You are absolutely right about stretching. I make it a point to do it every other day minimum. Also the biggest single difference has been juicing Beetroot & drinking it everyday three times a day in small quantities.
@@JohnGraybill Hi, I just use normal Beetroot & juice it raw. This is nothing new atheletes been using it for years to get a boost before competition. MDA ask me if I wanted to go on a clinical trail using beetroot extract. I turned them down though.
7 members of my family are dealing with the inevitable progression, after a break I use a dollar or and not a step without Birkenstock (the stuff sole helps with
WHAT DIET I HAVE TO TAKE TO MAINTAIN MY BODY ENERGY LEVEL AND WHAT EXERCISE I HAVE TO DO. I AM 24 YEAR OLD FROM INDIA AND I HAVE SAME PROBLEM LGMD2A-CALPAIN3 .YOU ARE DOING IT AT 40 YEAR AGE AND ME ALSO STANDING LIKE SAME AT 24 AGE ....
The diet I've found to be best is eliminating dairy, processed foods, and cooking with all organic. I can't say what is best for you because I don't know what is best for you. You really have to experiment with taking foods out of your diet and seeing how you feel. Stretching is very important and I do this everyday. Keeping a positive mindset is great and reading books. Take it one day at a time and over the course of time you will get to where you are suppose to be.
Would you be able to post a video showing how people help you sit up and down? I work with individuals with disabilities and I find that this may be helpful to understand. I'm just not sure what would be painful or helpful. Also, do you find that you have people help you most of the time if you're with someone? Or do you usually do things independently even if it's difficult. I realize that a lot of this could be based on convenience and time?
I think you are talking about me having a video on how people help stand me up....I’ll work on it and publish it. When I’m out and I need help I ask for it. Otherwise I try to do things myself.
do your muscles ripple at all? i have reasons to believe i have this disease. my muscles have always been in pain. i remember in school playing sports my muscles would get the worst pain and i would see everyone running around and think everything was normal. im 18 now and my muscles are even in more pain. i can still do pull ups and push ups but i dont seem to progress in my working out. ive been working out for 4 years and hardly progressed. my muscles will also ripple due to a rare disease i called RIPPLING MUSCLE DISEASE. i think i might have a less severe case of this muscle dystrophy. what were some beginning signs for you? i just went to a doctor and i have a very high CK levels. muscle pain, stiffness, weakness in phsyical activity, rippling, cramping.
The high CK levels tell me that you have a muscle disorder. How high was the CK? When I had my CK level checked in the beginning it was in the 10,000 range. Now it is in the 300. I do not have any muscle rippling going on. You could be over doing it with your working out.
I'm not sure what test they would perform to determine what type of MD you have. Ask the MDA about going about getting a genetic test done is my advice.
Great to see you still going strong John! Power to you!
Thank you for that.
I thank God for your videos John, before your videos I did not know what I had and I felt so alone 😊
Glad you found me.
Thank you for watching and I'm glad I helped you not feel so alone anymore.
Dude, that was painful to watch. I hope you’re using a wheelchair more. LGMD2E here.
Stiff...you sharing helps everyone
You are absolutely right about stretching. I make it a point to do it every other day minimum. Also the biggest single difference has been juicing Beetroot & drinking it everyday three times a day in small quantities.
Beetroot? What are the ingredients you put into it?
@@JohnGraybill Hi, I just use normal Beetroot & juice it raw. This is nothing new atheletes been using it for years to get a boost before competition. MDA ask me if I wanted to go on a clinical trail using beetroot extract. I turned them down though.
How much beetroot and juice do you use?
Keep pushing forward from 5 tell 38 I'll me in thursday just wheelchair. Been in wheelchair since 2006 no fun can't drive anymore
Thank you for watching and your encouragement!
The hip pain is real! If I do too much, my hips tell me.
you're so right, about the thoughts and mind-struggle, it's so true. this disease is such a pain in the arse.
THank you for watching and finding a similarity with the mind.
7 members of my family are dealing with the inevitable progression, after a break I use a dollar or and not a step without Birkenstock (the stuff sole helps with
God please help him, I have this limb girdle muscular dystrophy also
WHAT DIET I HAVE TO TAKE TO MAINTAIN MY BODY ENERGY LEVEL AND WHAT EXERCISE I HAVE TO DO.
I AM 24 YEAR OLD FROM INDIA AND I HAVE SAME PROBLEM LGMD2A-CALPAIN3 .YOU ARE DOING IT AT 40 YEAR AGE AND ME ALSO STANDING LIKE SAME AT 24 AGE
....
The diet I've found to be best is eliminating dairy, processed foods, and cooking with all organic. I can't say what is best for you because I don't know what is best for you. You really have to experiment with taking foods out of your diet and seeing how you feel. Stretching is very important and I do this everyday. Keeping a positive mindset is great and reading books. Take it one day at a time and over the course of time you will get to where you are suppose to be.
thx
you reply
it means alot...
thx
sahil jindal
Would you be able to post a video showing how people help you sit up and down? I work with individuals with disabilities and I find that this may be helpful to understand. I'm just not sure what would be painful or helpful. Also, do you find that you have people help you most of the time if you're with someone? Or do you usually do things independently even if it's difficult. I realize that a lot of this could be based on convenience and time?
I think you are talking about me having a video on how people help stand me up....I’ll work on it and publish it.
When I’m out and I need help I ask for it. Otherwise I try to do things myself.
do your muscles ripple at all? i have reasons to believe i have this disease. my muscles have always been in pain. i remember in school playing sports my muscles would get the worst pain and i would see everyone running around and think everything was normal. im 18 now and my muscles are even in more pain. i can still do pull ups and push ups but i dont seem to progress in my working out. ive been working out for 4 years and hardly progressed. my muscles will also ripple due to a rare disease i called RIPPLING MUSCLE DISEASE. i think i might have a less severe case of this muscle dystrophy. what were some beginning signs for you? i just went to a doctor and i have a very high CK levels. muscle pain, stiffness, weakness in phsyical activity, rippling, cramping.
The high CK levels tell me that you have a muscle disorder. How high was the CK? When I had my CK level checked in the beginning it was in the 10,000 range. Now it is in the 300. I do not have any muscle rippling going on. You could be over doing it with your working out.
John Graybill II my CK levels were in the 3000s
What is your doctor telling you to do now? There are tests out there to determine if you have LGMD.
im going to a neurologist to get a EMG or something now. What are the test? they are looking into that as well
I'm not sure what test they would perform to determine what type of MD you have. Ask the MDA about going about getting a genetic test done is my advice.
How old are you now, because that's what I was doing before I was 30 years old
I am 40 soon to be 41. Are you still moving like I am in the video?
John Graybill II
No 😢😢😢