Watching u walk is like looking in the mirror well when I could walk. We move exactly the same way. I have lgmd. U give me inspiration to not give up. I don't know how u are now hopefully well? I'm definitely in worse shape than you are at the time of this video. It sucks. Life is hard. U handle the situation with a lot of class and self respect. I feel your pain. Always hoping there will be some kinda of treatment before I've had enough.. Hope you are well and keep on educating for others that are afflicted and those that are not. 👊
Thank you for that Timothy. The best advice I can give you is to live one day at a time. I've found that when I look to far into the unknown future that is where I can get depressed.
Good video and good tips. I too did one video similar to yours, but I can't place legs first because I crossed that stability.. I can't step my legs so I placed first my butt. Kindly check how I sitting in the car
John, I like your videos really good videos my son has been diagnosed with this disease and he want to drive the car he dream car. he is 12 year old if he come to 18 years can he drive the car like the normal people.😢
Thank you for watching. I was diagnosed at the age of 17, currently I am 45 years old and I still drive. So yes it’s possible for him to drive. I have LGMD2A which typically is a slow rate of loss. If your son has the same diagnosis then it’s possible for him to drive. But if he has a different type then I’m not sure how the disease will effect him.
@@JohnGraybill thank you John for the reply the doctor told his type is 2D this type also slow progressive and the doctor told us also he can married and make family I wish for you and all the people has the same disease speedy recovery
I currently do not have any trouble with pressing the pedals down. But I have noticed when turning, going around a turn that pressing the brake is a bit more difficult.
John I faced the same problem in turning then I found a solution.... tie your both leg thigh with a belt, You can use any regular (weist belt) it will give support in turning. And you will drive more easily.
I just found your videos! I have lgmd as well, alot of the same "moves" you use, i do as well...question not regarding this video, but another...can u explain the belt when u stand and sit? When i rise from a chair/couch, i found my legs must b spread wide, and my hands go to floor to catch me...then i need other furniture to "walk" myself up...so how does the belt help you?? Another question, did you, or do you do physical therapy? If so, what have you found most helpful in exercises for lgmd?
I am familiar with your approach to getting up as I use to do it that way. The belt method may not be one you can use at the moment. But the belt helps keep my legs together so I can use my legs to push against it thus having the strength to get myself up to a table, where I will then push myself up. Have you watched the belt method video? It will show you what I mean.As far as physical therapy goes, yes I had PT years ago. I basically do stretches each day to keep myself loose. I have some stretching videos on my page that show you what stretches I do. Do you know what type of LGMD you have?Thank you for watching the videos!
hi john bro! I'm Gurusanjeev from india. I'm just 21 years old. I'm also affected in Muscular dystrophy. My health conditions are too weak. I dont know what to do? i'm want to protect myself. please give some ideas. I'm expecting you bro. i want to improve my health condtions. Give some improving techniques like physical exercise, or food suggestions. Im waiting for your reply bro!
Here is what I do. I stretch every day to keep my muscles loose...I have stretching videos on RUclips here. I eat organic foods only. Stay away from dairy. Do not eat processed foods but rather cook all my food. I don't do drugs, drink alcohol. And most importantly I try to keep a positive mindset. I live each day mindfully and that has helped me navigate through my MD. Hope that helps.
Look up phenol on CDC. Now look up Hitler and phenol on wikipedia. Auto immune disease's don't exist! They say it's a diease, but it's all nerve damage! Causes (supposedly)Alzheimer's, dementia, Parkinson's, diabetes, high blood pressure, stroke, heart attack, schizophrenia, suicidal thoughts, MS, lupus, HIV, asthma, renal failure, extreme fatigue, cancer, dipg,lymphoma, thick toenails, arthritis, asthma, eczema, psoriasis, blindness, deafness, weight gain and weight loss all auto immune disease's! Not lying to you! I was diagnosed in 2016 with MS, neuropathy, brain infection, part of my brain missing and on my way to be a diabetic! I was injected with phenol for four years and six months. I was lied to. I'm almost 100%. You can have my records!!! This is how dogs get diabetes, hip problems and other health issues!!! 284 pages on CDC website! Under other names in majority of everything we eat and touch including soap, ink,charcoal, colonge, perfume, makeup, toothpaste etc... not lying to you! Maurice Battle of North Aurora Illinois. Jesus Walks
@@JohnGraybill yes! It sounds unbelievable! It's just nerve damage! Phenol does damage to your nerves it mimics a disease!The truth!!! GetPlease look it up! I was diagnosed with MS, neuropathy, brain infection, part of my brain missing and on my way to be a diabetic! Please believe me and look for yourself! This will grow out of your body. Do you have excessive tartar, brown spots on hands or feet, thick toenails, eczema, psoriasis, arthritis, dry mouth that's just some of the diseases I had! You can have records! Ask doctor for records and MSDS. Not lying just want you to look. It's a nerve blocker!
Watching u walk is like looking in the mirror well when I could walk. We move exactly the same way. I have lgmd. U give me inspiration to not give up. I don't know how u are now hopefully well? I'm definitely in worse shape than you are at the time of this video. It sucks. Life is hard. U handle the situation with a lot of class and self respect. I feel your pain. Always hoping there will be some kinda of treatment before I've had enough.. Hope you are well and keep on educating for others that are afflicted and those that are not. 👊
Thank you for that Timothy. The best advice I can give you is to live one day at a time. I've found that when I look to far into the unknown future that is where I can get depressed.
