If you stumble across this video, please let me know where you're from and what websites/services you have used to help you. Also, if you’d like to watch an interview with Jason, head here: th-cam.com/video/r4B3Ehyyql4/w-d-xo.html Thank you 🤝
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
@@mahmoudsaber5177 It may be an option to seek out the HSP genetic test to clarify what you have. A quick Google can point you in the direction to attain this
I have HSP and recently discovered I had a rare gene being SPG79A. So not only do I have HSP, but ataxia as well. Everyday is a struggle but I am still walking with the aid of my rollator and I’m not giving up! I have had this disease for 17 years now and I’m almost 67- years-old.
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
My father has had issues with walking since 2009… many neuro and studies done with no results. Today he seen a neurologist that specializes in muscle disorders is testing my father now. Starting with genetic testing. We are from PR/PA/DE
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.
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.
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!
@@HaydenPerno lower limb control impairment and muscle stiffness in lower limbs. It is the pure form, I have two brothers with it as well and my father
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!
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.
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!
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
M Hughes Thanks Michael, I'm glad to hear it was informative. It's hard to know if you put enough info into these types of videos. And thanks for sharing it. Have a good day 👍
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
Hi Crys Glidden This year I’ve had HSP for 20 years now and I’ve been training now since July 2012 with my trainer Hayden (the one that made the video clip) and before I started I felt I was unfit with how I walk as it was a big effort. With me training I just don’t focus on my legs. I do legs, core and my upper half with cardio work too as it helps me do things that I would have struggled with in a big way if I didn’t train my whole body. I have been asked by many what exercises should I do on my legs and then I think that the legs maybe the problem but you don’t get fit with your breathing and a good heart beat that recovers quicker from the training that gets done. I walk and also use a wheelchair to get around. I use the wheelchair as I don’t want to fall over and hurt myself in anyway as this will make it harder to live a comfortable life. So look after yourself and do things that you feel comfortable doing and what you want to do in your life that makes you feel happy in yourself.
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.
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!
Thank you for putting this together. I have SPG 4, both brothers and mother. It's really tough slowly losing the ability to do things I love. Powerlifting at gym and hiking. It wouldn't be as bad if more people knew about it and awareness.
100% man. That is exactly what Jason says. More and more people are learning about this disease. The amount of people who have watched this video (and commented) shows just how much it is widespread and definitely not as "rare" as it is touted to be. How many days do you lift and hike? And what kind of exercises do you actually do?
I tried to talk to my doctor in my early 20's. At the time, my Grandfather & mother both were diagnosed with this. The doctor laughed at me, told me to loose 100 pounds & basically called me a addict thinking I just wanted pain medication. It was really disheartening & I gave up and just lived with my syntoms for the last 6-7 years, but my Uncle was also recently diagnosed & my syntoms have gotten worse. So next week I have an appointment with my doctor (A different doctor who I've actually grown to trust) to discuss this with her. I really hope I can get some help. Thank you for this video.
All my kids carry the gene for HSP. It runs through their father’ maternal blood line. Their grandma and most of her siblings, I think 7 of 9 have been affected by HSP in varying degrees with most of the affected ones losing their ability to walk altogether. My children’s uncle has lost his ability to walk normally by the time he was in his mid 30s. I am at loss for words on what to feel about this. I hope my kids live healthy lives as long as possible until they grow very old before this cruel diseases manifests
thanks for the vid, all my family got HSP in their teens, I thought it had missed me, but then in my 30's I was under extreme stress in my job, which brought it out for me. I use a wheelchair to prevent tripping over, this had made me put on weight, which is also unhelpful with HSP.
That’s very interesting. Is that what you were told by the specialists (in regards to the stress activating it)? Also, do you engage in any exercise at all?
Hi Lori This is me finally on TH-cam and I have just created my account on here as Hayden asked me to have a look at the comments on this link. I’ve also put up my first speech up on here with the thanks to Hayden for asking me to do a talk/speech on the awards night for where I train at. How’s the Potato Pants going?
Wonderful explanation of HSP and everyone who suffers with HSP should have their Family and Friends see and listen to this. Thanks Jason you are an inspiration :)
This was so wonderfully, and empathetically done, thank you with all my heart! When in high school, my Brother would tease his now wife about how klutzy she was. They are now 44 and she just received the diagnosis of HSP-4. She’s devastated, can’t play with her two little girls anymore, and she also now owes the hospital that diagnosed her $40,000. Because America. Anyway, thank you again for such a concise, clear, but positive video! 🤍🙏🕊
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!
All the best Chris. Feel free to reach out to Jason (his details are in the description of this video) if you would like to talk to anyone first hand that has been through it
Hayden...thank you very much for this informative and encouraging video. I was diagnosed with HSP last year....but have had the symptoms since 2013....I'm 55 so it makes it more aggressive I was told. My doctor believes that my uncles on my mother's side (died before I met them) had HSP instead of MS....which is what was believed by the family. I really respect Jason's courage to move forward....I can truly understand his struggle!!
You’re welcome Stephen. Are you engaging in any kind of exercise protocol? Interesting about the misdiagnosis of your uncle. I wonder how many of those happen/ed. Thank you for sharing your story and all the best
@@HaydenPerno Great question....and no I don't. I have been finding great videos to help....but an actual protocol I don't have....any suggestions? and thank you for responding
It’s hard to say exactly what you can and should do, but I would recommend firstly seeking out a specialist. But if that’s not possible, I would look at the basics and try to get moving as best you can with those. So, squats and hip thrusts and push-ups and core work (e.g., swiss ball, rollouts). I have talked to Jason recently about us putting a complete workout tutorial together. I should get onto that!
Love the video Hayden, very informative. My daughter has complex HSP, we already know Jason through a support group. Thanks for making the video, I'll be sharing it on my daughters page to try to help educate people.
Thank you for this. My grandmother was diagnosed as having MS for 20 years before she was recently diagnosed as having complex HSP, and her mother was diagnosed at the same time as well. My mother has began to show some early signs of hsp, and not knowing much about what to expect besides my grandmothers severe case, this has given me a lot of hope
Thank you for sharing your story, Elijah. How old did your mother start showing signs and do you know if anyone else (siblings, cousins, etc.) who may have the gene? There is always hope. Jason and every single person who has commented on this video shows that. It makes me happy that a video like this can bring people together. I hope one day stem cells or something even better may help everyone affected
I greatly applaud the determination of this young man. I myself am an avid bowler, and for almost ten years I've had to deliver the ball just by standing at the foul line and releasing it with a half-step. But I do it thrice a week! It is my upper body physical workout and is a very social one. Again, I admire everyone involved here.
Cool video! I like how you give such a comprehensive overview, can’t wait to check out your other videos. One thing though...HSP is an upper motor neuron disease (causing muscle spasticity), and not LMN (muscle flaccidity).
This is superb! (My husband has been diagnosed with HSP.) Thank you so much for sharing it - also thanks to all the people who have added useful advice, which is incredible. This has confirmed a lot of the strategies I've been nagging him about (strength training, swimming etc). Thanks again!
This is me. I was born with sle I have about 9 other auto immune disorders. Told I would be in a chair three yrs ago .just got home from hospital last week. A doc diagnosed hsp 2016 now today I woke unable to walk on my own my wheelchair is now my world . Thanks for this ps I am 48 nowp.ss I live in Sydney Australia
Molly Mayor Thanks for sharing your story Molly. Don't let the diagnosis bring you down, it's definitely not the end. I encourage you to reach out to Jason (his Instagram is in the description) seeings as though you live so close
Hayden Perno I'll have to get me an Instagram lol never used it but I'm sure I'll figure it out. For yrs doctors have said I'm on borrowed time so this wasn't a shock. I guess that little denial has gotten me through. I'd love to catch up. Not many of us out there . Thank you so very much for looking out for your friend and sharing his story. Fantastic have a wonderful day xoxo
Molly Mayor Hi Molly Thanks for sharing your story here. Be strong and enjoy your life to how you can now. We all have our good and bad days from one week to the next. I’m from the Wollongong/Shellharbour area. We are not that far if you want to meet and chat one day. I also have a like page on Facebook which is ‘My Journey with HSP’ and you can write to me there if you don’t have Instagram. Thanks again Molly
jason jones hi Jason I'd love to catch up. I don't drive and thankfully my new electric chair will be here in a few weeks. Long needed. I have two amazing grandsons 18 months and 3 months. When my first grandson started walking and I caught it on tape well I walk like he did. Infact he walks better then I do now lol. I live alone and I have wonderful carers. I joined Instagram and I followed you on FB . So nice to meet someone who understands, anyway let's work this out maybe even face time or something. Anyway great to chat thank you so very much for sharing your story xoxox
That’s so cool about your grandsons and you getting a new scooter soon. FaceTime is ok with me too. I have seen a lot of people with HSP that didn’t know anybody else that has it and other that keep quiet as there partner doesn’t want others to know what they have. I’m doing this to motivate people with and without a disability and teach people about HSP. I know I have educated heaps but there is a lot more out there too.
