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Oh Yes She Cane
Приєднався 1 чер 2020
Hi, I’m Kerry and I have a rare genetic nerve disease called hereditary spastic parapaplegia, HSP for short. The disease causes my muscles to be both weak and tight and shudder when I walk.
I want to share with you how my disease impacts me and how I do my best to not let it stand in the way of my living my life to the fullest!
Blog: ohyesshecane.com
I want to share with you how my disease impacts me and how I do my best to not let it stand in the way of my living my life to the fullest!
Blog: ohyesshecane.com
Fall down with me and my HSP (hereditary spastic paraplegia)
Things were a little chaotic tonight! I ran over my phone with my hand cycle, fell over recording a video, and had a drink explode on me. Hopefully the trifecta is complete.
#fall #handbike #handcycle #spasticity #hereditaryspasticparaplegia #multiplesclerosis #cerebralpalsy #ohyesshecane
#fall #handbike #handcycle #spasticity #hereditaryspasticparaplegia #multiplesclerosis #cerebralpalsy #ohyesshecane
Переглядів: 270
Відео
Ride 12 miles with me, my hand cycle, and my HSP (hereditary spastic paraplegia)
Переглядів 3152 місяці тому
I’ve had my hand cycle for a couple months now and finally took out to a paved trail for a long ride.
Hand Cycle with me and my HSP (hereditary spastic paraplegia)
Переглядів 6513 місяці тому
Just some thoughts on my new hand cycle now that I have done a few rides.
First time getting out of my hand cycle
Переглядів 1,1 тис.3 місяці тому
First time getting out of my hand cycle
Walk with me and my HSP (hereditary spastic paraplegia)
Переглядів 11 тис.4 місяці тому
Traveling is always fun, but when I am out of my comfort zone my body feels it! I had a lot of long car trips and then stayed at my parents house which is a carpeted two story home.
Adapting your environment to your needs
Переглядів 10 тис.Рік тому
Adapting your environment to your needs
Move with me and my HSP (hereditary spastic paraplegia)
Переглядів 6 тис.Рік тому
Move with me and my HSP (hereditary spastic paraplegia)
Work out with me and my HSP (hereditary spastic paraplegia)
Переглядів 2,2 тис.Рік тому
Work out with me and my HSP (hereditary spastic paraplegia)
Sorry! It always comes in three’s right?
@@PinkandPossible yes! Thankfully I got them all in at once!
Not as smooth moving as I used to be, but I still got it!
How do you find walking at night? I have much more trouble when it's dark and I'm not sure if it's a psychosomatic thing or something physical.
Walking at night is okay so long as it’s dark enough that street lights are on. I have not walked in the woods in the dark in a long time so I have no clue how that would go! The worst is when the sun has gone down, but street lights have not turned on. Everything has this grey cast to it and it’s hard for me to see therefore hard to see where I am stepping and my balance and orientation really gets thrown off.
We found this little trail while out to pumpkins!
Falling down is serious to most people. Hopefully, you will never understand.
Impressive!
Do you drive a car? I have this condition and I drive my truck every day. No problem getting in and out. Also do exercise bike 20 minutes a day as well as treadmill. Keeps my heart in good shape. Stretch daily, core exercises, weekly massage, dry needling and cryo therapy at the hospital every 3 months. I have never fallen down. Stairs no problem. Have to keep positive. Managed to walk 10 steps for 3 days in July.
@@ve4mm yes, I drive. I like the elliptical and have a trike, but love the hand cycle because I can go so fast and am not worn out afterwards like I can be when I have a more leg focused workout. I just do massage once a month, but could definitely do it more often. How does dry needling and cryo help you? I’d love to know more! As for falling- I’ve been a frequent faller/tripper-over-my-own-two-feet-er since I was 12. It’s actually what lead us to know something was wrong with me. I like to say I’m a professional at it now.
I would like to see you get out of it
I have SP 7. I could not get my Rollator into my 911 Porsche. I bought the able life space saver walker from Amazon. it folds easily, but there’s no seat. be thankful someone is helping you.
I have HSP SPG4 and i would never try this.......looks easy but getting back to the drivers door would b too much hassle
That’s understandable. I’m ok with having a hand on my car, but sometimes I hold onto the bars of my roof rack for extra support. I guess I could use a cane too for additional support.
I just tried a hand cycle at a gym today and I think it's pretty neat! It works my hands and arms after I've used other equipment.
That’s awesome!
Yesterday, I discovered that my twins have Hereditary Spastic Paraplegia 56.
Where would we be without our hubs? ❤
@@PinkandPossible he’s the best! Nothing better than having a supportive partner in life!
Yes. I hear you ❤. Every day is arm day for me too
1. I love having something I can do where it doesn’t matter what’s happening with my legs that day. If I am super spazzy, who cares? I’m safely seated and using my arms to power myself- not my legs. 2. I can just get on the hand cycle and go! I don’t have to drive to a class, I don’t have to remember to bring equipment or a change of clothes. 3. I can go fast! Everything I do is slow because my disability restricts how I move my legs, in addition I have to be mindful about how and where I move my legs to prevent falls. By powering my hand cycle with the strength of my arms I am no longer limited physically, and by feeling safe and secure while seated in my hand cycle, I also have the confidence to go fast because I’ve removed the fear of falling.
