I got diagnosed with the adult onset of Myotonic dystrophy in my 30's. I went from walking by myself to using a cane to using a walker. I go to the gym 4-5 days a week. I threw myself a huge pity party when I got diagnosed but I am not ( by the grace and mercy of God) not going to let it beat me. I have an amazing husband and daughter that supports me. Keep pushing! We got this!
That mind set will help more than you know, keep trying to progress and see what strength and muscle you can put on! And a support system will be the best thing you can have!
Respect to you for uploading this video, I got diagnosed with Becker Muscular Dystrophy last month. As a person who was enjoying body building, it was really difficult for me to swallow the pill. I've been looking for videos who was in a similar situation. Thanks for uploading this video. Stay Hard brother, we have more logs to carry.
Keep up the positivity brother! I too, have been diagnosed with DM1. I'm 56 now and looking back, I suspect I have been experiencing symptoms for about 10 years and only found out and confirmed through DNA testing about 2 years ago. A couple things I'd like to mention for the forum is, my neurologist indicated that I should not lift too heavy as it may accelerate the atrophy and muscle wasting that comes with the condition. So, as it progresses, keep that in mind and continue to stretch a lot and do lighter weights. I know this doesn't help in bodybuilding. Also, and found out by chance, I was prescribed an anti-inflammatory/steroid for another condition (my back, as well), and it relieved my pain, but ALSO reduced the swelling in my joints (in my fingers!) and my grip strength increased, and much of my symptoms were relieved quite a bit. I wasn't fixed, but symptoms definitely improved functionality in my body. However, we cannot be on steroids, so it is not a long term fix; nothing is... My message is changing diet to reduce inflammation also helps along with lighter weights and stretching to feel better. I used to be a high-school wrestler and ride dirt bikes and grip strength was key in both of those activities, so it bothers me tremendously that my wife opens jars for me these days! LOL! Stay STRONG!!!! Mind and body!
Hey man I have FSHD, I’m 22, I found out when I was about 14, I have double winged scapula, and you can see it a little in my face. I played sports through high school, I’ve gained muscle but it goes away very quickly if I don’t stick to my diet and dedicated to the gym. I lost about 40lbs my 8th grade year, that was the first time my body attacked it’s muscle, again a little the last year. I’m now back in the gym 2 1/2 months, I’m sitting at 6’ and 171lbs, I’m getting stronger quick, and have never pushed myself this hard, because I always played the victim, when shit was sore for days I’d fall out of routine and give up. No more though, we are going to keep killing this shit. Keep up the hard work brother, look forward to watching the rest of your videos!
That is really inspiring to hear man! So great you are picking it back up! And you are another proven case that we can still get stronger and put on some more muscle.... it is not easy but if we do everything right it is possible! Keep crushing it!
Hey Alex. I think I have FSHD too and my ortho wants me to do a scapulathorasic fusion surgery so I can fix my winged scapula and get my range of motion back. I have both winged scapula as well but only my right arm is effected and my scapula pops out when I lift. Have u experienced your scapula popping out a little and motion problems in your arms? I want to keep lifting too as a love the gym
Stay strong Brother i have the same disease. I was very athletic at my younger age and I was playing soccer. This disease is so hard and not! bcs we look very healthy and muscular but yk that our body gets fast tired and normal things getting difficult. It took me a long time to accept my disease but now I'm doing better every year. Wish you the best and i hope one day we can fix this disease. Peace&Love from Switzerland may all humans with diseases be blessed✌🏼
I have Myotonic Muscular Dystrophy diagnosed at 11 and I am 37. I am having muscle weaknesses my arms and legs and have sleep apnea.I inherited it from my father before he new he had it. Keep on living your life to the fullest.
How have you been able to work all these years? I was diagnosed when I was 17 and I'm afraid I'll lose functionality by the age of 30? How do you feel now?
I was also diagnosed with DMD after giving birth to my son who also has it now..had less information about the condition, it's symptoms showed up in me when i was 11yrs until i gave birth to him He's now 10years and am 32year but both his limbs weekend already 😥
Thank you for making this. I got diagnosed with DM1 when I was 26, I’m 35 now. Thankfully I got a really early diagnosis because my first degree was genetics and I figured out the symptoms for myself before any of the many doctors and professionally I have seen picked it up. I’m getting worse, but as a physio I have a very active job and have just started learning to lift. I’ll take it slow, but I can still build up. It’s really inspiring to see your mindset. I’ve subscribed and am looking forward to following your journey!
I really appreciate that! You have a great mindset as well know long you can still build! I was 26 as well and thankfully I was into bodybuilding and you are thankfully in an active job which keeps us moving! It is so important to train our muscles and let them know we need then to stick around and get stronger!
@@jessicaedpatule4042 I also was diagnosed with DMD but unfortunately mine was diagnosed late because it showed up when i was 11, and my son has it too😥
I was diagnosed when I was 15; I'm 40 now. Limb Girdle Muscular Dystrophy 2L. No matter what anyone says, it'll never get easier. You'll have to fight 10 times harder than the rest. But, don't listen to the doubters. Work Harder. They told me I would be in a wheelchair at 26. Never give up. Listen to your body and no one else. Good luck. I'm out here.
Are you still able to work, or is your present condition preventing that? Do you have children or are you getting married? Are you currently employed or working somewhere?