Thank you for this video. I am 64 and was recently diagnosed with hereditary spastic paraplegia by my neurologist, after considering symptoms and family history. My first born child passed at the age of 26 from affects of what my neurologist believes was undiagnosed hereditary spastic paraplegia. She has not yet begun performing any genetic testing. I also have a history of brain scarring from a right hemisphere hemorrhagic stroke I suffered in 2015, which left me temporarily paralyzed on the left, neck down. I have since recovered my ability to use my arm and leg on the left, although I do still experience residual weakness as well as frequent and sometimes severe muscle spasms. I also experience hyperactive reflexes in lower limbs. Definitely more interested in addressing the issue through nutrition & movement than pharmaceuticals. Very interested in any suggested resources along those lines. I, too, am a fighter. I've long planned to make it to 100, & I don't intend to let this change that. Thank you again✌️💖☀️
I suffered with HSP4 for 40 years and was genetically diagnosed a month before my 41st birthday last week. I've had a pretty tough and confusing life so far and it's not getting much easier.
Thanks for the video, I have been living with HSP for 7 years. I have the complex but I’m 38 doing all I can do to not end up in the wheelchair. I try everyday to run. One day I will and it will be the one of the happiest days of my life..
@@HaydenPerno I do ,I’m trying to work on my balance as well. So I’m doing upper and lower. But to run around the bases at the baseball field with my boys again is what I’m really striving for.. any exercise you recommend I will definitely try.
You can run?? Wow that's awesome. I struggle to stay upright walking across an open room without a cane. I use 2 canes at the moment for stability. How do you manage your HSP?
I was diagnosed when I was 14. I was born with it but they didn't know what it was until I was 14. I also have learning challeges with it. They told my parents that I may never be able to go to college but guess what? I'm in college studying communications with a concentration in both video and audio production and I just got a job at Target. I'm 21 years old. I don't drive yet but I am hoping someday I will be able to drive. Everything is a little bit better for me now since I started seeing a homeopath. I feel so much better I have not fallen in 2 years. I just gotta be positive with my disease.
Maddy, this was so good to read. You have an amazing attitude and I am so happy you are taking your disease in full swing and actually rolling with the punch of it. Jason drives everyday and he has no real issue with it, and I hope one day you get to sit behind the wheel! Thank you so much for sharing your story
@@HaydenPerno Thank you. I used to not be able to feel temperature on my feet but ever since I went gluten and dairy free and stopped eating fast food and drinking soda things have been better for me. My homeopath really makes me feel better. Now when I go swimming I can feel if the water is too hot or too cold on my feet. I used to have to actually have to get in the pool to see if it was too hot or too cold but I am so glad that I can feel with my feet now.
Ik ben ook de enige in mijn familie!! Mijn neuroloog heeft mij verteld dat je als embryo in de buik van je mama zelf ook een fout in je dna kunt ontwikkelen. Het is gewoon dikke pech hebben.... niemand snapt je en voelt je pijn. Hier in Nederland ben ik 8 jaar voor psychisch gestoord verklaard, december 2022 eindelijk diagnose gekregen
I am currently undergoing genetic testing for this disorder. But it definitely fits me to a T. It’s nice to see other people who’ve gone along this mystery path with me.
Hi Kate I’ve final got my own TH-cam account and have uploaded my first ever speech of HSP and some things that has happened in my life with HSP. Be strong and live each day by day as we all suffer differently.
Ik heb als embryo zelf een fout in mijn spast gen ontwikkeld. Ik kon laat lopen en liep raar, ik heb nooit kunnen rennen. In mijn tiener jaren begonnen de krampen in mn kuiten en later in mijn hele benen. Nu in minder dan een halfjaar moeite met praten, slikken, last en pijn van mijn handen. Ik val zomaar om wanneer ik ga staan. Kramp in mijn tong en handen in de nacht. Binnenkort start ik met baclofen als eigenlijk laatste hulpmiddel voor spierspanning en spaspmen etc. Ik ben nu 17
Hello Tyler. Sorry to hear about that man. I know Jason has these a lot too. And I know they suck. Sometimes what he finds helpful is foam rolling and activating the muscles in them as much as possible. For foam rolling the legs, please check out th-cam.com/video/ipVbSFLViiA/w-d-xo.html and th-cam.com/video/qNrVAhmMuSY/w-d-xo.html. For activation of the muscles, sometimes it can be as simple as tensing the muscles in them for 10-30 seconds, 3-4 times, and repeated a few times throughout the day. I hope this helps. Let me know how you go
How do I save this video. This is the best descriptive of my HSP that I have seen. Just seeing this, I have to call my neurologist! Never have I ever been told I have complex HSP. But it looks like I do.
I was diagnosed around two from walking on my toes.Im Pretty stubborn and that has helped a lot and mostly my faith.Im 56 now and my hamstrings feel like their in a vice but not ready for a wheel chair.Ive never met anyone else with it so this is nice to know I’m not alone😀
If you ever come to Australia, you'd have to meet up with Jase. He knows several people living hear him with HSP. One day you all should organise a big function/seminar
In my whole paternal and maternal family m only person with this disorder(HSP) I'm 23 years old and during my early life i even didn't notice that m suffering with such disorder...I used to run and play but frequently i fell while walking or running.. Whenever somebody says how do u walk? I always wondered! Is there anything strange with me? Then i saw my self in mirror while walking. It was shocking for me. We consulted neurosurgeon at age of 16 and i was on medication for 4 years but no appreciatable result had seen. Then i quit medication. Recently i again consulted with neurophysician and he told that i have HSP. I am on medication again. Hence there is no proper treatment of HSP but Dr said that Medicines provide support indirectly. I have poor balance. At home I can walk on my own,but outside from home i hold my sibling's hand for walk bcz of low confidence and poor balance. I hope for the best in future❤
I was born with HSP, over the years it has done nothing but progress to the point that I can hardly do anything for myself with out some help. It effected my legs from the beginning but now is attacking other parts of my body like my intestines, lungs and arms. I will continue to fight it and at the same time; I will continue to go through it in a positive manner. I have found humor in wheelchair jokes. This is my coping mechanism. I was 10 at the time that I was diagnosed by Walter Reed hospital back in 1978. I literally became the human Guinea pig the week and half while I was there.
Thank you for sharing your story, Redinna. I’m sorry to hear that you have battled HSP since birth. That would be difficult-especially since the late 60s. I wish you all the best and I will pass this story onto my client. Cheers
We have HSP on my mom's side of the family. My mom and the family didn't know what it was called, but called it "the crippling disease". It wasn't until several years ago when she was diagnosed that we knew what it was called. From what I've read on symptoms, I think I may have it. Time will tell. Does or did anyone have issues with toe walking? I toe walk only on one foot, and am wondering if this could be a symptom, I haven't really gotten a clear answer with research.
Great video and by the way you are doing a great job with your HSP disease. I am from Germany, showing all symptoms of HSP since I turned 40. Had several problems with bladder and walking before but nobody had a clue what it might be. I am not genetic classified yet. Had some strange neurologists before. I am in a german support group for HSP. If you feel like you can contact me.
Danke for sharing your story, Markus. Sounds annoying about the strange neurologists. Will you be seeking out a proper diagnosis? I also definitely recommend contacting Jason: social media = @myjourneywithHSP
I started abnormally waling at the age of 4 and as I went to doctor after doctor and underwent multiple test I was finally diagnosed with HSP at 16 years old I used to not use anything to help me walk when I was in elementary school as I got older and moved on to middle school I started needing to use a walker to help me get to post A and point B. I currently still struggle with trying to process that I have it but hopefully one day their will be a cure but I will not give up which is why I want to be a Medical laboratory technologist and do research not only on HSP because it is so under diagnosed but also things like cancer and other rare diseases I want to help people in hopefully giving them the answers to their frustration like me. Thank you for sharing this video.
