I'm 20 years old, and I just got the diagnosis of LGMD2A last month. It's nice to see someone who's like me. I totally understood when you mentioned not wanting to become reliant on the walking stick. I try to keep doing things as normal as I can since I've realized, whenever I avoid using my muscles, that only makes them weaken faster. I also have the same trouble keeping my stomach from going first when I walk. You're like an inspiration to me really; I've seen your videos from years ago and seeing that you're still walking motivates me. I'm a firm believer that aerobic exercise is helping me keep my endurance and strength. Have you tried any aerobic exercises?
Thank you for your kind words. I use to go to a pool to exercise but the water was to cold despite it being 88 degrees. So now I just stick to ground exercises and try to do them every day.
Hello, my name is Kristina, I'm from Ukraine Living in France. I also have myopathy LGMD R1/2A. the first symptoms were at the age of 11, now I'm 33. I walk around the house with the help of a cane, but I can no longer walk outside without the help of my family. I watched the video here 8 years ago and now I saw an article with you in a magazine LGMD news 😊 I am glad to see that you can still move around the apartment a little and I want to say thank you for your exercises❤️
Hello. Thank you for watching my videos and hopefully they have been of some help to you over these years you’ve lived with Lgmd. Yes I’ve been fortunate to be able to continue to walk around. Although I will say I have noticed a difficulty in walking over the past few months. It is what it is. Hopefully we’ll all see some treatments soon and can regain our strength! All the best to you and keep moving as best as you can!
@@JohnGraybill I really hope for genetic therapy, which is now actively developing. I hope in the next 3 years they will be able to find a way to help all of us🤞🏻✨
Hi, im from India, My name is Shezan, Im now 35, I have LGMD too it started exactly after I did some gym ( was there before too but not that bad ) after that got a bit worse but I can still walk without a stick the main area where I have weakness is my heap area . Is there a community for LGMD ?? Can we (LGMD people) get connected to each other?
hello recently i knew that friend of mine has a becker muscular dystrophy.He is in late twenties and has no big problem in everyday life yet, however I was worried about the progression of his disease. I was searching every information and treatments of BMD and found your channel and it really help me understand muscular dystrophy. Thank you for sharing your challenges for such a long time and I really appreciate your efforts. Hope you have a nice day today！
Thank you for your kind words. Becker MD is different from what I have. Also, I believe Becker has a slower progression which makes the disease less debilitating. Good luck in your searching. And thanks for watching.
Thank you for your encouragement. Have you looked into the organization “The Jain Foundation?” They are an organization who focuses on LGMD2B and may be a great resource for you.
Thank you for doing these videos. I don’t have LGMD but rather Bethlem CMD but i see some similarities in how I move around. One tip you posted in a video about moving around in bed has helped me actually. I hadn’t occurred to me to use one arm to pull the other to help me roll. 😁 I’m considering doing some videos like yours to show progression as well. It might help people to see if these.
Thanks for watching. Have you reached out the the group "Coalition to Cure Calpain 3"? They are an organization here in the USA but they have a registry that serves people all over the world. Highly recommend you joining their registry.
John, thanks for these. So helpful. My son is 16 and has just been diagnosed. He only has elevated CK and we tested him just because his legs swell when he runs. Other than that he walks “normal” and is very strong. He’s has no pain. He just can’t exercise without exhausting quick. He’s 16 (almost 17). How long after your diagnoses did you being to notice muscle weakness?
I began noticing muscle weakness when I was in 7th grade. I wrestled in school but found it hard to walk up steps when practice was over. I thought I was out of shape so I pushed myself. I had difficulty running also. I could not run the mile in gym class. My legs just felt so heavy. I wasn’t diagnosed with lgmd until I was in 12th grade, so that was 5 years after noticing I ran differently and struggled after wrestling practice. Over the course of 26 years of having lgmd I notice the weakness isn’t constant. So days I feel great while other days I don’t. But I will say I never had my legs swell after running. Be sure to get a genetic test to be sure it’s muscular dystrophy and not something else. And if your doctor feels there is no need to because there is no treatment then get another doctor. It’s very important to have the correct diagnosis. Nowadays there are genetic tests you can get through saliva swabs. The Jain Foundation is one organization that helps people get a diagnosis. Do you live in USA?
