Love this! I've been hospitalized since oct 3rd for bedrest till my due date which is march 9th. When I arrived i told them I have mitochondrial myopathy which is what I was told is wrong with me but they knew w/me living a lifestyle freely as I did, not seeing specialists for over 14 years, & the particular areas I was only weak in they knew that had to be a wrong diagnosis. Finally on November 12th, this past thursday my dna results came in and I have the LGMD. Its such a relief now knowing.
Hey man! My name is rodrigo. I have limb girdle as well I pretty much walk and feel the same way you do. Haha. Its funny, I went to the university of Los Angeles and yeah they treated me the same way. Bunch of students moving me around and flexing and teating me and stuff. Life its hard as it is, with a muscle distrophy its juat worse. Hey, but this is not the end its just the beggining of a different kind of life. F it, lets just face this bitch.
@hereisjamz I have LGMD as well. I found out last summer and you seem to move exactly how i do. If im on the ground i cant stand up, my friend has to pick me up or if im setting on a low chair its hard to get up. People without md don't understand how rough this is. Every once in a while I get to thinking about it really hard and I break down. I wish you and everyone else with this disease the best of luck and in hopes that one day someone will find something to help us.
whats up jamie, im juan from mexico guadalajara im 36 years old in i have LGMD I field every day get in words my cituation is realy bad in mexico we dont have not even a free cheesseburger, jamie you understand my cituation. sorry but I asking for help Im field like in the midle the desert god blessyou brother thanks IMAIL juanbyules@yahoo.com.mx
Hi. I just like to say that your not alone having LGMD. I also have it and I've had it since i was about 4 and i'm 18 now. So don't give up and just keep living life! =)
@hereisjamz hey whats up im juan have LGMD I will like talk to you I star whent I was 17 now I getting words I hope you answer my massege thanks my brother never give up .....
we share a alot in common man, ive had it since i was about 15 or 16 also im 26 now. our lives look really similar.
i also used to play drums but mainly guitar now, i live in toronto now i moved here with my brother who helps me when i need help. I aim to become a director, editor and writer of my own movies. but im also really into music.
@theclockworks2 My brother helps me a lot too. Good luck on making your own movies. I want to go to school for that after I'm done with audio production. I'm glad you liked it.
Hey! Im a female who has LGMD & the timelines are very similar to mine, Im 27 now. Big thumbs up to putting this online & letting others see how it is to live with this disease! I havent quite reach that severity, but I know its around the corner. *Mirabel
Got it too, LGMD probably type 1b..but they dunno for sure yet.
Never been the sporty type,so that's not a biggy for me,as an artist i still can make stuff. I still find excuses why some things don't go well,maybe that's a coping mechanism!. Funny, i've been the ginieapig too for all kinds of docs..
hi .. I have LG Muscular Dystrophy too. I have had it for long long time but unfortunately i am in a chair now. It's tough but you soldier on and never give up, It is a tough life but looks like you got great friends, family and support.. I was a drummer too .. so rock on friend cheers
Great job, I think. You really get the point of being a guinne pig, I can relate to this! I come from a small town and they don't even know what to do for me. I'm thankful for the MDA near me, if it wasn't for them, I wouldn't know what to do. I too have LGMD and symptoms started around 20 something. Keep on keepin on.
this is awesome! i have lgmd as well
nhenn93 6 days ago
hey jamie s me your homeboy keep sendme masseges I will to talk to you one day,,, make realt this dream thanks.
yulesify 1 week ago
hey jimie is me juan you have facebook thanks brother
yulesify 1 month ago
@yulesify facebook/hereisjamz
hereisjamz 1 month ago
Man, you're awesome.
Teufelsding 1 month ago
@Teufelsding Thanks, you're sweet.
hereisjamz 1 month ago
Love this! I've been hospitalized since oct 3rd for bedrest till my due date which is march 9th. When I arrived i told them I have mitochondrial myopathy which is what I was told is wrong with me but they knew w/me living a lifestyle freely as I did, not seeing specialists for over 14 years, & the particular areas I was only weak in they knew that had to be a wrong diagnosis. Finally on November 12th, this past thursday my dna results came in and I have the LGMD. Its such a relief now knowing.
OoOminouOoo 3 months ago
Brilliant video. I have a different form of MD but I can relate to a lot of the stuff you talk about. Good luck with everything.
