Getting up from a seated position when I can’t get up on my own 

As long as I’m still mobile, I’ll do what I can. Thanks for watching.

I have not heard of stem cell therapies in the USA. I’ve heard about it in china but I wouldn’t go chasing rainbows as sometimes the therapy could cause more harm than the disease. Thank you for watching the video. Our job now that we’ve lost our abilities is to find peace and continue living, not allow the disease to change us negatively. This is my path and has brought on a better living style for me.

@@JohnGraybill i like your attitude, thank you John- stay blessed

Have you contacted the organization “coalition to cure calpain 3”? They have a registry for people like us who have 2A. HIGHLY recommend reaching out to them. Thanks for watching and commenting.

@@JohnGraybill you're welcome. I never knew there was anything out there for us I'm gonna have to check it out cause the drs i go to for it years ago said take creatine but at the same time they tell you to keep your weight down creatine put weight on it I tried it but it made my walking worse within a week no joke and thank you for the heads up about that cuz I've always been told it was nothing available and that I would see some kind of treatment for it in a lifetime that's what the drs have told me

@@joshhandy8895 keeping your weight in check is very important. The more weight we gain the harder it is on our back due to the belly getting bigger. I sometimes do fasting for a day where I only drink liquids and then the next eat regularly. It’s a balance and one we need to keep an eye out for.

@@JohnGraybill you right about that. I usuall eat once a day and rarely eat twice a day but if i don't eat it makes it difficult to move but i still goes a day or so here and there and not eat and I don't know if you're like this to but if I don't eat meat I don't feel right either but keeping your weight down is key like you said and they told me to maintain a certain weight so that I don't loose weight then my body gets usse to that lighter weight then if I gained weight I would be in trouble cause I couldnt handle it then I'd be in a big mess if all that makes sence but the extra weight put pressure on your joints and wears them out cause of muscle loss and the weakness to

@@joshhandy8895 I typically eat three meals a day but depending on sleep and when I wake up, I might eat 3 meals from 11am to 6pm and that’s it. Sometimes I only eat 2 times a day, depends on how I feel.

Thank you for your words!

Thanks Daniel. Good to hear the belt trick has come in handy with you. I don’t know how I could be manage without it.

Oh! Plus get a lift hoyer and a multipurpose chair lift for showering and toilet.

Good questions. I’m not sure what the answers are. I have seen a fluctuating disease course for myself over the years. And now, maybe I don’t have that much muscle left so rebounding back to strength might be gone. I don’t know. I can imagine how difficult it must be to be dependent on others for everything. The best advice I can give you is to take one experience at a time and try not to compound them which leads to anger and poor me attitude. I say this from experiencing this myself. What type of LGMD do you have?

@@JohnGraybill my subtype is currently unknown. What is yours?

@@anthonybernardfamily9258 2A

​@@JohnGraybill merhaba, öncelikle size sağlık diliyorum. Bende de bu hastalık 2015 yılında başladı. Bazen ilerleyişi hızlandı bazen de yavaşladı. Bir şekilde 9-10 yıldır idare ediyorum. Şubat ayına kadar desteksiz yavaş ve sık sık düşerek de olsa yürüyebiliyordum. şubat ayında yine evde yürürken bacak kaslarım boşaldı ve olduğum yere düştüm. Ayak bileğimi dört noktasından kırdım. Diz kapağımda da kırık oluştu. Ayak bileğimden ameliyat oldum. Platin ve çiviler takıldı. Sonrası klasik alçılı bacak ve aylar süren yatak istirahati. Bu süreçte bu sinsi hastalık iyice ilerlemiş fark ettirmeden. Alçı çıktığında bacaklarım özellikle de kırılan bacağım çok daha kullanılmaz haldeydi. Tüm umutlarımı yitirmiş durumdayım. Devamlı evdeyim. Zaten oturup kalkma da çok fazla zorlanıyor ve zor yürüyordum. Şimdi ise o günlerimi arar oldum. Biraz şişmanım. Oğlum küçük yaşta. Evde Blbana yardım edebilecek sadece eşim var. Ona çok teşekkür ediyorum, elinden geleni yaptığı için. Ama o bile zaman zaman bunalıp açıkça söylemese de benden bıktığını hissettirebiliyor. Huzur içinde ölsem kendim ve çevremdeki herkes için en güzeli olacak ama maalesef öyle bir hastalık ki bu öldürmüyor, insanın hayatını mahvediyor. Gen testimde lgmd tip 2j olduğu yazıyor. Tedavisi de birçok kas hastalığının olmadığı gibi bu türün de yok. Umarım bizler için bir mucize olur. Saygılarımla

Thanks for watching. The hands in the pocket for sitting down may be a bit to dangerous for me. I use to use this hands pressing on top of the thighs when I would walk but never for sitting down. I’d be too afraid that if I lost my balance leaning forward that I wouldn’t have my hands to help brace me. But if it works for you, good.

@@JohnGraybillwhat you have said is absolutely correct, we all have our own ways of doing things depending on our comfort and muscle strength, every method doesn’t work for everyone.