Thank you so much for sharing your story, Mariel. You seem like a very positive person taking it all head-on. I wish you all the best with pursuing your medical lab technologist goal. And look forward to reading the books you publish one day on what you learn and discover!
thank you for this. i was diagnosed with hsp aged 49. they believe it to be from my mums wonderful genes. i have steadily gotten worse during lock down with everything closed. i walk so far n then that's it my legs just stop. i get all the tight hamstrings where i end up walking on my tip toes. sadly i also suffer joint hypermobility syndrome too n my worse area is my lower limbs. so between the 2 im having a bad time. thank you for showing me what stretching etc can do. im going to join local gym where the PT won PT of the year 3 yrs in a row for the UK in the hope him and his team can devise a program for me to regain muscle mass n strength. i can cope with pain n bladder issues that come with both conditions but i refuse to accept im wheel chair bound. yes like most ive read ive fallen over alot etc but sometimes im not sure if this is HSD or HSP they intertwine in some symptoms. are there any uk fb grps/ grps i can to learn more. my gp n neurologist more or less say get on with it n take ur meds but thats not good enough. ive asked for physiotherapy n been told lets sort sleep first. feel like im being fobbed off. i had to leave work due to it or end up in a wheelchair. my wish is to regain strength in legs so i can work again n have a life. sorry for long essay but its first time ive seen something that actually gives me hope.
WWith me, it started when I was eleven in 1973, before there were CAT scans and MRIs. I did not have genetic testing until 2017. Until than, I was told I had idiopathic spastic diplegia. After the testing, HSP, even though no one on either side of my family had/has anything like this. As the years went by, I went from waddling when I walk to needing leg braces, canes in both hands and a walker. I have the Baclofen Pump and, in a coule of weeks, will get new leg braces that were recently put on the market. This disability wrecked my life. The monastery I belonged to paid for the Baclofen Pump to be put in me, but they though it was a cure, and cast me out when the physical thereapy and refill bills came in. I wish they would find a cure.
Thank you for sharing your story. I hope one day there is a cure, or, at the very least, technology that overrides the nervous systems malfunction. I wish you all the best for your new leg braces and the recovery following
Hey, i was diagnosed at the age of 3 with HSP. I had that rare disease from my Mother and she had from my grandfather and my grandfather got it from his mom. I have brother and simptoms of hsp we remarked when he was 15. My kind of HSP is more more expressed than my mom and grandfather. I have one questions, how big are chanche my children to have HSP? I think is more than 80% 😔...
I’m not sure exactly, but I believe passing on a gene like HSP is usually at least 50%. You are better off asking your physician, however. Thank you for sharing your story. It’s always interesting (and sad) to read everybody’s own take and experience with HSP. I hope one day stem cells or something else helps you all
Great video, thank you. It hopefully will help people understand better what is going on. I recognize the path he went trough, much respect how he handles it. I started tripping and falling down about 20 years ago, it took 10 years to find out what was wrong. I was also convinced that doing nothing will only make things worse, so i started exercising to keep myself mobile for as long as i could. About 3 years ago things went downhill fast, couldn’t step without sticks anymore and increasing the dose of medication didn’t help either. I now have a baclofen pump and use cdb oil, rest of medication i stopped. I go for stretching and hydro therapy on a daily base. Especially the hydro therapy works for me good. I still used to be able to ride my electric bike and walk with sticks up-to a couple of weeks ago. Since a year i am complaining about pain in neck, shoulders and wrists. Again lot of research, tests etc. Now the conclusion is, I put too much stress on my system by riding the bike and trying to walk. So now this is also gone unfortunately. I just want to warn to not overdo the exercise for strenght, my specialist tells me this caused the situation i’m in now and have to accept it. Luckily I have a lot of fun in the hydro therapy and this I can continue to do since it puts no extra stress on my system. I wish you all the best and keep up being positive with the way you’re dealing with hsp
Thanks so much for sharing your story Remco. It is an interesting point you make in regards to overdoing it. How much exercise were you doing specifically for this to be the situation? And what type was it?
It was not only the exercising, but more the total lifestyle. Work hard, play hard, party hard. The moment i couldn't walk normal amymore i started cycling and did around 300/350 km a week to train, not a good idea. When that was not possible anymore i got an electric bike and did about 3500 km a year. So that is also is finished now. Than one moment i got an serious infection in my intestines and had to stay in the hospital for a week. Doctors said to stay home for 4 weeks and rest but i got back to work and all after a couple of days. Than on one point my body said stop and since than all went downhill. So what i try to say is, when you are in our situation listen to your body. Our body has already work anough to keep us traight and in balance. I am 100% if i had listened to my specialist and lot of other people i would not be in this situation today. It will eventually happen, but not so soon i think. I now totaly changed my lifestyle, eat more healty, limit alcohol to a minimum etc. I do this now for 8 weeks and lost 8kg and feel much better, inhouse i don't use my rollator anymore and i can stand up longer again without everything going in a cramp after 10 minutes. I am not good in writing all down, but i hope my story can help people
SPG4 runs in my family. at 2:54 you say it occurs in late adulthood but at 5:47 you say his dad and brother both developed it in their 20s. I'm 25 and feel I have some of the symptoms.
From what I understood when writing that particular slide, "adulthood" begins in your 20s. Jason started to develop symptoms at 26. I'm sorry to hear that SPG4 runs in your family. What symptoms are you experiencing? And have you been diagnosed for carrying the gene?
my son affected hsp3A diagnosed 2years.now he is 2.5years old.we will do some excercise last 6month but angle titenes not reducing.pls share some excercese for my son
I need some help. My oldest daughter has been dealing with HSP complex type 11 since she was a preteen. The last year she went through an episode of wanting to die and yelling and screaming out at her staff. (I had to turn her and her brother over to a wonderful establishment as my back is breaking down after collapsing 2 levels in my neck). We found out this fall that both have HSP as listed above. My daughter is wheelchair and bed bound. It is hitting her bowels, hands, feet, legs, arms and now her brain. My son right behind her and now I am having symptoms since last January. She is back to screaming at staff and has started throwing her property at staff. I have read that this aliment can affect behaviors. What can I do for her? Is there anything people have done to help individuals being affected by HSP type 11 complex version?
Thanks for this informative video. I started experiencing systems of the condition a little more than two years ago, stiffness and severe walking problems, the strange thing is I can ride a bike, elliptical at the gym and rowing machine with little trouble. I am 63 now. The other possibility is nerve damage due to vitamin B12 deficiency. Best of luck to you and all!
Yes, by an experienced neurologist. She has me on baclofen and B12 supplement. Next steps, genetic testing and she is consulting with her colleagues on my case.I am doing daily workouts at the gym, elliptical for an hour and 200 pushups, almost never miss a day. Other than my walking I am in great shape. I loved to hike but that is now imposable, but I can at least mountain bike.
@@us3804 Thanks for asking. Yes still doing my fitness routine. I am in very good shape except my walking. My walking has not gotten worse, its the same as it was 3 years ago. I do have cramps, maybe two or three times a week, they don't last very long, maybe 1 or 2 minutes, Cramps go away when I standup. My suggestion, Cardio exercise almost everyday. Pushups and weight lifting if you have time. But cardio using legs is a must in my opinion. Do as much as you can with your legs. You need to maintain the range of motion of you legs. ( Of course check with an MD before starting an exercise program) One more thing, if you are overweight you should try and shed those extra pounds, your legs will thank you.
I have something that seems to be in this family of disease but have yet to find a dr who can determine it exactly. It sounds just like this, but its only my arms and I've had the problem since I was a kid (Now in my 40's). I had learned to live with it while I was young as it wasnt too bad but as I have aged its just got worse and worse and its now to the point I can bearely hold a pen/pencil and write for more than a minute or two before the muscles tight up, spasm, and sometimes lock up/dont respond properly and shoot pains up my arms and I only get relief when I curl my arms up in a wierd curl. Every dam dr Ive seen since a kid just shrug as if I'm making it up because they cant find anything in blood tests. Claiming it sounds like arthritis, while I have none of the other signs of arthritis or blood test results.
I would like to know the surgery Jason had and where would you go to find a Doctor that does it. My son was diagnosed and is struggling with walking. We are in Ohio. USA.