Good video and good tips. I too did one video similar to yours, but I can't place legs first because I crossed that stability.. I can't step my legs so I placed first my butt. Kindly check how I sitting in the car
John, I like your videos really good videos my son has been diagnosed with this disease and he want to drive the car he dream car. he is 12 year old if he come to 18 years can he drive the car like the normal people.😢
Thank you for watching. I was diagnosed at the age of 17, currently I am 45 years old and I still drive. So yes it’s possible for him to drive. I have LGMD2A which typically is a slow rate of loss. If your son has the same diagnosis then it’s possible for him to drive. But if he has a different type then I’m not sure how the disease will effect him.
@@JohnGraybill thank you John for the reply the doctor told his type is 2D this type also slow progressive and the doctor told us also he can married and make family I wish for you and all the people has the same disease speedy recovery
hello john what about pressing pedals? its good? mostly pressing brake in corners because of car tilting. Sorry for my english.
I currently do not have any trouble with pressing the pedals down. But I have noticed when turning, going around a turn that pressing the brake is a bit more difficult.
John I faced the same problem in turning then I found a solution.... tie your both leg thigh with a belt, You can use any regular (weist belt) it will give support in turning. And you will drive more easily.
To explain, the muscles that a person uses to push their foot down is different than the muscles used to climb into a car.
GREAT JOB John C Grabel
I just found your videos! I have lgmd as well, alot of the same "moves" you use, i do as well...question not regarding this video, but another...can u explain the belt when u stand and sit? When i rise from a chair/couch, i found my legs must b spread wide, and my hands go to floor to catch me...then i need other furniture to "walk" myself up...so how does the belt help you??
Another question, did you, or do you do physical therapy? If so, what have you found most helpful in exercises for lgmd?
I am familiar with your approach to getting up as I use to do it that way. The belt method may not be one you can use at the moment. But the belt helps keep my legs together so I can use my legs to push against it thus having the strength to get myself up to a table, where I will then push myself up. Have you watched the belt method video? It will show you what I mean.As far as physical therapy goes, yes I had PT years ago. I basically do stretches each day to keep myself loose. I have some stretching videos on my page that show you what stretches I do. Do you know what type of LGMD you have?Thank you for watching the videos!
@@JohnGraybill i was tested in the last year, and did not fall under any "known type" so all thwy know is it is lgmd.
Who tested you? Where do you live? In USA?
@@JohnGraybill i do. The MDA tested my saliva.
Have you joined my LGMD Facebook group?
Hi John! Do you use hand drive? Could you please make a video about it? Thanks for sharing your experience.
Thank you for watching the video. I do not know what you mean when you say "hand drive"? Can you explain this?
John Graybill II, I mean, that for break and acceleration you use arms, not legs.
I get it now. No I use my legs still to drive. I do not have any hand controls for driving.
hi john bro! I'm Gurusanjeev from india. I'm just 21 years old. I'm also affected in Muscular dystrophy. My health conditions are too weak. I dont know what to do? i'm want to protect myself. please give some ideas. I'm expecting you bro. i want to improve my health condtions. Give some improving techniques like physical exercise, or food suggestions. Im waiting for your reply bro!
Here is what I do. I stretch every day to keep my muscles loose...I have stretching videos on RUclips here. I eat organic foods only. Stay away from dairy. Do not eat processed foods but rather cook all my food. I don't do drugs, drink alcohol. And most importantly I try to keep a positive mindset. I live each day mindfully and that has helped me navigate through my MD. Hope that helps.
John Graybill II yeah sure brother. I'll try to follow your way bro.
Get your records and MSDS from doctor's office!
I do not understand what you mean. Can you explain?
Look up phenol on CDC. Now look up Hitler and phenol on wikipedia. Auto immune disease's don't exist! They say it's a diease, but it's all nerve damage! Causes (supposedly)Alzheimer's, dementia, Parkinson's, diabetes, high blood pressure, stroke, heart attack, schizophrenia, suicidal thoughts, MS, lupus, HIV, asthma, renal failure, extreme fatigue, cancer, dipg,lymphoma, thick toenails, arthritis, asthma, eczema, psoriasis, blindness, deafness, weight gain and weight loss all auto immune disease's! Not lying to you! I was diagnosed in 2016 with MS, neuropathy, brain infection, part of my brain missing and on my way to be a diabetic! I was injected with phenol for four years and six months. I was lied to. I'm almost 100%. You can have my records!!! This is how dogs get diabetes, hip problems and other health issues!!! 284 pages on CDC website! Under other names in majority of everything we eat and touch including soap, ink,charcoal, colonge, perfume, makeup, toothpaste etc... not lying to you! Maurice Battle of North Aurora Illinois. Jesus Walks
@@JohnGraybill it's a nerve blocker!
Are you saying Phenol is the cause for all these diseases and Muscular Dystrophy?
@@JohnGraybill yes! It sounds unbelievable! It's just nerve damage! Phenol does damage to your nerves it mimics a disease!The truth!!! GetPlease look it up! I was diagnosed with MS, neuropathy, brain infection, part of my brain missing and on my way to be a diabetic! Please believe me and look for yourself! This will grow out of your body. Do you have excessive tartar, brown spots on hands or feet, thick toenails, eczema, psoriasis, arthritis, dry mouth that's just some of the diseases I had! You can have records! Ask doctor for records and MSDS. Not lying just want you to look. It's a nerve blocker!
Look into gene therapy