Year number 2, June 2009, video of stair climbing with the diagnosis of Limb-Girdle Muscular Dystrophy 2A. Diagnosed with LGMD2A in 1995 and still stair climbing 14 years later.
I just came across your videos recently and i have to say, its such a breath of fresh air because my elder sister has the same condition, we live in Nigeria and for so long we couldn't understand what was wrong with her, and it was really hard for her and for our family as there was no diagnosis for her at first, until a few years ago, my sister is really strong and brave, i see her trying everything to survive, to achieve her dreams despite her physical challenge, that's why i am happy to see that she's not alone, even though u do not wish this condition on anyone, but knowing that u're not alone is always a relief, you're also strong and brave and i can't imagine how hard it is for you going through your daily activities with this condition but keep being strong, u're inspiring a lot of people and anytime u feel tired and feeling down, just remember that you mean something to a lot of people, you matter. Keep going. Cheers
Wow. What a workout. You are a warrior and a leader and a role model. It may have taken almost 5 minutes to climb those stairs but it also took less than 5 minutes to earn my total respect. Total Respect. Nice job sir.
Thank you John for showing us people in the geneal public the way your climbing stairs, something we all do automatically without thinking. Please John nerver be ashamed to show us your daily strenght to do usual common actions. You're my Champion my friend, you really are and thank you again for all your efforts to put these videos on your amazing site man. God bless you allways my friend. Best regards & Happy Easter, JJ
I have non-polio poliomyelitis and I have to wear braces to keep my knees straight, I know how much of a struggle to climb steps. Keeping going you did great.
Wow! I am truly amazed-though I know this is now normal for you. I have LGMD I was diagnosed when I was 21, now Im 27 & I have to say its very difficult because its ever changing. Anyways...thanks for showing this to the world-I dont (yet) have the guts to do this!
Hi there John,I want to say,dude you make me want to never give up! I was diagnosed with F.S.H.D earlier on in 2011 and it's been hard on me! I can't run,can't get up from the ground with out having to use something to help get up off the floor and I find it super hard to climb stairs and there is a bunch of other stuff also! Now that I seen your video Im gonna try to take the stairs everyday.I was wondering how are you with going down stairs? Going down is alitte easier that's for sure!
See, here is something that people who don't have some type of chronic disorder don't understand. When you do have a chronic disorder, you aren't going to lay around in bed all day unless you have absolutely no choice. Life still goes on, you have to do your best to go on with it. John, I hope you realize, you are far stronger and far more ambitious than the average able bodied person!
I have Becker Myotonia Congenita. Getting up stairs was always ok even though my legs would lock at the beginning. Going down can be a bit treacherous though.
para subir mejor las escaleras, es mejor poner un brazo en la baranda de la escalra y la otra en la pared y hacer un poco de fuerza. o poner dos barandas en la escalera t subir hagarrado.
I go up the stairs sitting on the step and then lifting myself up to the next one. Maybe you want to try it? Might be faster? Just trying to help!!! Good luck! 😄
Thank you Anya for the suggestions but I cannot go up the stairs on my butt like you say. There was a time when I could but that moment has passed. THank you for offering help...I appreciate that.
No prob! I guess it depends on your upper body strength as to if you could do that! I have no use of my legs or trunk so I do it that way, but I have full strength in my arms. Thanks for replying man! And you're doing a great job! I just mastered going up the stairs. (14-year old w/ quadriplegia)
I admire who refuse to let other's control what they do,people are curious by nature,that's who we are,but staring at people for more then a few seconds is rude.I have Becker's Myotonia Congenita,while I don't have the severe loss of control like you,I'm not good at climbing stairs.This is someone who would benefit from a exosuit,while early in development,in time,bed ridden people will through the use of software and a wearable suit walk again,drive a car,do everything a normal person can do.
someday we will go into the womb and make the fix before the child is born. But with technology moving really fast, I see a exo suit that would allow those of us with movement disorders to move like a normal person, using nerves that are there to control the movement. Check out the incredible brain activated leg, being tested now, it is truly amazing, you think about walking or bending and it moves . About 3 years more years of testing, before it is available. I'm excited.
I was gonna post a comment saying what a useless video hes just a normal guy timeing how fast he go's up stairs WOW but then i saw the description and the walk now i feel bad
I just came across your videos recently and i have to say, its such a breath of fresh air because my elder sister has the same condition, we live in Nigeria and for so long we couldn't understand what was wrong with her, and it was really hard for her and for our family as there was no diagnosis for her at first, until a few years ago, my sister is really strong and brave, i see her trying everything to survive, to achieve her dreams despite her physical challenge, that's why i am happy to see that she's not alone, even though u do not wish this condition on anyone, but knowing that u're not alone is always a relief, you're also strong and brave and i can't imagine how hard it is for you going through your daily activities with this condition but keep being strong, u're inspiring a lot of people and anytime u feel tired and feeling down, just remember that you mean something to a lot of people, you matter. Keep going. Cheers
so many of us take walking for granted. you're incredible. thank you for sharing your experience with me.
