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.
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
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.
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!
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.
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 .
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😥
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'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!
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!
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?
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 💪
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 😥
@@user-my5fk9mw5l 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
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!
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.
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.
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
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!
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
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
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.
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!
I’m 39 years old and my symptoms came on noticeably when I was 35. I am scared. One minute I could runs sprint jog hop and the next I feel I need a walking stick. I can feel it in my calf’s and now I can feel it in my left forearm. I have drop foot and I walk funny. No parents, no support, I live in Australia and am from New Zealand. I think I have to move back to my country. I don’t get government assistance here. I have worked as a massage therapist the last several years. I am now having to rethink employment. I’m legit scared.
I am sorry to hear this I know how are the disease can be and it brings on hard symptoms. Anywhere you can move for support will be the best thing you can do. Focus on what you can control and see what you can do for any relief!
@marabellofitnessllc8918 Hi Marabello. I didn't know you replied. I actually searched for your channel in my subscriptions so I could watch your videos and remembered I had commented here. It has progressed into my hands now, and my feet. I am in the process of being diagnosed. I am wondering how you are doing? I also have chronic fatigue syndrome which came on before I started getting symptoms in my foot back 2020. I am wondering if you have chronic fatigue syndrome? Digestive issues? Do you still work out and if so, do you get post exertional malaise?
@@marabellofitnessllc8918can you pls tell me what to do?? Is it possible to build muscle? Who do I seek for therapy?? Is there a special type of physio to search for that can help me??
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
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.
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 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?
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!
The title you should say. What type of muscular dystrophy you have. Please. People misunderstanding and think is duchenne. Thanks for your information.
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?
@@user-my5fk9mw5l 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 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
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💞
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.
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!