TheClairejp 5 months ago 2
@TheClairejp Thanks!
hereisjamz 5 months ago
Hey man! My name is rodrigo. I have limb girdle as well I pretty much walk and feel the same way you do. Haha. Its funny, I went to the university of Los Angeles and yeah they treated me the same way. Bunch of students moving me around and flexing and teating me and stuff. Life its hard as it is, with a muscle distrophy its juat worse. Hey, but this is not the end its just the beggining of a different kind of life. F it, lets just face this bitch.
leymeza1 6 months ago 2
@leymeza1 You said it best brother.
hereisjamz 5 months ago
@hereisjamz I have LGMD as well. I found out last summer and you seem to move exactly how i do. If im on the ground i cant stand up, my friend has to pick me up or if im setting on a low chair its hard to get up. People without md don't understand how rough this is. Every once in a while I get to thinking about it really hard and I break down. I wish you and everyone else with this disease the best of luck and in hopes that one day someone will find something to help us.
MrPurplewing 3 months ago
whats up jamie, im juan from mexico guadalajara im 36 years old in i have LGMD I field every day get in words my cituation is realy bad in mexico we dont have not even a free cheesseburger, jamie you understand my cituation. sorry but I asking for help Im field like in the midle the desert god blessyou brother thanks IMAIL juanbyules@yahoo.com.mx
yulesify 3 months ago
@yulesify Thank you, man. Wish I could help.
hereisjamz 1 month ago
Hi. I just like to say that your not alone having LGMD. I also have it and I've had it since i was about 4 and i'm 18 now. So don't give up and just keep living life! =)
Sesshoumaru157 8 months ago
@Sesshoumaru157 Hey, thanks, you too.
hereisjamz 5 months ago
Thanks for sharing. I have LGMD also.
victyler1 8 months ago 2
Great video. I have LGMD 2i and know how you feel! Keep going my friend and thank you for sharing!
speakfoundation 10 months ago
@speakfoundation Thanks!
hereisjamz 5 months ago
@hereisjamz hey whats up im juan have LGMD I will like talk to you I star whent I was 17 now I getting words I hope you answer my massege thanks my brother never give up .....
yulesify 1 month ago
@yulesify Yeah man, I'll talk to you.
hereisjamz 1 month ago
we share a alot in common man, ive had it since i was about 15 or 16 also im 26 now. our lives look really similar.
i also used to play drums but mainly guitar now, i live in toronto now i moved here with my brother who helps me when i need help. I aim to become a director, editor and writer of my own movies. but im also really into music.
it was cool to see your video thanx for that man.
theclockworks2 1 year ago
@theclockworks2 My brother helps me a lot too. Good luck on making your own movies. I want to go to school for that after I'm done with audio production. I'm glad you liked it.
hereisjamz 1 year ago
Hey! Im a female who has LGMD & the timelines are very similar to mine, Im 27 now. Big thumbs up to putting this online & letting others see how it is to live with this disease! I havent quite reach that severity, but I know its around the corner. *Mirabel
Mebako 1 year ago 3
Got it too, LGMD probably type 1b..but they dunno for sure yet.
Never been the sporty type,so that's not a biggy for me,as an artist i still can make stuff. I still find excuses why some things don't go well,maybe that's a coping mechanism!. Funny, i've been the ginieapig too for all kinds of docs..
wana053 1 year ago
i new that : )
Love,Shannon B.
to (hereisjamz)
burn087 1 year ago
hi .. I have LG Muscular Dystrophy too. I have had it for long long time but unfortunately i am in a chair now. It's tough but you soldier on and never give up, It is a tough life but looks like you got great friends, family and support.. I was a drummer too .. so rock on friend cheers
allindianallthetime 1 year ago
I always respected you i was younger and i didnt know wat it meant i want you to Know i love you Love,shannon to (hereisjamz)
burn087 1 year ago
@burn087 Im just messing with you. I love you too. You guys gotta come down and visit sometime.
hereisjamz 1 year ago
O.M.G you are so bravei respect you so much more , Shannon Burns
burn087 1 year ago
@burn087 what you never respected your cousin before? lol
hereisjamz 1 year ago
Thanks for the video response, I can relate!
ASide45 2 years ago
thanks for the comments :)
hereisjamz 2 years ago
nice vid. i have LGMD still try and manage to surf and kayak. Hopefully one day we will be cured and this stuff will be history. aloha
kinarak 2 years ago 3
@kinarak Amen.
Mebako 1 year ago 2
hay bro i have LGMD to and i am 18. great video i will add u i play guitar hero drums ill have to play the real thing thanks shane
TheLiljokerman 2 years ago
Great video
thanks
blomstersenter 2 years ago
Great job, I think. You really get the point of being a guinne pig, I can relate to this! I come from a small town and they don't even know what to do for me. I'm thankful for the MDA near me, if it wasn't for them, I wouldn't know what to do. I too have LGMD and symptoms started around 20 something. Keep on keepin on.
erdmancrew 2 years ago 5