I’m diagnosed with md in 2008,when I was about 8years now I’m 21 and I’m very sad watching you like this because I have made my mind that I’m not gonna live that longer so,I leave doing anything and lying all day on my bed while playing games and watching movie’s. I have to leave my study because of disease,it’s really hard to keep up with people that’s why I take last risk stem cell therapy and even after that their no difference and my hope is totally crushed. Before this sometimes I was wondering why people suicide but after loosing life,friends,achievements everything I’m also became one of them always thinking about how to end my life.
Merhaba lgmd2a hastasıyım evli 2 kız çocuk sahibiyim 3 yaşında ve 10 aylik kızlarım var korkuyorum kızlarımda lgmd olma olacağı var mı onu sormak istiyorum yardımcı olurmusunuz
Hi every1 all lgmd 2a is not by everybody the same i walk like a pinguïn my kids told me hahaha and im 35 now But john there are a lot of docks how can lern off your vids
I'm 20 years old, and I just got the diagnosis of LGMD2A last month. It's nice to see someone who's like me. I totally understood when you mentioned not wanting to become reliant on the walking stick. I try to keep doing things as normal as I can since I've realized, whenever I avoid using my muscles, that only makes them weaken faster. I also have the same trouble keeping my stomach from going first when I walk. You're like an inspiration to me really; I've seen your videos from years ago and seeing that you're still walking motivates me. I'm a firm believer that aerobic exercise is helping me keep my endurance and strength. Have you tried any aerobic exercises?
Thank you for your kind words. I use to go to a pool to exercise but the water was to cold despite it being 88 degrees. So now I just stick to ground exercises and try to do them every day.
Hello, my name is Kristina, I'm from Ukraine
Living in France. I also have myopathy LGMD R1/2A.
the first symptoms were at the age of 11, now I'm 33. I walk around the house with the help of a cane, but I can no longer walk outside without the help of my family.
I watched the video here 8 years ago and now I saw an article with you in a magazine LGMD news 😊
I am glad to see that you can still move around the apartment a little and I want to say thank you for your exercises❤️
Hello. Thank you for watching my videos and hopefully they have been of some help to you over these years you’ve lived with Lgmd.
Yes I’ve been fortunate to be able to continue to walk around. Although I will say I have noticed a difficulty in walking over the past few months. It is what it is. Hopefully we’ll all see some treatments soon and can regain our strength!
All the best to you and keep moving as best as you can!
@@JohnGraybill I really hope for genetic therapy, which is now actively developing. I hope in the next 3 years they will be able to find a way to help all of us🤞🏻✨
Hi, im from India, My name is Shezan, Im now 35, I have LGMD too it started exactly after I did some gym ( was there before too but not that bad ) after that got a bit worse but I can still walk without a stick the main area where I have weakness is my heap area . Is there a community for LGMD ?? Can we (LGMD people) get connected to each other?
hello recently i knew that friend of mine has a becker muscular dystrophy.He is in late twenties and has no big problem in everyday life yet, however I was worried about the progression of his disease. I was searching every information and treatments of BMD and found your channel and it really help me understand muscular dystrophy. Thank you for sharing your challenges for such a long time and I really appreciate your efforts. Hope you have a nice day today！
Thank you for your kind words. Becker MD is different from what I have. Also, I believe Becker has a slower progression which makes the disease less debilitating. Good luck in your searching. And thanks for watching.
Hello! it is good to hear that you can still walk. I've got LGMD2B and it was diagnosed nearly three years ago. Keep fighting!
Thank you for your encouragement. Have you looked into the organization “The Jain Foundation?” They are an organization who focuses on LGMD2B and may be a great resource for you.