Even I put my hands in my pockets while i sit that indeed helps me to dampen the impact. With the denims on I feel more confident as it adds some more resistance when I put my hands in my pockets.

@@HughBrian34 how is she doing with being in a wheelchair?

@@JohnGraybill she is fine - she can still do most stuff with the wheelchair. I admit it makes her do things she was struggling to do 10 years prior to her walking deterioration. But she has the myofrilbar myopathy of muscular dystrophy - which is similar to limb girdle. Most of my family members have it and they seem to deteriorate once they turn 40

@@HughBrian34 I’m sorry to hear most of your family members have this. Do you? The only thing we can do is take one day at a time. Otherwise the disease is to hard to handle.

Hello and thank you for watching. There is no difference in getting up from any type of chair as the process is the same.

Yes I have a podcast called “Beyond Labels & Limitations”. You can find it wherever you get podcasts. You don’t have to join anything as it’s free. Let me know if you can’t find it. You can also type my name in the podcast app and it’ll show up that way. Thanks for watching and listening.

I noticed taking Turmeric helped with my inflammation numbers when I got blood drawn yearly from my doctor. Keeping your CRP levels, this measure’s inflammation, down I feel helps your body not work so hard to repair itself from sickness. It’s my guess and I have no factual proof to this but my CRP numbers were always below 1. As for other advice, I would suggest examine your thoughts. I’ve found that my mind would tell me all sorts of things about myself with MD that I would become down and feeling hopeless. But now that I look at my thoughts and what they are telling me, I see their not always true. This again has helped me.

Hello. Have you contacted the “Jain Foundation”? They’re located in USA and work with LGMD2B. Worth looking into. The exercises I do are on my RU-vid page. I try to do them every day but some days I don’t, depends on how I’m feeling physically. As for supplements, I use to take Vit D, DHA, Turneric. I haven’t been taking them lately and I can’t say I saw benefits from taking them. Maybe the Turneric as that helps reduce inflammation but other than that I don’t think they helped much. As for food, I stay away from Dairy, And gluten. Again I don’t know if this has helped me in any way related to LGMD but I have maintained the same or nearly the same weight for close to 20 years. My condition has gotten weaker as I can no longer get up on my own. It comes with the territory so I just roll with with. I would reach out to the Jain Foundation as they deal with 2B individuals like yourself exclusively. Thanks for watching and I hope this hells you along the search for answers.

I have limb girdle type 2b❤

@@nancylovesme have you contacted the “Jain Foundation”? They deal with LGMD2B and I think they can be a great source for you going forward.

There are devices like a toilet lift that can help lower you and raise you up to an almost standing position. That’ll be my advice to you. One day at a time is what works for me. No sense in projecting a hopeless future when we don’t know what can happen.

I assume that John already tried everything possible.

E.M: you may be right, Blessed Be.

I have in the past. The thing you must be very careful is if you take too much creatine your liver will stop producing it and you’ll be reliant on taking it orally. From my experiences, it’s not worth the money doing. Maybe you’ve had a better experience but I can’t say it did anything for me. Thanks for sharing though.

The disease varies from person to person. And it even differs between people of the same subtype. I can’t say it will get easier as you age and the disease progresses but the rate at which this all happens is something I don’t know. I’ve had it for nearly 30 years and I’m still walking. I can’t get up on my own but this started about 3 years ago. So, I lived with it for 27 years before it really impacted my life. I hope this helps you.

​@@JohnGraybillSorry but last question. How old are you now? At what age did you realize you couldn't run and Walking is a bit difficult and you have trouble climbing stairs.

@@prasaddhumal7836 I am 45 years old. I haven’t run since 1995 so that would be roughly 30 years ago that I last ran. I mainly stopped because I looked funny running and I would get tired quickly. I stopped walking up and down steps about 12 years ago. But I walked up and down stairs safely for 17 years after I was diagnosed. I mainly stopped walking up stairs because I moved into a house that didn’t have stairs. Maybe I could have walked up and down them for 20 years after being diagnosed. I don’t miss walking up and down stairs though. You mainly adjust to what you can and focus on those things.

Do you live in USA? Testing now for genetic types of LGMD can be done by a mouth swab and then sending it to a lab to test which mutations you have. I’d ask your doctor about this. Back when I was diagnosed it had to be a muscle biopsy but that is NOT the case today. I had my diagnosis, which was in 2000, just tested through a saliva swab from my neurologist and it came back with the same mutations as the muscle biopsy did 23 years ago. So the mouth, saliva swab is the cheaper way to go. It should take roughly one month to get the results. Thanks for watching and following.

@@JohnGraybill I live in Karachi Pakistan can this test be done here or it's available only in specific countries

@@talhakhalid3127 great question and one I’m not sure of. Ask your neurologist if this test is available…that is where I’d start. Get back to me if you have any trouble and I’ll try to help you find a place to have this done.

@@JohnGraybill THANKS!!

I can’t get up now.