@nishargakabir745 I received a neck and brain injury from a fall. I've been going to physical therapy twice a week to get healthy enough to work. My wife left me and took the kids. She said it was too hard, and my medical bills cost too much. But, I found faith in myself because the support around me gave up. I have a few good people who haven't given up on me. But, the majority have removed me from their lives. I had the feeling of, "If you're not useful, you're useless." My stubborn pride and love of the beauty this world had to offer has kept me going. I guess you could say I lost faith and trust in people. People of the world are sick and twisted. It's best not to get caught up in the "Rat Race". Be happy with what you have, and give away anything extra. Baggage will only slow you down. Live by the quote from "Tecumseh" and everything will be fine. One scripture that really helped me and gave me purpose was (Matthew 10:14) Say what you mean. If they don't believe you or support you, move on. Life is beautiful. Don't let the hate of others suck you into a life undeserved.
Hey Dom, It’s sad to hear the news but I’m glad that you’ve done so much to help yourself already. Keep tearing up that gym of yours for as long as you can! Glad to hear and see how well you two are doing tho.
my little sister just got diagnosed with myotonic dystrophy type 1...thank you so much for posting this! i have been in a downwards spiral and seeing this is very hopeful and inspiring! hope you are doing well.
Got diagnosed with DM2 a few months ago... the irony of life is that just like you I always was a muscular guy since my childhood...always the stronger of all my friends! ...now we are sentenced to life exercise and proud of it!
I've just recently been diagnosed with a type of Emery-Dreifuss MD. Started with random falling, got baseline bloodwork because I am 25, and thought I needed a measure to base my levels off of going forward. High CK levels as well. The primary doctor asked if I drank a lot because they're oftentimes disguised as liver enzymes... I won't bore you with the rest of the story. I am lucky to have no cardiac involvement at this time and look forward to seeing your modified workouts and getting back to daily lifting like I was used to in high school and college. Hope to work hard and long enough to live a full ambulatory life. Like everyone else, I am really happy to have found your channel. Your attitude is awesome. This is really uplifting to see others working against their disease.
Thank you for sharing your story I know exactly what it is like. I have a few videos of modified workouts or low impact to just start out. Also more advanced workouts when you build back up! Good fighting the good fight and we will keep on moving forward!
Im 36 and I have fshd md. I have recently started going to a gym doing light resistance training and cardio, keep up the work be. Inspiring and i know the heartache and grit it takes to start positive .
i love this im a 23 year old body builder witj cancer ive lost about 20 pounds im Muscle since thank you for this all my confidence was about my body i was going to give up i thought i was alone thank you for this i needed this
I have a trouble building Muscle now when i workout i try to do only body weight now or light weight i stopped lifting heavy because i was loosing mass faster what do you suggest
@@gmchybrid5287 stay away from the heavy stuff. I would say light weights about 10-15 reps per set. But every rep focus on squeezing the muscle and give a slow eccentric movement. Do you take any supplements?
I do i take alpha test from Muscle tech creatine about 5 grams daily vitamin d organic vitamin c organic garlic ginger and kinetic Mushroom pre workout my ck is really high in my blood most of the time i have Muscle pain so im not sure if my Muscle is breaking down when i feel that pain or if the creatine makes it worse i watched your videos too and ck levels
I was really into body building it was my life 3 months from getting my personal trainer certification from NASAM picture was me before my first power lifting meet i lost hope when i lost size so quicky and stopped only do calestinces and what i can hard to gain and not loose now
Great video! Much respect to you for sharing this info. My wife has DM1 and has been working out 4x a week. Her doctors all agree to keep up with the exercise. I read a study proving exercise helps afib significantly. Keep crushing those workouts!
Mike Bragdon that is awesome for her, it is very uplifting to know I am not the only one who tries to crush it every day. And I believe those articles it is the best thing we can do for ourselves!
I got diagnosed when I was a kid, mixed variant and the development has stopped for now and I got into training again and Im making gains faster than ever but Ive trained like 5-6 years my life already. And now Im back at it, after a severe relapse into weed smoking and alcohol abuse.
The disease is terminal but i love how he has a strong will to fight to the bitter end. Max respect. Fuck taking it easy. Hit the gym and don't complain. Awesome.
I have DM1. I got diagnosed last year at 38. I have been walking 3 to 6 miles daily for a few years due to having a couple of dogs and I also do Ki Aikido. My doctor said that doing both of these things should really help as it's kinda low impact but a constant. Recently the locking has started to effect my toes but find standing tiptoe a few minutes a day can actually stop it happening as often.
Ann Kendrick that is great you are active and keep moving. And I haven’t experienced the toes yet as of now it is just the hands. But I like the tip toe idea
Thanks for sharing,i was diagnosed with DMD type after giving birth to my son who also has it now 😥 but i had less information about the condition until i gave birth to my son though the symptoms showed up in me when i was 11years..am on crutches for now but exercises are hard for my son because i also can't help him out😥🇺🇬 Here in Uganda it's a very rare case🇺🇬 but we keep pushing God gat us 💪
@@Абдуманноп-щ8ы I am now 30, the disease symptoms come on more often as you get older. Working out has greatly helped keep them more gradual. I am hoping in the next 5-10 years
Amen you are describing a book that everyone should read by Spencer Johnson The Present. You are living in the present , making the best of your life. My cousin is 77 now she sitting & sleeps in her chair cant stand up anymore, she can knit beautifully even though it's hard but that's what keeps her going making baby blankets for orphanage or for baby showers. All she wants is to just stand up for a moment. So the Arons & Hurs in her life hold her up briefly . Exodus 17: 12-14 Moses was to tired to hold his hands up. I am sure when that day comes for you. You will have Arons & Hurs in your life. God Bless you
He was diagnosed last week...150 repeats currently. Pray for him/us. I will tell him about your inspirational channel. Keep posting. How quickly are your numbers going up?
