwan. Thank you for providing the latest information about HSP. Welcome everyone to come to Taiwan and discuss HSP further and offer my best wishes.

[mlthewi]

Thank you for this brief, informative, and hopeful video.

[bensalmond]

Great video. I saw a patient with this the other day and came here to learn more. Jason is inspiring.

[max_rove]

My father suffers from this. It has worsened over the years. I wish there was a treatment for it...
Thank you for sharing this inspirational video.

[swatiupadhyaya]

Hi Hayden, I would like to suggest a change to one of your slides... in the recap section at 4:33 it says: HSP is a rare disease that affects lower motor neurons. This is not generally true, the usual pattern of involvement is in an "upper motor neuron" fashion. SPG4 mutations in particular usually present as UMN disease. Otherwise, fantastic video and well done Jason! He is a real inspiration!

[ticktock]

Great video!

I was diagnosed with Ataxic Paraplegia prior to anyone knowing much about HSP back in 1981. 20 years later I was put in touch with a neurogeneticist via a friend who worked with as a clinical neuro nurse in a prior life. Unfortunately the intervening years caused a lot of damage to my back and shoulders as I was using them to swing my hips over to walk. Spent years in neurophysio learning to stand from sitting and walking properly.

One thing that's worth mentioning is as it is a degenerative/progressive condition when balance and the ability to walk well goes get into a hydrotherapy pool for walking and stretching exercises. I've also found swimming in a heated pool helps to maintain physical activity. These days if I'm walking more than 100m I'll use a wheelchair. I spent a long time loosing contact with friends and family through an inability to be involved in social events or even something as simple as Christmas shopping with my daughter. The chair has given me a level of independence I didn't have previously. When you find your not doing the things you once did don't hesitate to make the change. Just had hand controls put into a new car as my HSP results in a lot of spasming, everything from tiny muscle spasms you can hardly see to rather violent movements that have now left me with chronic pain in my knees and muscles.

Good to see the video reinforces working your core and other muscle groups for balance. It's all imperative to managing HSP and maintaining a social and 'normal' life. It's worth talking to your trainer or physio about how you can integrate some exercises into everyday life. I'd have hours of nothing but 'maintenance' if I did all my exercises on their own. So I read on the floor while doing some stretching, and stretch while waiting for the kettle to boil or toaster to pop.

If you ever do a follow up to this would be interested to hear about how others manage side effects for antispasmodic and neuropathic pain medications. That's been one of the significant difficulties for me personally. There's also the psychological side to manage as well. Loosing the ability to do things we enjoy or that make up 'who we are' can be a difficult thing. So a well grounded support network and health professionals around can help ease the times we're frustrated at loosing 'one more thing'.

Thanks for the video and best of luck with the future Jason!

[quality]

Thank you very much for this video. It was very easy to understand and informative. I'm 53 and have suffered with the effects of HSP since I was 5. Did not find out what I had till I was 46. I saw the video in one of the support groups on Facebook and I also shared it on my profile. Thank you again and keep up the great work. Michael Hughes

[justinlea]

Just now checking this video, I myself have HSP and it makes my one true love of drumming so frustrating, thank you for this

[chrisglidden]

This gives me a lot of hope. I have not yet been diagnosed by a doctor that I did inherit the family hsp. But I already at the age of 24 have so much tension in my legs to my toes, specifically on my left leg. You can tell I stumble on my life side the most, my shoes have more wear markings on the toes. By my grandma mid 50s she was wheelchair and Walker bound. My father, can barely walk now in his late 40s but he (another ispiration) keeps pushing. This gives me hope that with exercise and guidance by those years I'll still be a to walk with my future grankids