Hey Linda. The surgery was bilateral gastrocnemius tendon release surgery. We are in Australia (near Sydney), so I'm not sure what would be best in your area. But I'm sure there are options over there. Let me know if you have any more questions
Hello people here, I have seen so many comments where people have shared their experience with this disease My sister is also suffering with this disease She is 27 years old and her condition is not improving She walked on her toes and dragged her feet from an early age of 12 and was a bit slow in understanding things But from the last three four years her balance has decreased alot and she is getting slurry in her speech and urinary urgency has increased a lot She is some nights getting up in 3-4 times for washroom She falls a quite bit and takes support of walls and chairs Ordered a walker for here for going to washroom in nights Please guide me on how can I make her condition stable Thank you alot for the help in advance
@@HaydenPerno The SPG4 heterozygous is 0.54% avg frequency. Super damn rare. Spasticity, abnormal gait and weakness. Require a walker. My neurologist says my symptoms shouldn't have happened because there is no pathogenic variant, but I do have symptoms. The HSP panel is uncertain why.
I was told I had it, I'm not really sure if there's a test for it or not, my neurologist just observed me walking , it has gotten worse the past few years and I try to fight it. My dad has it really bad, he's 83, he can't walk , he has a scooter and wheelchair. I'm trying not to get that far.
There are gene tests that can clarify what you have. Google: HSP gene testing. As for fighting it, you may not be able to stop it completely, but you can definitely slow down the effects. Jason is a living example of this, and so are so many people who have commented on this video. If you remember, could you please come back here after you have received a genetic test? Thank you and I wish you all the best, Tandi
@@HaydenPerno thank you so much. As far as fighting it, I meant that was trying to keep from wheelchair or scooter. I know the time will come but I have it, it doesn't have me.
I was reading about lower cross syndrome and they seem to have similar affects in terms of tight/short muscles and weak muscles? just that lower cross syndrome isn’t a neurological condition
When I was 21 I started having symptoms but no could find out was was causing them when I turned 48 I started having trouble with my vision iam 50 now and now iam limping alot that's when they found out I have hsp 47 a neurologist finally discovered what I have also a DNA test found I won't give up but I do hate the tripping and losing balance
@@HaydenPerno I just started doing pushups and situps and jumping Jack's and stretching but cant do alot usually I try to do 20 of each but it's not easy
I’m not sure if it’s related, but I believe symptoms such as walking gait and bladder alterations can be quite similar. How long have you had TSP and what kind of symptoms do you experience?
Sir when I was 17 I got to know that I'm suffering from spg 11 that has damaged my nerves of legs and doctor said there is no cure it is increasing disease my nerves can even damage till brain your help will really help me bcz I have a single parent mom and she takes very much stress about me
thank you so much for sharing this video. Im 30 years old and I have had HSP since I was 20, im walking without any assistance most of the time (I'm making a lot of yoga and pilates). do you have an idea if I get pregnant and have a child it will increase the problem? do you know any woman with this conditions and bring babies? I will be very thankful if you can help me
As it is a hereditary condition, there is a chance that you will pass it on. I don’t know any females personally that have it and have passed it on. Although, my client has told me that his grandmother more than likely had it, and thus, passed it on to her daughter and then to him. Your best bet is to talk with a GP or neurologist, however, as I am definitely not an expert on this topic. Ps. Very cool that you are walking without assistance. How often are you exercising?
How did he pay for all of that? There lies the problem with U.S. healthcare. You can want to get up and go out and do those things and not have the ability or support group to do so. Also, he was given surgery to release the tension in his legs. I have begged for such a surgery and they keep telling me that it can't be done. Then tension I need released is in my quads, though, not my calves.
I’m very sorry to read that Lisa. I am also sorry that I can’t help you further. I would, however, suggest looking online to find a specialist in your area that you can have a chat to. I also strongly recommend reaching out to Jason-his contact details are in the description of this video. Lastly, I just want to say that there are methods to counter what is happening to you. So please don’t let this break you. I know it seems so superficial or cliché to say something like this, but you can manage it and potentially keep your condition from worsening. I wish you all the best
Hi Asbleigh. I'm also diagnosed with sporadic spastic paraparesis. Nobody in my family has it. I'm a physio myself. Exercise help alot. I've been a pilates instructor, but since last year I stopped, i became much worse..walking long distances with 2 elbow crutches( otherwise my feet get too tired, already had stress fracture in one of them few years ago), furniture crawling in the house. Will be focusing much more now on doing pilates/yoga home program, swimming and horse riding( studies shown it to reduce spasticity and strengthen core musles) funny how i long for the way i used to walk..although still spastic, but at least without crutches.😊 thank you for a very informative video. These guys are a great inspiration for me.
If you stumble across this video, please let me know where you're from and what websites/services you have used to help you.
Also, if you’d like to watch an interview with Jason, head here: th-cam.com/video/r4B3Ehyyql4/w-d-xo.html
Thank you 🤝
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
That is a great story Kieran. Thank you for sharing. Can I ask, what type of HSP do you have? And what kind of exercise do you partake in?
Hi Kieran, I also have HSP and love climbing mountains.... we should get in contact!
I have all hsp symptoms but still didn't get diagnosed
Tell us about exercises u doing
@@mahmoudsaber5177 It may be an option to seek out the HSP genetic test to clarify what you have. A quick Google can point you in the direction to attain this
Being diagnosed with spastic diplegia, I'm interested in what exercises you do?
I have HSP and recently discovered I had a rare gene being SPG79A. So not only do I have HSP, but ataxia as well. Everyday is a struggle but I am still walking with the aid of my rollator and I’m not giving up! I have had this disease for 17 years now and I’m almost 67- years-old.
Excellent video. I believe the disorder is underdiagnosed. People don't know enough about it.
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
My father has had issues with walking since 2009… many neuro and studies done with no results. Today he seen a neurologist that specializes in muscle disorders is testing my father now. Starting with genetic testing. We are from PR/PA/DE
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.
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.
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!
Thanks so much for sharing your story, Kurt. What types of symptoms do you experience?
@@HaydenPerno lower limb control impairment and muscle stiffness in lower limbs. It is the pure form, I have two brothers with it as well and my father
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!
You're welcome, Katlin. Thank you for sharing your story. Do you engage in any sort of exercise/sport?
They originally thought I had a disease called Charcot Marie Tooth disease or CMT. But turned out to be this HSP
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.
Exactly
And inability to understand what is going on and what people are asking them to do
Great video. I saw a patient with this the other day and came here to learn more. Jason is inspiring.
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!
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
M Hughes Thanks Michael, I'm glad to hear it was informative. It's hard to know if you put enough info into these types of videos. And thanks for sharing it. Have a good day 👍
Thanks Michael
I’ve got my first ever speech on here now under my name. I added it to a few support group pages and thanks again.
Just now checking this video, I myself have HSP and it makes my one true love of drumming so frustrating, thank you for this
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
Hi Crys Glidden
This year I’ve had HSP for 20 years now and I’ve been training now since July 2012 with my trainer Hayden (the one that made the video clip) and before I started I felt I was unfit with how I walk as it was a big effort. With me training I just don’t focus on my legs. I do legs, core and my upper half with cardio work too as it helps me do things that I would have struggled with in a big way if I didn’t train my whole body.
I have been asked by many what exercises should I do on my legs and then I think that the legs maybe the problem but you don’t get fit with your breathing and a good heart beat that recovers quicker from the training that gets done.
I walk and also use a wheelchair to get around. I use the wheelchair as I don’t want to fall over and hurt myself in anyway as this will make it harder to live a comfortable life.
So look after yourself and do things that you feel comfortable doing and what you want to do in your life that makes you feel happy in yourself.
@@jasonjones-mj1mb thank you so much for showing its possible to not give up on yourself
hsp@usa,com
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.
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!
Hey Swati, yep I messed up with that. I wrote the edit in the description, but there’s not much I can do about the video. Thank you for watching!
As a fellow sufferer, it's reassuring to know the exercises l do are in line with what has been suggested. Thank you.
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.
Hello!
May I Ask if he was sick ( had manifest simptoms) before he had you?
Thank you for this brief, informative, and hopeful video.
Thank you for putting this together. I have SPG 4, both brothers and mother. It's really tough slowly losing the ability to do things I love. Powerlifting at gym and hiking. It wouldn't be as bad if more people knew about it and awareness.