Wow. What a workout. You are a warrior and a leader and a role model. It may have taken almost 5 minutes to climb those stairs but it also took less than 5 minutes to earn my total respect. Total Respect. Nice job sir.
Thank you John for showing us people in the geneal public the way your climbing stairs, something we all do automatically without thinking. Please John nerver be ashamed to show us your daily strenght to do usual common actions. You're my Champion my friend, you really are and thank you again for all your efforts to put these videos on your amazing site man. God bless you allways my friend. Best regards & Happy Easter, JJ
If ANYONE dislikes this video...so help me God.
There is nothing more wonderful than to see somebody so strong.....
this is a beautiful thing alot of people would give up but you keep going i know you inspire many people
I was diagnosed three years ago..i'm terrified of stairs, i guess i have to overcome and try some...you've been very encouraging, thanx alot
This is true determination.John .. yoiu clearly have loads of guts.
Much admiration from England
Keep going Sir...God Bless you
Thank you
I have non-polio poliomyelitis and I have to wear braces to keep my knees straight, I know how much of a struggle to climb steps. Keeping going you did great.
tengo distrosia muscualr , me das tu face para hablar?estas bonita
dude i present all mi respects on you
Wow! I am truly amazed-though I know this is now normal for you. I have LGMD I was diagnosed when I was 21, now Im 27 & I have to say its very difficult because its ever changing. Anyways...thanks for showing this to the world-I dont (yet) have the guts to do this!
Hi there John,I want to say,dude you make me want to never give up! I was diagnosed with F.S.H.D earlier on in 2011 and it's been hard on me! I can't run,can't get up from the ground with out having to use something to help get up off the floor and I find it super hard to climb stairs and there is a bunch of other stuff also! Now that I seen your video Im gonna try to take the stairs everyday.I was wondering how are you with going down stairs? Going down is alitte easier that's for sure!
WOW - Thank you. That took courage.
See, here is something that people who don't have some type of chronic disorder don't understand. When you do have a chronic disorder, you aren't going to lay around in bed all day unless you have absolutely no choice. Life still goes on, you have to do your best to go on with it. John, I hope you realize, you are far stronger and far more ambitious than the average able bodied person!
You end saying "You must be doing something good."
John, please KNOW that you ARE indeed something good .. :)
I have Becker Myotonia Congenita. Getting up stairs was always ok even though my legs would lock at the beginning. Going down can be a bit treacherous though.
Good luck man
para subir mejor las escaleras, es mejor poner un brazo en la baranda de la escalra y la otra en la pared y hacer un poco de fuerza. o poner dos barandas en la escalera t subir hagarrado.
at the last stair i was wondering how you were going to do it---yep, backwards just like moi :) did greatt!!!
I go up the stairs sitting on the step and then lifting myself up to the next one. Maybe you want to try it? Might be faster? Just trying to help!!! Good luck! 😄
Thank you Anya for the suggestions but I cannot go up the stairs on my butt like you say. There was a time when I could but that moment has passed. THank you for offering help...I appreciate that.
No prob! I guess it depends on your upper body strength as to if you could do that! I have no use of my legs or trunk so I do it that way, but I have full strength in my arms. Thanks for replying man! And you're doing a great job! I just mastered going up the stairs. (14-year old w/ quadriplegia)
@@anyalopez8739 hello anya
looks painful not the illness but the walking up the stairs
I admire who refuse to let other's control what they do,people are curious by nature,that's who we are,but staring at people for more then a few seconds is rude.I have Becker's Myotonia Congenita,while I don't have the severe loss of control like you,I'm not good at climbing stairs.This is someone who would benefit from a exosuit,while early in development,in time,bed ridden people will through the use of software and a wearable suit walk again,drive a car,do everything a normal person can do.
Oki
WE are such same problem(
I am ashamed too . I have muscular dystrophy.
someday we will go into the womb and make the fix before the child is born. But with technology moving really fast, I see a exo suit that would allow those of us with movement disorders to move like a normal person, using nerves that are there to control the movement. Check out the incredible brain activated leg, being tested now, it is truly amazing, you think about walking or bending and it moves . About 3 years more years of testing, before it is available. I'm excited.
Maybe
Si
I was gonna post a comment saying what a useless video hes just a normal guy timeing how fast he go's up stairs WOW but then i saw the description and the walk now i feel bad
We have same problem(all
最咁要身体健康
我們同病相憐，加油 from taiwan
:)
Like, even though your muscles are hosed, you're an awesome dude. Never give up. All the best. Way to go, babe!