Grandad on my moms side had it, died at 46 because he didn't take care of himself. Passed it on to my mom and her brother, who developed symptoms in their early 20's, curious that Grandad had two other children from a new wife both aunt and uncle are negative. My mom passed it on to my sister who had it from birth. My Uncle passed it to his son who had it from birth. Mom's sons are negative for it. Uncles daughter negative for it. My mom let her diagnosis take her and she immediately resined herself to her chair. Uncle keept a garage gym and lifted until the end. Both mom and Uncle died at the exact same age almost up to the day. Uncle had a fuller richer life with his wife and children because of this( A great painter till the end, his hands/fingers locking made painting easier.) Its always about what you do with the time you have no matter what's killing you because something always is. Just buried my Uncles son, my cousin a few months ago. He was 50 didn't take care of himself let it take him. My sister is 51, hope she will see 60 when mom died. On another note, like the gym set up. I used to have the Hoist hack squat\ leg press combo and loved it and only sold it when I was able to go full Hoist commercial. Glad I found your page sir.
Wow! You have experienced so much of this, I really appreciate you sharing your the story’s and how people dealt with the disease. Hoist is the best looking to go all commercial as well!
You're such an inspiration. Thank you for sharing your story with us. A few months ago I was diagnosed with LGMD. So far I have lost strength, but I haven't lost muscle yet. Are you able to build muscle and improve strength with your exercises? I'm doing physical therapy, and I'm just waiting for the best.
Emisa Diaz I really appreciate your support! Since I started body building when I was 19 in almost 9 years I have gained about 35-40lbs of muscle. My muscle and strength I am still improving, it is slow but that is expected. Choosing the right workouts and the way I supplement and how regimented I am I truly believe that has helped me a lot!
Hi, I'm a teenager and I also have DM I have struggled with it since I was about nine or so and this is very helpful thanks (I also don't know any other teenager who has it too)
I am glad it could help, I have spoke. To a few teenagers about this, and it is important we do everything and whatever it take to just live. Normalcy is possible awe just have a few obstacles to over come and fitness will help keep our symptoms mild
Thank you!! I have MMD, my daughter 17 has hip and shoulder damage like that of someone in her 6o's. She has lots of the fatigue and never built muscle, so when weakness started her joints took the punishment. My son, 10, myself, and the teen all get punishing spasms in legs, torso, and me -, arm/hand much like the locking you have now. My toes will pull straight up to the ceiling... hurts... lots. Would you post some plans for us in the MMD community?
Shellie Sarah Gioia I am sorry to hear about that. This can get tough and I have had my joint issues as well. Supplementing can help control the pain and be able to still workout. We can all still make progress or maintain what we have and it is important to start working out younger for us and keeping active throughout our lives especially with mmd. I will eventually be going over some workouts on the channel and really show what I do to keep myself as healthily as possible!
Just diagnosed DM2 this year after years of mysterious heart problems and strange fertility issues with my wife. I’ve lost some strength with age. Pullups and dips have gotten weaker, which doesn’t seem like a big deal, but it’s a bad sign long term.
I have muscular dystrophy don't know which one just know it ain't Duchene or becker, I kind of played the victim card saying "theres no point" was saying that after I found out, found out when I just turned 13 now I'm 16. but I'm starting to work out now because there is a point better quality of life. Ps: I still don't know which type because I'm getting tested just got diagnosed
Simeon Wesley glad to hear that you are starting to workout. Regardless of the type you have staying active and working out with keep your symptoms more mild. You still can get stronger and put on some size!
i also have MD they say its limb gridle, my docs told me to not workout and i really regret i never did!! now im changing my body in ways i couldnt imagine. our brains and bodys powers and unbelievable, keep pushing and dont let anything get you down!!
Sometimes this can be hard I definitely get it. But what we have control of is what we do. Keep your body moving and it will keep it mild. Looking into some supplement may help too. We just need to keep fighting and find ways to help us move forward. You love you career there is a way to keep it!
How have you been able to work all these years? I was diagnosed when I was 17 and I'm afraid I'll lose functionality by the age of 30? How do you feel now?
Sorry I was diagnosed wen I was 3...I'm 41...if anybody is a little un happy txt me ill show you all how to become a legend with muscular dystrophy...rip Jerry Lewis.....coincidently the nutty professor..great movie but and even greater person.
15,660 repeats, but DM 2. I lost muscle while working out but I couldn't figure out while doing 100 sit ups a day why I was loosing muscle. (This was before diagnosis) But I'm still trying and changing things to try and stop the degeneration. Can you recommend what to supplement with?
And thank you so much for uploading this.. I want to believe I can build! I will tell you that not working out is very bad though.. use it or lose it.. faster than if even using it too much, in my experience. I'm not kidding!
The title you should say. What type of muscular dystrophy you have. Please. People misunderstanding and think is duchenne. Thanks for your information.
Hey just wondering if you can post a video with low intensity workouts. I cannot do pull ups like you. Maybe some balancing exercises would be beneficial
I do have a few videos of all low intensity workouts. It focus on bands and modifications that can still help build strength as well as balance. If you go into my channel page I have a playlist of all my MD videos. If you have any trouble finding them or want one for me too focus on in a future video just let me know!
hello i suffer from LGMD and will be posting my version of workouts very soon! I will add balancing in as this is something i too have to practice :) take care!!!
@@emilkaswayy that’s awesome to hear and thank you for your support! I look forward to see those videos in the future it will help many of us. If you need any ideas feel free to see the ones I posted as well!
I hope the best for him but his motivation will help him on the long run. Taking take of ourselves is a full time job so we need that motivation to help keep us going. Just supporting him will help him out more than you will know!
I would look into myotonia medication numerologists can help you with that. I like to use joint mobility as a supplement and that has helped my joint relive some pain and tightness I have it down on my supplementation videos. Also working the. Out consistently and keeping blood flow in them will help it out too!