100% man. That is exactly what Jason says. More and more people are learning about this disease. The amount of people who have watched this video (and commented) shows just how much it is widespread and definitely not as "rare" as it is touted to be. How many days do you lift and hike? And what kind of exercises do you actually do?
I tried to talk to my doctor in my early 20's. At the time, my Grandfather & mother both were diagnosed with this. The doctor laughed at me, told me to loose 100 pounds & basically called me a addict thinking I just wanted pain medication. It was really disheartening & I gave up and just lived with my syntoms for the last 6-7 years, but my Uncle was also recently diagnosed & my syntoms have gotten worse. So next week I have an appointment with my doctor (A different doctor who I've actually grown to trust) to discuss this with her. I really hope I can get some help. Thank you for this video.
All my kids carry the gene for HSP. It runs through their father’ maternal blood line. Their grandma and most of her siblings, I think 7 of 9 have been affected by HSP in varying degrees with most of the affected ones losing their ability to walk altogether. My children’s uncle has lost his ability to walk normally by the time he was in his mid 30s. I am at loss for words on what to feel about this. I hope my kids live healthy lives as long as possible until they grow very old before this cruel diseases manifests
thanks for the vid, all my family got HSP in their teens, I thought it had missed me, but then in my 30's I was under extreme stress in my job, which brought it out for me. I use a wheelchair to prevent tripping over, this had made me put on weight, which is also unhelpful with HSP.
That’s very interesting. Is that what you were told by the specialists (in regards to the stress activating it)? Also, do you engage in any exercise at all?
I was never diagnosed with it but I always had a bladder problem, tremors in lower legs, terrified of walking in public places without a wheelchair.
Super video. Easy to understand. Thanks for making this. So good to see your face Jason.
Thanks for watching Lori
Hi Lori
This is me finally on TH-cam and I have just created my account on here as Hayden asked me to have a look at the comments on this link.
I’ve also put up my first speech up on here with the thanks to Hayden for asking me to do a talk/speech on the awards night for where I train at.
How’s the Potato Pants going?
Wonderful explanation of HSP and everyone who suffers with HSP should have their Family and Friends see and listen to this. Thanks Jason you are an inspiration :)
Thanks Suzie. Jase sure is! And thanks for watching :)
hsp@usa,com
This was so wonderfully, and empathetically done, thank you with all my heart!
When in high school, my Brother would tease his now wife about how klutzy she was. They are now 44 and she just received the diagnosis of HSP-4. She’s devastated, can’t play with her two little girls anymore, and she also now owes the hospital that diagnosed her $40,000. Because America. Anyway, thank you again for such a concise, clear, but positive video! 🤍🙏🕊
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!
All the best Chris. Feel free to reach out to Jason (his details are in the description of this video) if you would like to talk to anyone first hand that has been through it
Will do.
Enjoyed listening to his speech !
Hayden...thank you very much for this informative and encouraging video. I was diagnosed with HSP last year....but have had the symptoms since 2013....I'm 55 so it makes it more aggressive I was told. My doctor believes that my uncles on my mother's side (died before I met them) had HSP instead of MS....which is what was believed by the family. I really respect Jason's courage to move forward....I can truly understand his struggle!!
You’re welcome Stephen. Are you engaging in any kind of exercise protocol? Interesting about the misdiagnosis of your uncle. I wonder how many of those happen/ed. Thank you for sharing your story and all the best
@@HaydenPerno Great question....and no I don't. I have been finding great videos to help....but an actual protocol I don't have....any suggestions? and thank you for responding
It’s hard to say exactly what you can and should do, but I would recommend firstly seeking out a specialist. But if that’s not possible, I would look at the basics and try to get moving as best you can with those. So, squats and hip thrusts and push-ups and core work (e.g., swiss ball, rollouts). I have talked to Jason recently about us putting a complete workout tutorial together. I should get onto that!
Love the video Hayden, very informative. My daughter has complex HSP, we already know Jason through a support group. Thanks for making the video, I'll be sharing it on my daughters page to try to help educate people.
Thank you Leacie. And thank you for sharing it :)
LeacieLea Thanks Leacie. I educate people on a day to day basis with people I meet up with though my daily life. Have a great day too.
Thank you for this. My grandmother was diagnosed as having MS for 20 years before she was recently diagnosed as having complex HSP, and her mother was diagnosed at the same time as well. My mother has began to show some early signs of hsp, and not knowing much about what to expect besides my grandmothers severe case, this has given me a lot of hope
Thank you for sharing your story, Elijah. How old did your mother start showing signs and do you know if anyone else (siblings, cousins, etc.) who may have the gene? There is always hope. Jason and every single person who has commented on this video shows that. It makes me happy that a video like this can bring people together. I hope one day stem cells or something even better may help everyone affected
Hayden Perno mid 30’s, she’s waiting for insurance to approve the genetic testing as of right now
Keep us posted here please. All the best
From South Africa my son was diagnosed 8 years ago and my daughter 12 years ago both in there early 20st
Great video, easy to understand
Thank you Margaret!
I greatly applaud the determination of this young man. I myself am an avid bowler, and for almost ten years I've had to deliver the ball just by standing at the foul line and releasing it with a half-step. But I do it thrice a week! It is my upper body physical workout and is a very social one. Again, I admire everyone involved here.
Great story. Keep it up
Thanks and great work in keeping busy. Also enjoy your social meets with this too.
My little girl has this we just found out thanks for posting this
Cool video! I like how you give such a comprehensive overview, can’t wait to check out your other videos. One thing though...HSP is an upper motor neuron disease (causing muscle spasticity), and not LMN (muscle flaccidity).
Good call. Thanks for pointing that out. I totally overlooked that when I put this together
This is superb! (My husband has been diagnosed with HSP.) Thank you so much for sharing it - also thanks to all the people who have added useful advice, which is incredible. This has confirmed a lot of the strategies I've been nagging him about (strength training, swimming etc). Thanks again!
Glad to hear it Cheryl. All the best with your husband
hsp@usa,com
This is me. I was born with sle I have about 9 other auto immune disorders. Told I would be in a chair three yrs ago .just got home from hospital last week. A doc diagnosed hsp 2016 now today I woke unable to walk on my own my wheelchair is now my world . Thanks for this ps I am 48 nowp.ss I live in Sydney Australia
Molly Mayor Thanks for sharing your story Molly. Don't let the diagnosis bring you down, it's definitely not the end. I encourage you to reach out to Jason (his Instagram is in the description) seeings as though you live so close
Hayden Perno I'll have to get me an Instagram lol never used it but I'm sure I'll figure it out.
For yrs doctors have said I'm on borrowed time so this wasn't a shock. I guess that little denial has gotten me through. I'd love to catch up. Not many of us out there . Thank you so very much for looking out for your friend and sharing his story. Fantastic have a wonderful day xoxo
Molly Mayor Hi Molly Thanks for sharing your story here. Be strong and enjoy your life to how you can now. We all have our good and bad days from one week to the next.
I’m from the Wollongong/Shellharbour area. We are not that far if you want to meet and chat one day.
I also have a like page on Facebook which is ‘My Journey with HSP’ and you can write to me there if you don’t have Instagram.
Thanks again Molly
jason jones hi Jason I'd love to catch up. I don't drive and thankfully my new electric chair will be here in a few weeks. Long needed. I have two amazing grandsons 18 months and 3 months. When my first grandson started walking and I caught it on tape well I walk like he did. Infact he walks better then I do now lol. I live alone and I have wonderful carers. I joined Instagram and I followed you on FB . So nice to meet someone who understands, anyway let's work this out maybe even face time or something. Anyway great to chat thank you so very much for sharing your story xoxox
That’s so cool about your grandsons and you getting a new scooter soon. FaceTime is ok with me too.
I have seen a lot of people with HSP that didn’t know anybody else that has it and other that keep quiet as there partner doesn’t want others to know what they have. I’m doing this to motivate people with and without a disability and teach people about HSP.
I know I have educated heaps but there is a lot more out there too.
Awesome video. Thanks
Way to go Jason!
