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!
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.
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 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.
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.
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 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.
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!!
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.😂
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!
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
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.
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 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!