My husband got diagnosed with myotonic dystrophy when he was 16 he is 38 now its good for me to learn more about the condition he also cant bring phlegm up it gathers on his chest and he brings it up like he is being sick just like to know is that part of the condition also
I'm 45 diagnosed 20 yes ago.im still able to workout for about 45 min.im exhausted after along with the daytime sllepiness.any tips on pre-workout suppleness and insomnia
TRT has really helped my sleep and I feel way more energetic! And pre workout amino energy is a good one only about 100-150 caffeine and amino acids which is great for the workout!
How have you been able to work all these years? I was diagnosed when I was 17 and I'm afraid I'll lose functionality by the age of 30? How do you feel now?
@@Абдуманноп-щ8ы I am 30 now and it has just been constant movement and workouts. I really do make my body a full time job. Supplements definitely help, exercise, routin e maaagses etc
I got myotonic dystrophy 2. Just found i my test level was 37 and it has to be 250-700. Will self pinning myself with testorsterone do harm to me? Allways have been pretty muscular.
I would definitely recommend that you talk to your doctor or neurologist to prescribe you delatestryl, which helps a lot with low test. It will get you back to a normal range. That would be the route that is the safest. You could try some test boosters supplements and that will raise it a little bit too.
Jay Madhavi I really appreciate that! Just starting slow maybe with some resistance bands to start and try to make it harder every month an challenge your self and then with you comfort you could add on some weights. I have a few workout videos that show low impact workouts and videos that have some weight training workouts. Also creatine monohydrate is a great supplement to add every day, you want to take at least 5 grams every day!
Jay Madhavi I really appreciate that! Just starting slow maybe with some resistance bands to start and try to make it harder every month an challenge your self and then with you comfort you could add on some weights. I have a few workout videos that show low impact workouts and videos that have some weight training workouts. Also creatine monohydrate is a great supplement to add every day, you want to take at least 5 grams every day!
Jay Madhavi I really appreciate that! Just starting slow maybe with some resistance bands to start and try to make it harder every month an challenge your self and then with you comfort you could add on some weights. I have a few workout videos that show low impact workouts and videos that have some weight training workouts. Also creatine monohydrate is a great supplement to add every day, you want to take at least 5 grams every day!
i also have limb girdle! I highly suggest doing anything that your body can do and is comfortable with, im starting a youtube channel on this and will have my own workout posted soon!! keep slaying jay we are something else💞
Алан Расул I am sorry to hear that and I hope it gets better. I have some low impact workout videos that may help you maintain the muscle you have. I appreciate your support and if you need anything just let me know!
I was diagnosed at 27 with distal mayopathy/nonaka myopathy, it is getting progressive but hopefully after watching your video I got inspired. How can I start a gym? I text you on Instagram, if you can help would be great. 👍
Hey man I have FSHD, I’m 22, I found out when I was about 14, I have double winged scapula, and you can see it a little in my face. I played sports through high school, I’ve gained muscle but it goes away very quickly if I don’t stick to my diet and dedicated to the gym. I lost about 40lbs my 8th grade year, that was the first time my body attacked it’s muscle, again a little the last year. I’m now back in the gym 2 1/2 months, I’m sitting at 6’ and 171lbs, I’m getting stronger quick, and have never pushed myself this hard, because I always played the victim, when shit was sore for days I’d fall out of routine and give up. No more though, we are going to keep killing this shit. Keep up the hard work brother, look forward to watching the rest of your videos!
there is an exercise group on fb of people with it and some of them are pretty old like in their 60s or 70s still working out! maybe not running marathons but keeping mobile in any way they can and plenty do walk. my moms 60 and has it and hikes and my auntie has it and she bikes alot on her peleton and shes like 48. they both walk pretty well and do everything they want to do. dont let fshd stop you!
I got diagnosed with the adult onset of Myotonic dystrophy in my 30's. I went from walking by myself to using a cane to using a walker. I go to the gym 4-5 days a week. I threw myself a huge pity party when I got diagnosed but I am not ( by the grace and mercy of God) not going to let it beat me. I have an amazing husband and daughter that supports me. Keep pushing! We got this!
That mind set will help more than you know, keep trying to progress and see what strength and muscle you can put on! And a support system will be the best thing you can have!
Sir iam also a muscular distrophy patient i wanna change....
hey man, this video was so inspirational, big love from a 21-year-old with Muscular dystrophy from IRAN ❤
Respect to you for uploading this video, I got diagnosed with Becker Muscular Dystrophy last month. As a person who was enjoying body building, it was really difficult for me to swallow the pill. I've been looking for videos who was in a similar situation. Thanks for uploading this video. Stay Hard brother, we have more logs to carry.
Keep up the positivity brother! I too, have been diagnosed with DM1. I'm 56 now and looking back, I suspect I have been experiencing symptoms for about 10 years and only found out and confirmed through DNA testing about 2 years ago. A couple things I'd like to mention for the forum is, my neurologist indicated that I should not lift too heavy as it may accelerate the atrophy and muscle wasting that comes with the condition. So, as it progresses, keep that in mind and continue to stretch a lot and do lighter weights. I know this doesn't help in bodybuilding. Also, and found out by chance, I was prescribed an anti-inflammatory/steroid for another condition (my back, as well), and it relieved my pain, but ALSO reduced the swelling in my joints (in my fingers!) and my grip strength increased, and much of my symptoms were relieved quite a bit. I wasn't fixed, but symptoms definitely improved functionality in my body. However, we cannot be on steroids, so it is not a long term fix; nothing is... My message is changing diet to reduce inflammation also helps along with lighter weights and stretching to feel better. I used to be a high-school wrestler and ride dirt bikes and grip strength was key in both of those activities, so it bothers me tremendously that my wife opens jars for me these days! LOL! Stay STRONG!!!! Mind and body!