Thank you for this video. I am 64 and was recently diagnosed with hereditary spastic paraplegia by my neurologist, after considering symptoms and family history. My first born child passed at the age of 26 from affects of what my neurologist believes was undiagnosed hereditary spastic paraplegia. She has not yet begun performing any genetic testing. I also have a history of brain scarring from a right hemisphere hemorrhagic stroke I suffered in 2015, which left me temporarily paralyzed on the left, neck down. I have since recovered my ability to use my arm and leg on the left, although I do still experience residual weakness as well as frequent and sometimes severe muscle spasms. I also experience hyperactive reflexes in lower limbs. Definitely more interested in addressing the issue through nutrition & movement than pharmaceuticals. Very interested in any suggested resources along those lines. I, too, am a fighter. I've long planned to make it to 100, & I don't intend to let this change that.
Thank you again✌️💖☀️
My 6 year old daughter has HSP she went from walking and dancing to crawling. Thank you for making this video💖💖
Thank you for sharing your story, Melissa. I wish you and your daughter all the best ❤️❤️
Thank you!! This was really useful for my coursework!
Haha you're welcome Torie! :)
@@HaydenPerno I have hereditary Spastic paraparesis and no one in my family suffers from this the gene is rare
I suffered with HSP4 for 40 years and was genetically diagnosed a month before my 41st birthday last week. I've had a pretty tough and confusing life so far and it's not getting much easier.
Thanks for the video, I have been living with HSP for 7 years. I have the complex but I’m 38 doing all I can do to not end up in the wheelchair. I try everyday to run. One day I will and it will be the one of the happiest days of my life..
Keep it up. Do you do any strengthening exercises?
@@HaydenPerno I do ,I’m trying to work on my balance as well. So I’m doing upper and lower. But to run around the bases at the baseball field with my boys again is what I’m really striving for.. any exercise you recommend I will definitely try.
You can run?? Wow that's awesome. I struggle to stay upright walking across an open room without a cane. I use 2 canes at the moment for stability. How do you manage your HSP?
I was diagnosed when I was 14. I was born with it but they didn't know what it was until I was 14. I also have learning challeges with it. They told my parents that I may never be able to go to college but guess what? I'm in college studying communications with a concentration in both video and audio production and I just got a job at Target. I'm 21 years old. I don't drive yet but I am hoping someday I will be able to drive. Everything is a little bit better for me now since I started seeing a homeopath. I feel so much better I have not fallen in 2 years. I just gotta be positive with my disease.
Maddy, this was so good to read. You have an amazing attitude and I am so happy you are taking your disease in full swing and actually rolling with the punch of it. Jason drives everyday and he has no real issue with it, and I hope one day you get to sit behind the wheel! Thank you so much for sharing your story
@@HaydenPerno Thank you. I used to not be able to feel temperature on my feet but ever since I went gluten and dairy free and stopped eating fast food and drinking soda things have been better for me. My homeopath really makes me feel better. Now when I go swimming I can feel if the water is too hot or too cold on my feet. I used to have to actually have to get in the pool to see if it was too hot or too cold but I am so glad that I can feel with my feet now.
I got diagnosed with hereditary spastic Paraparesis im the only one in my family has it ssso its rare
Ik ben ook de enige in mijn familie!!
Mijn neuroloog heeft mij verteld dat je als embryo in de buik van je mama zelf ook een fout in je dna kunt ontwikkelen.
Het is gewoon dikke pech hebben.... niemand snapt je en voelt je pijn.
Hier in Nederland ben ik 8 jaar voor psychisch gestoord verklaard, december 2022 eindelijk diagnose gekregen
I hope u can translate it because i put it in dutch
I am currently undergoing genetic testing for this disorder. But it definitely fits me to a T. It’s nice to see other people who’ve gone along this mystery path with me.
Yep, you're not alone Katie. Make sure you reach out to Jason (Instagram link in description) if you need someone to chat to
Hi Kate
I’ve final got my own TH-cam account and have uploaded my first ever speech of HSP and some things that has happened in my life with HSP.
Be strong and live each day by day as we all suffer differently.
Ik heb als embryo zelf een fout in mijn spast gen ontwikkeld.
Ik kon laat lopen en liep raar, ik heb nooit kunnen rennen.
In mijn tiener jaren begonnen de krampen in mn kuiten en later in mijn hele benen.
Nu in minder dan een halfjaar moeite met praten, slikken, last en pijn van mijn handen. Ik val zomaar om wanneer ik ga staan.
Kramp in mijn tong en handen in de nacht.
Binnenkort start ik met baclofen als eigenlijk laatste hulpmiddel voor spierspanning en spaspmen etc.
Ik ben nu 17
I was diagnosed with HSP, SPG10 a few months ago. The leg pains and spasms are ridiculous.
Hello Tyler. Sorry to hear about that man. I know Jason has these a lot too. And I know they suck.
Sometimes what he finds helpful is foam rolling and activating the muscles in them as much as possible.
For foam rolling the legs, please check out th-cam.com/video/ipVbSFLViiA/w-d-xo.html and th-cam.com/video/qNrVAhmMuSY/w-d-xo.html.
For activation of the muscles, sometimes it can be as simple as tensing the muscles in them for 10-30 seconds, 3-4 times, and repeated a few times throughout the day.
I hope this helps. Let me know how you go
How do I save this video. This is the best descriptive of my HSP that I have seen. Just seeing this, I have to call my neurologist!
Never have I ever been told I have complex HSP. But it looks like I do.
I was diagnosed around two from walking on my toes.Im Pretty stubborn and that has helped a lot and mostly my faith.Im 56 now and my hamstrings feel like their in a vice but not ready for a wheel chair.Ive never met anyone else with it so this is nice to know I’m not alone😀
If you ever come to Australia, you'd have to meet up with Jase. He knows several people living hear him with HSP. One day you all should organise a big function/seminar
In my whole paternal and maternal family m only person with this disorder(HSP)
I'm 23 years old and during my early life i even didn't notice that m suffering with such disorder...I used to run and play but frequently i fell while walking or running.. Whenever somebody says how do u walk? I always wondered! Is there anything strange with me?
Then i saw my self in mirror while walking. It was shocking for me.
We consulted neurosurgeon at age of 16 and i was on medication for 4 years but no appreciatable result had seen.
Then i quit medication.
Recently i again consulted with neurophysician and he told that i have HSP. I am on medication again. Hence there is no proper treatment of HSP but Dr said that Medicines provide support indirectly.
I have poor balance. At home I can walk on my own,but outside from home i hold my sibling's hand for walk bcz of low confidence and poor balance.
I hope for the best in future❤
Thank you for sharing your story, Arfa. I wish you all the best on your journey
I was born with HSP, over the years it has done nothing but progress to the point that I can hardly do anything for myself with out some help. It effected my legs from the beginning but now is attacking other parts of my body like my intestines, lungs and arms. I will continue to fight it and at the same time; I will continue to go through it in a positive manner. I have found humor in wheelchair jokes. This is my coping mechanism. I was 10 at the time that I was diagnosed by Walter Reed hospital back in 1978. I literally became the human Guinea pig the week and half while I was there.
Thank you for sharing your story, Redinna. I’m sorry to hear that you have battled HSP since birth. That would be difficult-especially since the late 60s. I wish you all the best and I will pass this story onto my client. Cheers
We have HSP on my mom's side of the family. My mom and the family didn't know what it was called, but called it "the crippling disease". It wasn't until several years ago when she was diagnosed that we knew what it was called. From what I've read on symptoms, I think I may have it. Time will tell. Does or did anyone have issues with toe walking? I toe walk only on one foot, and am wondering if this could be a symptom, I haven't really gotten a clear answer with research.
Great video and by the way you are doing a great job with your HSP disease. I am from Germany, showing all symptoms of HSP since I turned 40. Had several problems with bladder and walking before but nobody had a clue what it might be. I am not genetic classified yet. Had some strange neurologists before. I am in a german support group for HSP. If you feel like you can contact me.
Danke for sharing your story, Markus. Sounds annoying about the strange neurologists. Will you be seeking out a proper diagnosis? I also definitely recommend contacting Jason: social media = @myjourneywithHSP
How are you doing with your HSP Markus? I can relate to your bladder issues. Hope all is well.
I started abnormally waling at the age of 4 and as I went to doctor after doctor and underwent multiple test I was finally diagnosed with HSP at 16 years old I used to not use anything to help me walk when I was in elementary school as I got older and moved on to middle school I started needing to use a walker to help me get to post A and point B. I currently still struggle with trying to process that I have it but hopefully one day their will be a cure but I will not give up which is why I want to be a Medical laboratory technologist and do research not only on HSP because it is so under diagnosed but also things like cancer and other rare diseases I want to help people in hopefully giving them the answers to their frustration like me. Thank you for sharing this video.
