really have appreciated the videos from you and from brad williams, i was diagnosed in 2020 with lgmd at 23 and i had no idea how it would be abd thought itd be a death sentence but your videos helped me understand the limitations i may face but know i have a long life ahead of me and theres always solutions to some of the issues we may face even if we gotta think out of the box. cheers mate and i hope you have a good day
@@jammiesjamjam thank you for that. You were diagnosed later in age than me and so I’d assume your path is probably less severe than mine. But life goes on and so must we. All the best to you and don’t allow this disease to define who you are! Thanks for watching all these years.
Cure is mantra ✨️ from India 🇮🇳 from millions of years these types of things are not so common in brahaman verga since they have millions of vedic mantra and rituals which gives the way that get rid of life style disease
@antoniam9571 bol bam bam ka mantra Budha graha Budhaditaya yoga 🧘♀️ makar sankranti yoga 🧘♀️ Give water to the rising sun per day and note through out the year that you do not use amla tulsi tamba ka lota in Sunday Avoid the salty 🧂 things on Sunday and use the food which have no added salt from unnatural sources
@@Kblessing-jg you’re welcome. I never toe walked but know some who have and they tended to be weaker. My heart goes out to you and your nephew. Hopefully a cure is incoming soon.
yes, yes it is. I think very few people know about muscular dystrophy, aside from the people you see with Beckers or DMD or SMA that are in wheelchairs their entire life. it is a fucking horrible disease. in my opinion one of the worst because it never goes away, you still maintain 'sanity,' and youre in pain but cant even be prescribed opiates to treat it.
I have a RUclips page documenting just about every year of my disease starting in 2008 up until now. I’ve have Lgmd for 30 years and the progression has been quite slow. If you want to see what I was like nearly 17 years ago, go to my RUclips page and look at the playlists. They are organized in years of 3.
Hello. I also have lgmd2a. I read an article explaining the benefits of growth hormone for lgmd2a. Have you ever used it? or are you using any other medication? Finally, do you think that gene therapy studies are progressing too slowly? I appreciate your fight against the disease. Sorry for the bad English, I use translate
Hello. I do not do any type of therapies. I have not heard about growth hormones and at this stage I would not take them unless there has been extensive research into it. You have to think about the effects of such a treatment if it does not work and what that could do to you. I haven’t read or looked into this but rather giving you my personal opinion. I think gene therapy is moving slowly but I know nothing about it or how it could work. Instead, I enjoy my life to best I can. I don’t put my happiness into being cured anymore. Enjoy what you have now and when the cure or treatment comes then your life will be twice as nice as it is.
I don’t know how to lose weight as I’m fairly thin and have always been. Maybe try eating less portions or skipping one meal a day. I really don’t know what’s best for you but staying active as best as you can will help keep the weight steady.
really have appreciated the videos from you and from brad williams, i was diagnosed in 2020 with lgmd at 23 and i had no idea how it would be abd thought itd be a death sentence but your videos helped me understand the limitations i may face but know i have a long life ahead of me and theres always solutions to some of the issues we may face even if we gotta think out of the box. cheers mate and i hope you have a good day
@@jammiesjamjam thank you for that. You were diagnosed later in age than me and so I’d assume your path is probably less severe than mine. But life goes on and so must we. All the best to you and don’t allow this disease to define who you are! Thanks for watching all these years.
Hey! Very curious to hear when and how your symptoms started. I am also 23 right now and would like to hear more :) Keep it up and best wishes!
God bless you brother I pray for your health 🙏
Thank you for that!
Would love to see you get to that point. Best wishes!
Thank you!
Cure is mantra ✨️ from India 🇮🇳 from millions of years these types of things are not so common in brahaman verga since they have millions of vedic mantra and rituals which gives the way that get rid of life style disease
Você pode me orientar qual mantra?
@antoniam9571 write it in hindi
@antoniam9571 bol bam bam ka mantra
Budha graha
Budhaditaya yoga 🧘♀️
makar sankranti yoga 🧘♀️
Give water to the rising sun per day and note through out the year that you do not use amla tulsi tamba ka lota in Sunday
Avoid the salty 🧂 things on Sunday and use the food which have no added salt from unnatural sources
Hi Bill, Thanks for inspiring us. I have my nephew who's an orphan, he's 10 years now. But he can't stand from the ground. And he uses tip toe walking
@@Kblessing-jg you’re welcome. I never toe walked but know some who have and they tended to be weaker. My heart goes out to you and your nephew. Hopefully a cure is incoming soon.
@@JohnGraybill Thank you so much. My Nephew could be having Duchenne muscular dystrophy
My dad has this disease and it is so terrible
yes, yes it is. I think very few people know about muscular dystrophy, aside from the people you see with Beckers or DMD or SMA that are in wheelchairs their entire life. it is a fucking horrible disease. in my opinion one of the worst because it never goes away, you still maintain 'sanity,' and youre in pain but cant even be prescribed opiates to treat it.
My son and my son also have this seak. I know how difficult is..
Pray for God my friend I will pray fod you.
For how many years have you had the disease and in how much time have you progressed with this disease?
I have a RUclips page documenting just about every year of my disease starting in 2008 up until now. I’ve have Lgmd for 30 years and the progression has been quite slow. If you want to see what I was like nearly 17 years ago, go to my RUclips page and look at the playlists. They are organized in years of 3.
Hello. I also have lgmd2a. I read an article explaining the benefits of growth hormone for lgmd2a. Have you ever used it? or are you using any other medication? Finally, do you think that gene therapy studies are progressing too slowly? I appreciate your fight against the disease. Sorry for the bad English, I use translate
Hello. I do not do any type of therapies. I have not heard about growth hormones and at this stage I would not take them unless there has been extensive research into it. You have to think about the effects of such a treatment if it does not work and what that could do to you. I haven’t read or looked into this but rather giving you my personal opinion. I think gene therapy is moving slowly but I know nothing about it or how it could work. Instead, I enjoy my life to best I can. I don’t put my happiness into being cured anymore. Enjoy what you have now and when the cure or treatment comes then your life will be twice as nice as it is.
good bless you brother you are great warrior love from india ❤❤❤
@@shivanshusoni197 thank you for that! I appreciate your words.
I am from kashmir watching your videos similar disease
Yes
How can I lose weight I also have lgmd but I have gain a lot of weight can you plz recommend something .
I don’t know how to lose weight as I’m fairly thin and have always been. Maybe try eating less portions or skipping one meal a day. I really don’t know what’s best for you but staying active as best as you can will help keep the weight steady.
Intermittent fasting and ketogenic diet. See a naturalpathic dr. This is what I do. I have LGMD
💪🏼🙌🏼🙏🏼🤍
Reverse
You got it!