Hey man I have FSHD, I’m 22, I found out when I was about 14, I have double winged scapula, and you can see it a little in my face. I played sports through high school, I’ve gained muscle but it goes away very quickly if I don’t stick to my diet and dedicated to the gym. I lost about 40lbs my 8th grade year, that was the first time my body attacked it’s muscle, again a little the last year. I’m now back in the gym 2 1/2 months, I’m sitting at 6’ and 171lbs, I’m getting stronger quick, and have never pushed myself this hard, because I always played the victim, when shit was sore for days I’d fall out of routine and give up. No more though, we are going to keep killing this shit. Keep up the hard work brother, look forward to watching the rest of your videos!
That is really inspiring to hear man! So great you are picking it back up! And you are another proven case that we can still get stronger and put on some more muscle.... it is not easy but if we do everything right it is possible! Keep crushing it!
Hey Alex. I think I have FSHD too and my ortho wants me to do a scapulathorasic fusion surgery so I can fix my winged scapula and get my range of motion back. I have both winged scapula as well but only my right arm is effected and my scapula pops out when I lift. Have u experienced your scapula popping out a little and motion problems in your arms? I want to keep lifting too as a love the gym
@@jagosenjudid u get the surgery and how is it now ?
You are a champ brother! Keep up the great work and raising awareness.
Precision Driving Tech thank you, will always keep it going!
Stay strong Brother i have the same disease. I was very athletic at my younger age and I was playing soccer. This disease is so hard and not! bcs we look very healthy and muscular but yk that our body gets fast tired and normal things getting difficult. It took me a long time to accept my disease but now I'm doing better every year. Wish you the best and i hope one day we can fix this disease. Peace&Love from Switzerland may all humans with diseases be blessed✌🏼
I couldn’t agree with you more. Living day by day keeping my body the best it can be!
I have Myotonic Muscular Dystrophy diagnosed at 11 and I am 37. I am having muscle weaknesses my arms and legs and have sleep apnea.I inherited it from my father before he new he had it.
Keep on living your life to the fullest.
How have you been able to work all these years? I was diagnosed when I was 17 and I'm afraid I'll lose functionality by the age of 30? How do you feel now?
I was also diagnosed with DMD after giving birth to my son who also has it now..had less information about the condition, it's symptoms showed up in me when i was 11yrs until i gave birth to him
He's now 10years and am 32year but both his limbs weekend already 😥
Thank you for making this. I got diagnosed with DM1 when I was 26, I’m 35 now. Thankfully I got a really early diagnosis because my first degree was genetics and I figured out the symptoms for myself before any of the many doctors and professionally I have seen picked it up. I’m getting worse, but as a physio I have a very active job and have just started learning to lift. I’ll take it slow, but I can still build up. It’s really inspiring to see your mindset. I’ve subscribed and am looking forward to following your journey!
I really appreciate that! You have a great mindset as well know long you can still build! I was 26 as well and thankfully I was into bodybuilding and you are thankfully in an active job which keeps us moving! It is so important to train our muscles and let them know we need then to stick around and get stronger!
My two kids have the same 😢 drink a lot infusion of Boldo Te they already confirmed it in Chile that this Te it really help
@@jessicaedpatule4042 I also was diagnosed with DMD but unfortunately mine was diagnosed late because it showed up when i was 11, and my son has it too😥
I was diagnosed when I was 15; I'm 40 now. Limb Girdle Muscular Dystrophy 2L. No matter what anyone says, it'll never get easier. You'll have to fight 10 times harder than the rest. But, don't listen to the doubters. Work Harder. They told me I would be in a wheelchair at 26. Never give up. Listen to your body and no one else. Good luck. I'm out here.
Are you still able to work, or is your present condition preventing that?
Do you have children or are you getting married?
Are you currently employed or working somewhere?
@nishargakabir745 I received a neck and brain injury from a fall. I've been going to physical therapy twice a week to get healthy enough to work.
My wife left me and took the kids. She said it was too hard, and my medical bills cost too much.
But, I found faith in myself because the support around me gave up. I have a few good people who haven't given up on me. But, the majority have removed me from their lives. I had the feeling of, "If you're not useful, you're useless." My stubborn pride and love of the beauty this world had to offer has kept me going. I guess you could say I lost faith and trust in people. People of the world are sick and twisted. It's best not to get caught up in the "Rat Race". Be happy with what you have, and give away anything extra. Baggage will only slow you down. Live by the quote from "Tecumseh" and everything will be fine.
One scripture that really helped me and gave me purpose was (Matthew 10:14)
Say what you mean. If they don't believe you or support you, move on.
Life is beautiful. Don't let the hate of others suck you into a life undeserved.
Hey Dom, It’s sad to hear the news but I’m glad that you’ve done so much to help yourself already. Keep tearing up that gym of yours for as long as you can! Glad to hear and see how well you two are doing tho.
my little sister just got diagnosed with myotonic dystrophy type 1...thank you so much for posting this! i have been in a downwards spiral and seeing this is very hopeful and inspiring! hope you are doing well.
Lorena Subieta that really means the world and I wish only the best for her and she needs to know nothing can hold her down!
Got diagnosed with DM2 a few months ago... the irony of life is that just like you I always was a muscular guy since my childhood...always the stronger of all my friends! ...now we are sentenced to life exercise and proud of it!
Ιωάννης Χασκής hell yeah! Definitely standing proud, and love that you are keeping it going!
Hello brother I am also a md patient and very happy to see you for ur fighting spirit
type 1 or type 2
I've just recently been diagnosed with a type of Emery-Dreifuss MD. Started with random falling, got baseline bloodwork because I am 25, and thought I needed a measure to base my levels off of going forward. High CK levels as well. The primary doctor asked if I drank a lot because they're oftentimes disguised as liver enzymes... I won't bore you with the rest of the story. I am lucky to have no cardiac involvement at this time and look forward to seeing your modified workouts and getting back to daily lifting like I was used to in high school and college. Hope to work hard and long enough to live a full ambulatory life.