Thank you so much for sharing your story, Mariel. You seem like a very positive person taking it all head-on. I wish you all the best with pursuing your medical lab technologist goal. And look forward to reading the books you publish one day on what you learn and discover!
Is any cure , treatment available for hsp...??
Please let me know...
@@swapnilhelkar769 unfortunately there is not
The only treatment is physical therapy but no cure and physics therapy doesn’t not reverse it it just helps from fatigue
thank you for this. i was diagnosed with hsp aged 49. they believe it to be from my mums wonderful genes. i have steadily gotten worse during lock down with everything closed. i walk so far n then that's it my legs just stop. i get all the tight hamstrings where i end up walking on my tip toes. sadly i also suffer joint hypermobility syndrome too n my worse area is my lower limbs. so between the 2 im having a bad time. thank you for showing me what stretching etc can do. im going to join local gym where the PT won PT of the year 3 yrs in a row for the UK in the hope him and his team can devise a program for me to regain muscle mass n strength. i can cope with pain n bladder issues that come with both conditions but i refuse to accept im wheel chair bound. yes like most ive read ive fallen over alot etc but sometimes im not sure if this is HSD or HSP they intertwine in some symptoms. are there any uk fb grps/ grps i can to learn more. my gp n neurologist more or less say get on with it n take ur meds but thats not good enough. ive asked for physiotherapy n been told lets sort sleep first. feel like im being fobbed off. i had to leave work due to it or end up in a wheelchair. my wish is to regain strength in legs so i can work again n have a life. sorry for long essay but its first time ive seen something that actually gives me hope.
I am been dealing with hsp since I was 8 but now I am in a wheelchair for the last 6 years but I want get back to walking but it is not easy
WWith me, it started when I was eleven in 1973, before there were CAT scans and MRIs. I did not have genetic testing until 2017. Until than, I was told I had idiopathic spastic diplegia. After the testing, HSP, even though no one on either side of my family had/has anything like this. As the years went by, I went from waddling when I walk to needing leg braces, canes in both hands and a walker. I have the Baclofen Pump and, in a coule of weeks, will get new leg braces that were recently put on the market. This disability wrecked my life. The monastery I belonged to paid for the Baclofen Pump to be put in me, but they though it was a cure, and cast me out when the physical thereapy and refill bills came in. I wish they would find a cure.
Thank you for sharing your story. I hope one day there is a cure, or, at the very least, technology that overrides the nervous systems malfunction. I wish you all the best for your new leg braces and the recovery following
Hey, i was diagnosed at the age of 3 with HSP. I had that rare disease from my Mother and she had from my grandfather and my grandfather got it from his mom. I have brother and simptoms of hsp we remarked when he was 15. My kind of HSP is more more expressed than my mom and grandfather. I have one questions, how big are chanche my children to have HSP? I think is more than 80% 😔...
I’m not sure exactly, but I believe passing on a gene like HSP is usually at least 50%. You are better off asking your physician, however. Thank you for sharing your story. It’s always interesting (and sad) to read everybody’s own take and experience with HSP. I hope one day stem cells or something else helps you all
Great video, thank you.
It hopefully will help people understand better what is going on.
I recognize the path he went trough, much respect how he handles it.
I started tripping and falling down about 20 years ago, it took 10 years to find out what was wrong.
I was also convinced that doing nothing will only make things worse, so i started exercising to keep myself mobile for as long as i could.
About 3 years ago things went downhill fast, couldn’t step without sticks anymore and increasing the dose of medication didn’t help either.
I now have a baclofen pump and use cdb oil, rest of medication i stopped.
I go for stretching and hydro therapy on a daily base.
Especially the hydro therapy works for me good.
I still used to be able to ride my electric bike and walk with sticks up-to a couple of weeks ago.
Since a year i am complaining about pain in neck, shoulders and wrists.
Again lot of research, tests etc.
Now the conclusion is, I put too much stress on my system by riding the bike and trying to walk. So now this is also gone unfortunately.
I just want to warn to not overdo the exercise for strenght, my specialist tells me this caused the situation i’m in now and have to accept it.
Luckily I have a lot of fun in the hydro therapy and this I can continue to do since it puts no extra stress on my system.
I wish you all the best and keep up being positive with the way you’re dealing with hsp
Thanks so much for sharing your story Remco. It is an interesting point you make in regards to overdoing it. How much exercise were you doing specifically for this to be the situation? And what type was it?
hsp@usa,com
It was not only the exercising, but more the total lifestyle. Work hard, play hard, party hard.
The moment i couldn't walk normal amymore i started cycling and did around 300/350 km a week to train, not a good idea.
When that was not possible anymore i got an electric bike and did about 3500 km a year.
So that is also is finished now.
Than one moment i got an serious infection in my intestines and had to stay in the hospital for a week. Doctors said to stay home for 4 weeks and rest but i got back to work and all after a couple of days. Than on one point my body said stop and since than all went downhill.
So what i try to say is, when you are in our situation listen to your body.
Our body has already work anough to keep us traight and in balance.
I am 100% if i had listened to my specialist and lot of other people i would not be in this situation today.
It will eventually happen, but not so soon i think.
I now totaly changed my lifestyle, eat more healty, limit alcohol to a minimum etc.
I do this now for 8 weeks and lost 8kg and feel much better, inhouse i don't use my rollator anymore and i can stand up longer again without everything going in a cramp after 10 minutes.
I am not good in writing all down, but i hope my story can help people
Father have it and he’s on bed from 15 years and its getting worst 😭
SPG4 runs in my family. at 2:54 you say it occurs in late adulthood but at 5:47 you say his dad and brother both developed it in their 20s. I'm 25 and feel I have some of the symptoms.
From what I understood when writing that particular slide, "adulthood" begins in your 20s. Jason started to develop symptoms at 26. I'm sorry to hear that SPG4 runs in your family. What symptoms are you experiencing? And have you been diagnosed for carrying the gene?
my son affected hsp3A diagnosed 2years.now he is 2.5years old.we will do some excercise last 6month but angle titenes not reducing.pls share some excercese for my son
I need some help. My oldest daughter has been dealing with HSP complex type 11 since she was a preteen. The last year she went through an episode of wanting to die and yelling and screaming out at her staff. (I had to turn her and her brother over to a wonderful establishment as my back is breaking down after collapsing 2 levels in my neck). We found out this fall that both have HSP as listed above. My daughter is wheelchair and bed bound. It is hitting her bowels, hands, feet, legs, arms and now her brain. My son right behind her and now I am having symptoms since last January. She is back to screaming at staff and has started throwing her property at staff. I have read that this aliment can affect behaviors. What can I do for her? Is there anything people have done to help individuals being affected by HSP type 11 complex version?
Thanks for this informative video. I started experiencing systems of the condition a little more than two years ago, stiffness and
severe walking problems, the strange thing is I can ride a bike, elliptical at the gym and rowing machine with little trouble. I am 63 now. The other possibility is nerve damage due to vitamin B12 deficiency.
Best of luck to you and all!
That's interesting. Have you been assessed by a specialist?
Yes, by an experienced neurologist. She has me on baclofen and B12 supplement. Next steps, genetic testing and she is consulting with her colleagues on my case.I am doing daily workouts at the gym, elliptical for an hour and 200 pushups, almost never miss a day. Other than my walking I am in great shape. I loved to hike but that is now imposable, but I can at least mountain bike.
hsp@usa,com
Ralph, how are you now? I hope you are still in good shape. Do you have muscle cramps as well? What are your suggestions? Are you still doing fitness?
@@us3804 Thanks for asking. Yes still doing my fitness routine. I am in very good shape except my walking. My walking has not gotten worse, its the same as it was 3 years ago. I do have cramps, maybe two or three times a week, they don't last very long, maybe 1 or 2 minutes, Cramps go away when I standup.
My suggestion, Cardio exercise almost everyday. Pushups and weight lifting if you have time. But cardio using legs is a must in my opinion. Do as much as you can with your legs. You need to maintain the range of motion of you legs. ( Of course check with an MD before starting an exercise program)
One more thing, if you are overweight you should try and shed those extra pounds, your legs will thank you.