I don't know if mine can break down and now I'm scared to try 😂
I think most do! Give it a go… gently!
I have hereditary spastic paraplegia and use this rollator when I walk. Today we were at The Home Depot and it was easier for my husband to wheel me around. Here he is breaking it down and getting into the car.
He deserves his own video. Make sure he knows he’s appreciated.
你好 能联系到你吗 我也是患者
加油
Now, there is no reason to be frustrated. Be happy!
You go girl 💕
Thank you!!
You go girl 💕
Hi do you have any kids? My wife has got it and shes passed it onto my boys
I do not have kids. Some of the genes that carry HSP are dominant and some are recessive so it’s not a guarantee it will be passed down. And then, like me a gene can mutate without any family history!
This looks so familiar! 2 of my children have these. After 30 years, we finally diagnose that fit. Spastic paraplegia type 11. Sending you prayers and positive energy!!
Ahh, such a long time searching for a diagnosis! I’m sorry they have to deal with this stuff too, but what a relief to have a diagnosis!
wow your pretty
You walk exactly like I do. And yes, I also wish parallel bars were installed everywhere. How is your sleeping?
It would make life so much easier! No issues sleeping.
Beautiful scenery thanks for sharing. Subscribed
Thank you!
So cool to see you walking along the beach. On my Rollator, I usually come right up to the edge of the sand because I don’t like getting the grit in my wheels.😂
It wasn’t too bad dusting it off at the end. But I can totally understand not wanting to deal with cleaning up sand!
nice trip
It was!
12 miles is no joke. Great job. I hope you can ride regularly.
I didn’t appreciate how much work it was until it was done, and I was TIRED!
I myself am tired of walking funny its so hard...next week im getting tested for the baclofen pump and if i pass im getting 1 installed ive been walking crazy for 5 yrs and im sick of it....lifes to short i wanna enjoy what time i have left....
@@williambean6126 I hear you. It is exhausting and even more so in this summer heat. It’s physically and mentally taxing to move like this. Best of luck with the pump. I hope it works out and gets you the results you are expecting!
Wall surfing,not recommended You might get away with it for awhile but a fall will come believe me
So far so good here, but I can see how eventually it would be risky!
I have the same disease and I do not know anyone who has the same disease except you who faces many problems and questions
That’s why I like to share! It’s nice to have people who can relate to what we deal with!
Hello, I am Karim Ahmed and I have the same pain HSP But I developed the disease when I was 20 years old, and now I am 23 years old. Some doctors suggested that I inject Botox into my legs. I would like to contact you, please 00201029523482
Hi Kerry! Just started following your journey. My brother has HSP SPG11. Hope all is well with you!
I have SPG5. I hope you and your brother are doing well!
I don’t know where you’re from, but you should consider joining the Handbikebattle in Austria some day. Great adventure!
I live in the USA, but that looks like a really cool competition!
I have paralysis in my legs but o can still.ride a bike but can not walk far
That’s awesome you can ride!
Wait I’m new here I just have a question is something wrong with your leg I saw u moving it with your hand?
Yh i wanted to ask but i dont wont to seem disrespectful ❤
she talks about it in her channel bio
Yes! I have hereditary spastic paraplegia which makes my leg muscles weak.
@@ohyesshecane ohh ok thanks for clarifying
@@brysonking1406 you’re welcome!
Enjoying the views on my ride!
Yes 👍🏽 Trying to find different ways can be a real task. Once you get it, you’ll be more comfortable 💜
I feel a lot better getting into the hand cycle this way. When I was sitting first and contorting my leg to the other side I was afraid I was going to hurt my knee. I struggled with this attempt, but I really think it was due to different positioning of my stabilizing hand.
I can help you ❤️ ❤
Congratulations. Cool bike. You really capture the way I feel when out on my recumbent trike.
Aw that’s so cool! I freaking love this thing!
Congratulations. I ride a recumbent trike and I really love the freedom it provides me with HSP can be tough. Do you have a baclofen pump? I do and it really helps.
I have an upright trike too, but this one is proving to be much more fun! I don’t have a pump, I just use pills.
This was my first time getting into my hand cycle! I no longer do it this way though!
Is it a progressive disease?
Yes, it is.
I have a question for you…..do you have any difficulty initiating walking? I have had strangers open doors for me but since I can’t just start my walk like most people I feel like a bother.
Not always initiating walking, because I can be in the middle of walking and all of a sudden one of my feet/legs just gets “stuck.” Usually one leg will just not lift up off the ground and I really have to look down at my feet and concentrate to get my body to do what I need it to do. Because I move so slowly, when I see someone open the door for me I acknowledge it with a thank you and then once through the door I comment that I “really appreciate it” or a “thanks again,” “thanks have a nice day.” Extra thank you’s for their kind action ending needing extra time!
I grew up south of lake George and would go there just on a whim before being diagnosed with HSP. It is a great place to relax
Oh cool! It’s so beautiful and peaceful- even if the water is a bit brisk!
That is very cool, but I would never get myself in and out of it. No way!
It’s not easy, but I figured out a way to make it work for me! You either need flexibility, or someone to lower you into it.
That is awesome!
Yeah! Thanks Lance!