Like everyone else, I am really happy to have found your channel. Your attitude is awesome. This is really uplifting to see others working against their disease.
Thank you for sharing your story I know exactly what it is like. I have a few videos of modified workouts or low impact to just start out. Also more advanced workouts when you build back up! Good fighting the good fight and we will keep on moving forward!
I have lgmd glad to have found your channel
Im 36 and I have fshd md. I have recently started going to a gym doing light resistance training and cardio, keep up the work be. Inspiring and i know the heartache and grit it takes to start positive .
There you go! We just keep moving forward and and do whatever it takes to make the most of what we got! Staying active is the best remedy!
i love this im a 23 year old body builder witj cancer ive lost about 20 pounds im Muscle since thank you for this all my confidence was about my body i was going to give up i thought i was alone thank you for this i needed this
Don’t give up, do what we it takes, keep of the good fight and you will overcome!
I have a trouble building Muscle now when i workout i try to do only body weight now or light weight i stopped lifting heavy because i was loosing mass faster what do you suggest
@@gmchybrid5287 stay away from the heavy stuff. I would say light weights about 10-15 reps per set. But every rep focus on squeezing the muscle and give a slow eccentric movement.
Do you take any supplements?
I do i take alpha test from Muscle tech creatine about 5 grams daily vitamin d organic vitamin c organic garlic ginger and kinetic Mushroom pre workout my ck is really high in my blood most of the time i have Muscle pain so im not sure if my Muscle is breaking down when i feel that pain or if the creatine makes it worse i watched your videos too and ck levels
I was really into body building it was my life 3 months from getting my personal trainer certification from NASAM picture was me before my first power lifting meet i lost hope when i lost size so quicky and stopped only do calestinces and what i can hard to gain and not loose now
Great video! Much respect to you for sharing this info. My wife has DM1 and has been working out 4x a week. Her doctors all agree to keep up with the exercise. I read a study proving exercise helps afib significantly. Keep crushing those workouts!
Mike Bragdon that is awesome for her, it is very uplifting to know I am not the only one who tries to crush it every day. And I believe those articles it is the best thing we can do for ourselves!
Keep posting please. Thank you for raising awareness!
R13nn3ra1d3n 25 absolutely, I appreciate the support!
I got diagnosed when I was a kid, mixed variant and the development has stopped for now and I got into training again and Im making gains faster than ever but Ive trained like 5-6 years my life already. And now Im back at it, after a severe relapse into weed smoking and alcohol abuse.
Love to hear that! So happy for you keep up the good work abs keep getting after it in the weight room!
The disease is terminal but i love how he has a strong will to fight to the bitter end. Max respect. Fuck taking it easy. Hit the gym and don't complain. Awesome.
I hope you're doing well. Thanks for the great video.
Hey mike, I appreciate that hopefully the next time you visit you can come by and check it out!
I have DM1. I got diagnosed last year at 38. I have been walking 3 to 6 miles daily for a few years due to having a couple of dogs and I also do Ki Aikido. My doctor said that doing both of these things should really help as it's kinda low impact but a constant. Recently the locking has started to effect my toes but find standing tiptoe a few minutes a day can actually stop it happening as often.
Ann Kendrick that is great you are active and keep moving. And I haven’t experienced the toes yet as of now it is just the hands. But I like the tip toe idea
Thanks for sharing,i was diagnosed with DMD type after giving birth to my son who also has it now 😥 but i had less information about the condition until i gave birth to my son though the symptoms showed up in me when i was 11years..am on crutches for now but exercises are hard for my son because i also can't help him out😥🇺🇬 Here in Uganda it's a very rare case🇺🇬 but we keep pushing God gat us 💪
This is so inspirational! I was just diagnosed myself and was looking for really anything to push me through.
You got this, keep moving forward!
What do you tideglusib for myotonic dystrophy?
@@Абдуманноп-щ8ы could you re send that question?
@@marabellofitnessllc8918 How old are you and how does the disease flow? when do you think there will be a cure for MD1
?
@@Абдуманноп-щ8ы I am now 30, the disease symptoms come on more often as you get older. Working out has greatly helped keep them more gradual. I am hoping in the next 5-10 years
I will pray for you
Amen you are describing a book that everyone should read by Spencer Johnson The Present. You are living in the present , making the best of your life. My cousin is 77 now she sitting & sleeps in her chair cant stand up anymore, she can knit beautifully even though it's hard but that's what keeps her going making baby blankets for orphanage or for baby showers. All she wants is to just stand up for a moment. So the Arons & Hurs in her life hold her up briefly . Exodus 17: 12-14 Moses was to tired to hold his hands up. I am sure when that day comes for you. You will have Arons & Hurs in your life. God Bless you
Thank you for posting and your strong determination/ spirit.
My son is being tested for this now.
I need your mindset to help him if he also has it.
He was diagnosed last week...150 repeats currently. Pray for him/us. I will tell him about your inspirational channel. Keep posting. How quickly are your numbers going up?
Grandad on my moms side had it, died at 46 because he didn't take care of himself. Passed it on to my mom and her brother, who developed symptoms in their early 20's, curious that Grandad had two other children from a new wife both aunt and uncle are negative. My mom passed it on to my sister who had it from birth. My Uncle passed it to his son who had it from birth. Mom's sons are negative for it. Uncles daughter negative for it. My mom let her diagnosis take her and she immediately resined herself to her chair. Uncle keept a garage gym and lifted until the end. Both mom and Uncle died at the exact same age almost up to the day. Uncle had a fuller richer life with his wife and children because of this( A great painter till the end, his hands/fingers locking made painting easier.) Its always about what you do with the time you have no matter what's killing you because something always is. Just buried my Uncles son, my cousin a few months ago. He was 50 didn't take care of himself let it take him. My sister is 51, hope she will see 60 when mom died. On another note, like the gym set up. I used to have the Hoist hack squat\ leg press combo and loved it and only sold it when I was able to go full Hoist commercial. Glad I found your page sir.