I have something that seems to be in this family of disease but have yet to find a dr who can determine it exactly. It sounds just like this, but its only my arms and I've had the problem since I was a kid (Now in my 40's). I had learned to live with it while I was young as it wasnt too bad but as I have aged its just got worse and worse and its now to the point I can bearely hold a pen/pencil and write for more than a minute or two before the muscles tight up, spasm, and sometimes lock up/dont respond properly and shoot pains up my arms and I only get relief when I curl my arms up in a wierd curl. Every dam dr Ive seen since a kid just shrug as if I'm making it up because they cant find anything in blood tests. Claiming it sounds like arthritis, while I have none of the other signs of arthritis or blood test results.
My dad has hsp and wasn't diagnosed untill older age [ 30-40] he is now 43 and was diagnosed with unset parkinsons . It really is a horrible disease
My wife have hsp we just find out after 4 year.just want to know what type of exercise she could do to help her walk again....thanks
I would like to know the surgery Jason had and where would you go to find a Doctor that does it. My son was diagnosed and is struggling with walking. We are in Ohio. USA.
Hey Linda. The surgery was bilateral gastrocnemius tendon release surgery. We are in Australia (near Sydney), so I'm not sure what would be best in your area. But I'm sure there are options over there. Let me know if you have any more questions
Hello people here,
I have seen so many comments where people have shared their experience with this disease
My sister is also suffering with this disease
She is 27 years old and her condition is not improving
She walked on her toes and dragged her feet from an early age of 12 and was a bit slow in understanding things
But from the last three four years her balance has decreased alot and she is getting slurry in her speech and urinary urgency has increased a lot
She is some nights getting up in 3-4 times for washroom
She falls a quite bit and takes support of walls and chairs
Ordered a walker for here for going to washroom in nights
Please guide me on how can I make her condition stable
Thank you alot for the help in advance
Magnesium helps as I take 1 tab daily.
Awesome! I was diagnosed at the age of 23 years. I have many difficults to walk! But i try hehe
Thanks for sharing your story, Cristiano. I wish you all the best
I have SPG11 and SPAST(SPG4). No Pathogenic variant was detected. Both SPG11 and SPG4 are heterozygous for my case.
Very interesting. What symptoms do you have?
@@HaydenPerno The SPG4 heterozygous is 0.54% avg frequency. Super damn rare. Spasticity, abnormal gait and weakness. Require a walker. My neurologist says my symptoms shouldn't have happened because there is no pathogenic variant, but I do have symptoms. The HSP panel is uncertain why.
I have a newly diagnosed relative with spg11 but in our country no one have enough information even her dr , and we are very confused 💔
I have one sibling with this what are the chances more of us have it coming down the line
Well done Jason I have HSP 4
James Goss Thanks James.
I was told I had it, I'm not really sure if there's a test for it or not, my neurologist just observed me walking , it has gotten worse the past few years and I try to fight it. My dad has it really bad, he's 83, he can't walk , he has a scooter and wheelchair. I'm trying not to get that far.
He did do a spinal tap but it all came back neg. For CP
There are gene tests that can clarify what you have. Google: HSP gene testing.
As for fighting it, you may not be able to stop it completely, but you can definitely slow down the effects. Jason is a living example of this, and so are so many people who have commented on this video.
If you remember, could you please come back here after you have received a genetic test? Thank you and I wish you all the best, Tandi
@@HaydenPerno thank you so much. As far as fighting it, I meant that was trying to keep from wheelchair or scooter. I know the time will come but I have it, it doesn't have me.
Lower motor neurone? When I look up hsp it says it affects the upper motor neurons
Yep, you're right. I unfortunately screwed that part up of the vid, and only managed to correct it in the description. Sorry for the confusion
Oh ok, thank :) I’m going to ask if I might have this issue.
Let us know how you go
I was reading about lower cross syndrome and they seem to have similar affects in terms of tight/short muscles and weak muscles? just that lower cross syndrome isn’t a neurological condition
How did SPG4 skip a generation if it's autosomal dominant?
It's a good question. It might not have actually skipped a generation, and rather lay dormant
When I was 21 I started having symptoms but no could find out was was causing them when I turned 48 I started having trouble with my vision iam 50 now and now iam limping alot that's when they found out I have hsp 47 a neurologist finally discovered what I have also a DNA test found I won't give up but I do hate the tripping and losing balance
Thank you for sharing your story, Steven. Do you engage in an exercise regime to maintain your mobility?
@@HaydenPerno I just started doing pushups and situps and jumping Jack's and stretching but cant do alot usually I try to do 20 of each but it's not easy
Recently I also diagnosed 😢
Hi,is (tsp ) in any way related to hsp?I'm 42 and diagnosed with tsp,it's a real struggle,no known cure or treatment,if there is please let me know.
I’m not sure if it’s related, but I believe symptoms such as walking gait and bladder alterations can be quite similar. How long have you had TSP and what kind of symptoms do you experience?
Great video! I have SPG7
Kristen Binder thanks Kristen :)
Be strong and keep going.
I have this condition. I was born in and live in Malawi. It's hard.
I am very sorry to hear. Are you exercising/trying to move as much as you can?
how to contact you hayden perno? my brother also suffering from HSP
Very sorry to hear. Please contact Jason over on Instagram: @myjourneywithHSP
I have had HSP for 8 years now
I am sorry to hear (read) that. What type do you have?
Thank you
You're welcome!
Sir when I was 17 I got to know that I'm suffering from spg 11 that has damaged my nerves of legs and doctor said there is no cure it is increasing disease my nerves can even damage till brain your help will really help me bcz I have a single parent mom and she takes very much stress about me
thank you so much for sharing this video. Im 30 years old and I have had HSP since I was 20, im walking without any assistance most of the time (I'm making a lot of yoga and pilates). do you have an idea if I get pregnant and have a child it will increase the problem? do you know any woman with this conditions and bring babies? I will be very thankful if you can help me
As it is a hereditary condition, there is a chance that you will pass it on. I don’t know any females personally that have it and have passed it on. Although, my client has told me that his grandmother more than likely had it, and thus, passed it on to her daughter and then to him. Your best bet is to talk with a GP or neurologist, however, as I am definitely not an expert on this topic.
Ps. Very cool that you are walking without assistance. How often are you exercising?
How did he pay for all of that? There lies the problem with U.S. healthcare. You can want to get up and go out and do those things and not have the ability or support group to do so. Also, he was given surgery to release the tension in his legs. I have begged for such a surgery and they keep telling me that it can't be done. Then tension I need released is in my quads, though, not my calves.
I have hyper static paraplegia
I have hereditary spastic paraplegia it's not easy to live with alot of physical therapy
What kind of physical therapy do you do?
is they a cure to put a end to this virus. thry cure for cancer and covid.😢😢
I have hsp why are my feet turning in why do I walk the way I do I would like more information doctors know nothing but mange the symptoms
I’m very sorry to read that Lisa. I am also sorry that I can’t help you further. I would, however, suggest looking online to find a specialist in your area that you can have a chat to. I also strongly recommend reaching out to Jason-his contact details are in the description of this video. Lastly, I just want to say that there are methods to counter what is happening to you. So please don’t let this break you. I know it seems so superficial or cliché to say something like this, but you can manage it and potentially keep your condition from worsening. I wish you all the best
@@HaydenPerno thankyou very much
Can u please share ur email or any contact so I can contact u...
I am also suffering from same
How were you when you sat and walked?
I have hereditary spastic paraparesis but it's not hereditary as the gene hasn't been discovered
That is interesting. Do you have similar symptoms as discussed in the video?
Hayden Perno I do indeed
Hi Asbleigh. I'm also diagnosed with sporadic spastic paraparesis. Nobody in my family has it. I'm a physio myself. Exercise help alot. I've been a pilates instructor, but since last year I stopped, i became much worse..walking long distances with 2 elbow crutches( otherwise my feet get too tired, already had stress fracture in one of them few years ago), furniture crawling in the house. Will be focusing much more now on doing pilates/yoga home program, swimming and horse riding( studies shown it to reduce spasticity and strengthen core musles) funny how i long for the way i used to walk..although still spastic, but at least without crutches.😊 thank you for a very informative video. These guys are a great inspiration for me.
Adri Theron when I fall over I have to crawl too
I'm getting a electric wheelchair soon
I was diagnosed with this spg11 at age of 13
Can this be cured??
I have a newly diagnosed relative with spg11 and she’s 15 … we are so confused
Is it possible to get rid out of HSP?
Unfortunately not. Hopefully one day there will be some sort of medical intervention. For now, maintaining as much movement as possible may help