@@JohnGraybill thank you for the info, will check It out
Great to see you still going and walking! You are an inspiration! Take good care.
Thank you!
Hi john, I admire you. Your videos inspire many people. I wish you the best!
Hello Magali. Thank you for watching and your kind words. I wish you the best too!
@@JohnGraybill can I connect to you??
I'm 52 years old, and I got the diagnosis of LGMD2A (25 years ago). Thank you .
Thank you for doing these videos. I don’t have LGMD but rather Bethlem CMD but i see some similarities in how I move around. One tip you posted in a video about moving around in bed has helped me actually. I hadn’t occurred to me to use one arm to pull the other to help me roll. 😁 I’m considering doing some videos like yours to show progression as well. It might help people to see if these.
Are there any treatments to LGMD??or
Thank you for sharing your challenges. I have exacly the same muscular dystrophy (Limb girdle 2A). I'm from Brazil and I'm 23 years old.
Thanks for watching.
Have you reached out the the group "Coalition to Cure Calpain 3"? They are an organization here in the USA but they have a registry that serves people all over the world. Highly recommend you joining their registry.
@@JohnGraybill I didn't, but i will search right now. Thank you!
John, thanks for these. So helpful. My son is 16 and has just been diagnosed. He only has elevated CK and we tested him just because his legs swell when he runs. Other than that he walks “normal” and is very strong. He’s has no pain. He just can’t exercise without exhausting quick. He’s 16 (almost 17). How long after your diagnoses did you being to notice muscle weakness?
I began noticing muscle weakness when I was in 7th grade. I wrestled in school but found it hard to walk up steps when practice was over. I thought I was out of shape so I pushed myself. I had difficulty running also. I could not run the mile in gym class. My legs just felt so heavy. I wasn’t diagnosed with lgmd until I was in 12th grade, so that was 5 years after noticing I ran differently and struggled after wrestling practice. Over the course of 26 years of having lgmd I notice the weakness isn’t constant. So days I feel great while other days I don’t. But I will say I never had my legs swell after running. Be sure to get a genetic test to be sure it’s muscular dystrophy and not something else. And if your doctor feels there is no need to because there is no treatment then get another doctor. It’s very important to have the correct diagnosis. Nowadays there are genetic tests you can get through saliva swabs. The Jain Foundation is one organization that helps people get a diagnosis. Do you live in USA?
Do you feel like electrical signals shooting out your fingers when you have twinges or spasms?
@@SylviaBorsch I do not experience what you are asking about. Have you brought this up to your numerologist?
Really proud of you man my wife just died from it
Thank you and sorry to hear she passed away.
Thank you for update. have you changed your stretching routine from your last video?
Uploading the stretches soon. Thanks for asking
Thanks sir really inspiring ☺️
I’m diagnosed with md in 2008,when I was about 8years now I’m 21 and I’m very sad watching you like this because I have made my mind that I’m not gonna live that longer so,I leave doing anything and lying all day on my bed while playing games and watching movie’s.
I have to leave my study because of disease,it’s really hard to keep up with people that’s why I take last risk stem cell therapy and even after that their no difference and my hope is totally crushed.
Before this sometimes I was wondering why people suicide but after loosing life,friends,achievements everything I’m also became one of them always thinking about how to end my life.
Merhaba lgmd2a hastasıyım evli 2 kız çocuk sahibiyim 3 yaşında ve 10 aylik kızlarım var korkuyorum kızlarımda lgmd olma olacağı var mı onu sormak istiyorum yardımcı olurmusunuz
Make a new video
Some1 from the netherlands btw
Hello
John sir, Medicine has any potential in the future...!
I don't know the answer to that statement. But, I hold out hope that something will come along and make us more mobile.
Hi every1 all lgmd 2a is not by everybody the same i walk like a pinguïn my kids told me hahaha and im 35 now
But john there are a lot of docks how can lern off your vids
Thank you!
Look into gene therapy