Wow! You have experienced so much of this, I really appreciate you sharing your the story’s and how people dealt with the disease.
Hoist is the best looking to go all commercial as well!
You're such an inspiration. Thank you for sharing your story with us. A few months ago I was diagnosed with LGMD. So far I have lost strength, but I haven't lost muscle yet.
Are you able to build muscle and improve strength with your exercises? I'm doing physical therapy, and I'm just waiting for the best.
Emisa Diaz I really appreciate your support! Since I started body building when I was 19 in almost 9 years I have gained about 35-40lbs of muscle. My muscle and strength I am still improving, it is slow but that is expected. Choosing the right workouts and the way I supplement and how regimented I am I truly believe that has helped me a lot!
@LAROSE martin th-cam.com/video/3Y0HN7zk9h0/w-d-xo.html
This is everything I am taking right now I hope it helps!
May God bless you and restore you to perfect health. Do listen to Abraham Hicks videos. They may help.
bro has the same thoughts and same mental set as i have..
Hi, I'm a teenager and I also have DM I have struggled with it since I was about nine or so and this is very helpful thanks (I also don't know any other teenager who has it too)
I am glad it could help, I have spoke. To a few teenagers about this, and it is important we do everything and whatever it take to just live. Normalcy is possible awe just have a few obstacles to over come and fitness will help keep our symptoms mild
I'm 21 and I am suffering from this 🙂
@@iqranoonari5387 we are in this together, feel free to reach out anytime! Keep pushing and moving forward!
Thank you!! I have MMD, my daughter 17 has hip and shoulder damage like that of someone in her 6o's. She has lots of the fatigue and never built muscle, so when weakness started her joints took the punishment. My son, 10, myself, and the teen all get punishing spasms in legs, torso, and me -, arm/hand much like the locking you have now. My toes will pull straight up to the ceiling... hurts... lots. Would you post some plans for us in the MMD community?
Shellie Sarah Gioia I am sorry to hear about that. This can get tough and I have had my joint issues as well. Supplementing can help control the pain and be able to still workout. We can all still make progress or maintain what we have and it is important to start working out younger for us and keeping active throughout our lives especially with mmd. I will eventually be going over some workouts on the channel and really show what I do to keep myself as healthily as possible!
@@marabellofitnessllc8918 we can't wait! Know that we will be praying for you and your beautiful family and that you can do this! God Bless you!
Just diagnosed DM2 this year after years of mysterious heart problems and strange fertility issues with my wife. I’ve lost some strength with age. Pullups and dips have gotten weaker, which doesn’t seem like a big deal, but it’s a bad sign long term.
@LAROSE martin 31
I have muscular dystrophy don't know which one just know it ain't Duchene or becker, I kind of played the victim card saying "theres no point" was saying that after I found out, found out when I just turned 13 now I'm 16. but I'm starting to work out now because there is a point better quality of life. Ps: I still don't know which type because I'm getting tested just got diagnosed
Simeon Wesley glad to hear that you are starting to workout. Regardless of the type you have staying active and working out with keep your symptoms more mild. You still can get stronger and put on some size!
i also have MD they say its limb gridle, my docs told me to not workout and i really regret i never did!! now im changing my body in ways i couldnt imagine. our brains and bodys powers and unbelievable, keep pushing and dont let anything get you down!!
Praying for a cure, in the name of Jesus Christ!
I got diagnosed at 24. I really need support and I'm a firefighter/EMT. I'm struggling. I'm afraid I will have to give up my career.
Sometimes this can be hard I definitely get it. But what we have control of is what we do. Keep your body moving and it will keep it mild. Looking into some supplement may help too. We just need to keep fighting and find ways to help us move forward. You love you career there is a way to keep it!
@@marabellofitnessllc8918 thank you I greatly appreciate that. You keep up that hard work!
How have you been able to work all these years? I was diagnosed when I was 17 and I'm afraid I'll lose functionality by the age of 30? How do you feel now?
Sorry I was diagnosed wen I was 3...I'm 41...if anybody is a little un happy txt me ill show you all how to become a legend with muscular dystrophy...rip Jerry Lewis.....coincidently the nutty professor..great movie but and even greater person.
15,660 repeats, but DM 2. I lost muscle while working out but I couldn't figure out while doing 100 sit ups a day why I was loosing muscle. (This was before diagnosis) But I'm still trying and changing things to try and stop the degeneration. Can you recommend what to supplement with?
And thank you so much for uploading this.. I want to believe I can build! I will tell you that not working out is very bad though.. use it or lose it.. faster than if even using it too much, in my experience. I'm not kidding!
Sir can you suggest me
Best diet for muscular dystrophy..?
The title you should say. What type of muscular dystrophy you have. Please. People misunderstanding and think is duchenne. Thanks for your information.
I am a congenital hereditary patient with Bethlem myopathy. Is there a cure for this?
I am unfamiliar with that type. How we they are making advances to combat the muscle deterioration
Hey just wondering if you can post a video with low intensity workouts. I cannot do pull ups like you. Maybe some balancing exercises would be beneficial
I do have a few videos of all low intensity workouts. It focus on bands and modifications that can still help build strength as well as balance. If you go into my channel page I have a playlist of all my MD videos. If you have any trouble finding them or want one for me too focus on in a future video just let me know!
hello i suffer from LGMD and will be posting my version of workouts very soon! I will add balancing in as this is something i too have to practice :) take care!!!
@@emilkaswayy that’s awesome to hear and thank you for your support! I look forward to see those videos in the future it will help many of us. If you need any ideas feel free to see the ones I posted as well!
My brother has fshd muscular dystrophy , he is a very motivated person but I m scared in future things might disappoint him.
I hope the best for him but his motivation will help him on the long run. Taking take of ourselves is a full time job so we need that motivation to help keep us going. Just supporting him will help him out more than you will know!
I am the patient of muscular dytrophy . Now i am 17 my joint mucles are very tight .what should I do bro ? Please help me 😢
I would look into myotonia medication numerologists can help you with that.
I like to use joint mobility as a supplement and that has helped my joint relive some pain and tightness I have it down on my supplementation videos. Also working the. Out consistently and keeping blood flow in them will help it out too!
I've this problem
What should I do?
My husband got diagnosed with myotonic dystrophy when he was 16 he is 38 now its good for me to learn more about the condition he also cant bring phlegm up it gathers on his chest and he brings it up like he is being sick just like to know is that part of the condition also
That happens with me too I feel like at times eating or before bed my lungs gather moisture and I need to extremely cough to release it all.
@@marabellofitnessllc8918 thank you for your answer means a lot
I'm 45 diagnosed 20 yes ago.im still able to workout for about 45 min.im exhausted after along with the daytime sllepiness.any tips on pre-workout suppleness and insomnia
TRT has really helped my sleep and I feel way more energetic! And pre workout amino energy is a good one only about 100-150 caffeine and amino acids which is great for the workout!
How have you been able to work all these years? I was diagnosed when I was 17 and I'm afraid I'll lose functionality by the age of 30? How do you feel now?
@@Абдуманноп-щ8ы I am 30 now and it has just been constant movement and workouts. I really do make my body a full time job. Supplements definitely help, exercise, routin e maaagses etc
I got myotonic dystrophy 2. Just found i my test level was 37 and it has to be 250-700. Will self pinning myself with testorsterone do harm to me? Allways have been pretty muscular.
I would definitely recommend that you talk to your doctor or neurologist to prescribe you delatestryl, which helps a lot with low test. It will get you back to a normal range. That would be the route that is the safest. You could try some test boosters supplements and that will raise it a little bit too.
I have limb gridle muscular dystrophy .I want to build body like you . Can you suggest me anything which can improve z my muscles
Jay Madhavi I really appreciate that! Just starting slow maybe with some resistance bands to start and try to make it harder every month an challenge your self and then with you comfort you could add on some weights. I have a few workout videos that show low impact workouts and videos that have some weight training workouts. Also creatine monohydrate is a great supplement to add every day, you want to take at least 5 grams every day!
Jay Madhavi I really appreciate that! Just starting slow maybe with some resistance bands to start and try to make it harder every month an challenge your self and then with you comfort you could add on some weights. I have a few workout videos that show low impact workouts and videos that have some weight training workouts. Also creatine monohydrate is a great supplement to add every day, you want to take at least 5 grams every day!
Jay Madhavi I really appreciate that! Just starting slow maybe with some resistance bands to start and try to make it harder every month an challenge your self and then with you comfort you could add on some weights. I have a few workout videos that show low impact workouts and videos that have some weight training workouts. Also creatine monohydrate is a great supplement to add every day, you want to take at least 5 grams every day!
i also have limb girdle! I highly suggest doing anything that your body can do and is comfortable with, im starting a youtube channel on this and will have my own workout posted soon!! keep slaying jay we are something else💞
When u going to post again.hows the testosterone doing
Should be this week! If not definitely next
How to have healthy children with this disease
?
That is one of the toughest things I had encountered, I will make a video about the IVF journey soon.
I will wait
Bruh tbh If u were my trainer that'd be good cuz I have muscular destrophy (mylifbular myopothy)
Алан Расул I am sorry to hear that and I hope it gets better. I have some low impact workout videos that may help you maintain the muscle you have. I appreciate your support and if you need anything just let me know!
@@marabellofitnessllc8918 thanks alot I hope ur doing great
ar you MD
Md Rasel yes I have it
@@marabellofitnessllc8918 Brother, I have been suffering from this disease for almost 16 years. What time do you have to get your number?
Md Rasel is there anything you need help with?
You have children?
You dont need god damn diagnosis 😑
I was diagnosed at 27 with distal mayopathy/nonaka myopathy, it is getting progressive but hopefully after watching your video I got inspired. How can I start a gym? I text you on Instagram, if you can help would be great. 👍
Hey man I have FSHD, I’m 22, I found out when I was about 14, I have double winged scapula, and you can see it a little in my face. I played sports through high school, I’ve gained muscle but it goes away very quickly if I don’t stick to my diet and dedicated to the gym. I lost about 40lbs my 8th grade year, that was the first time my body attacked it’s muscle, again a little the last year. I’m now back in the gym 2 1/2 months, I’m sitting at 6’ and 171lbs, I’m getting stronger quick, and have never pushed myself this hard, because I always played the victim, when shit was sore for days I’d fall out of routine and give up. No more though, we are going to keep killing this shit. Keep up the hard work brother, look forward to watching the rest of your videos!
Hey, I diagnosed when i was 16 and now I’m 23. I stopped seeing physical therapist but i want to start exercising again. Can I chat with you here?
there is an exercise group on fb of people with it and some of them are pretty old like in their 60s or 70s still working out! maybe not running marathons but keeping mobile in any way they can and plenty do walk. my moms 60 and has it and hikes and my auntie has it and she bikes alot on her peleton and shes like 48. they both walk pretty well and do everything they want to do. dont let fshd stop you!