Living with Dilated Cardio Myopathy - Update!
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- Опубликовано: 7 сен 2024
- Just another update of my situation with non compaction dilated cardio myopathy (NC-DCM) a genetic heart disease that is caused usually before birth or shortly after.
I apologize in advance for all the rambling, I was trying to hit two birds with one stone and get some exercise while talking.
Thank you as always for the kind and gracious comments, they help me immensely and gives me a purpose making these videos.
Yellow or Hello,
Thanks for the update. Hang in there. I'm sure that I'm not the only one of thinks about you every now and then.
You're in our prayers always.
Good to hear from you. It sounds like you need to live like your 80 years old even when you are not. As far as Emily is concerned, try teaching her stoicism. I am still praying for you to get better here on earth. It is good to have updates.
As I post this message your video was 2 weeks ago. I have thought of you often but life has a way of making you busy. Your update was a shock but a relief at the same time. Keep hanging in there. It's amazing that you are so positive in such hard times. By the way you explain it this might be difficult to achieve but I really hope your life improves drastically for the better. Thank you for all you have done. I miss your great Fedora videos but have learned a lot from your example. Take care!
Great to see you again, keep doing everything you can to get better
Thanks for the update. I’m amazed at your attitude. You’re doing the best you can based on the progression. Only you are aware of your limitations which I’m sure change from day to day.
Great video and Great inspiration and streght. I am 44 and have hearth failure since 2015. Probably caused by arytmia since My teens. Stage 3 now and feeling a lot more tired than before. We have to marching on for our Friends and loved ones. One step at a Time.
I’m glad to see you are up and walking and doing the best you can!
I was just thinking about you, Tuesday, and wondering when you'd find the time (& energy) for another update. And here you are, on Wednesday. Nice you got your exercise. GoPro was OK! Nice to hear your progress. Sorry life is such an uphill effort for you.
Seams like your doing the right things, sending prayers your way 🙏🏻
Hey! Great to see you back again... Don't worry about the background noises, it's nothing compared to what you're going through right now. We'll manage, man ;-) Keep it going, even those exercises!
One option to help with the exercise is a three wheel tad pole recumbent type bicycle. Then you could attach the camera to the bike frame and also carry a lot of other weight on the bike pretty much effortlessly. Get a rack and some panniers and you could do your grocery shopping by bike even if you lost your license. Be prepared. Get a super low gear so you can crawl up hills, maybe a 36 tooth free hub low gear. Keep your gut light and your blood thin. Winter is coming. Try drinking distilled water. Tap water here has been making me feel hot this summer, but not distilled. I suspect our tap water has a high sulfur content that’s causing issues. Try eating watermelon -very alkalizing.
Don’t let yourself be confused on booze.
Hi. Thanks for the update
Stay strong brother
Good that you keep us updated, sir. Try to be as strong as possible and "carpe diem"
Get well mate its 2019 I'm very hopeful you see many years to yet,, my ecg showed a cardiomyopathy but my echo came back all good so I'm happy. But I hope u get wat u need your still a young man.
Glad to hear Ben!!
I didnt intend to show boat about my normal echo results because I can imagine you would want exact thing, but I genuinely mean it hope u get the treatment you need and live your rightfull life, nobody on my father side has lived past 59 due to heart related passed on problems its unfair but it's life unfortunately just hope today's technology can beat these problems good luck fella.
Ben Cooper it makes me feel good to hear when others are doing well despite dilated cardiomyopathy. No worries!
@@FastGadgets I know mate just I felt a bit guilty cause I know you probably hoping for good treatment and success to live a full life which you deserve...my dad is 58 and he suffers with myocardial ischaemia which is a form of angina my family hope he can also get get the treatment be able live a full life much love👍
@@bencooper3127 how are you doing now plz tell.......?
So this it what I have to look forward to
Hopefully not! Each person's journey is different.
At last, you got rid of that awful beard. Being a beard man myself, I'm absolutely sure you will feel better now that monstrosity has gone!!!
Glad to see you seem to be making positive moves forward..
Best wishes....
Hello
How are you doing? Any update on your heart problem?
Hi Pal! I realize just how much that you are at risk but there are perhaps other types of exercise that you can do to at least keep you in tone so as to alternate with and not stress yourself quite so much when dealing with full weight bearing types of exercise! Some isometrics for strengthening and core strengthening, although modified to the point that it won't hyper extend you heart rate, utilizing the small type pedal stationary cycle with smooth fluid leg movements, Utilize your arms when making perhaps Tai Chi type movements in a smooth fluid movements. Just remember this: your legs and arms are in a sense are pumps in themselves, which moves blood flow and so long as you are able to do alternate means to hang on to what you still have, and not OVERDO IT is perhaps the absolute key to survival. I believe that although you like working out with weights, it just might get you into trouble. Especially if you are overdoing it! I could see you utilizing weights to help doing muscle stretching, such as what I've done when i was still in the military. I had severe back trouble back then. I had to customize nearly every facet of my own conditioning to bring myself back to an exceptable level of fitness though on a (medical waiver). I am not suggesting that you do this but these were the example that i set for myself only and it worked for me! You must however be able to reconcile the obvious differences! I would bicycle 1.5 miles to work every morning for a Army formation, when there was P.T. involved i was medically excused from regular participation so that i could do things at my own pace as per the Doc, ie: go and bicycle one mile to the gym and workout, using weights to stretch with, i would then do my sit-ups, pushups and then go to the track and run 2 miles, i would then bicycle another mile back to housing to shower and change, eat and then report to work. The so called routine was in fact what changed things for me and that in itself self-paced me, i started feeling better, stronger as a matter of protecting myself from further injury proved to be successful. I was then given other individuals to try and help out that were struggling and they wern't really happy with me, but they all seen the light and it become a part of their routines. This was merely an example of a set routines that someone could readily adapt to and begin moving forward and maintain what they do have instead of either falling to the way-side or going backwards! By the way, i could run track backward with ultimate ease mind you and that requires good agility and balance and to be able to do it at a sustained rate! Enough of all that, but i must say is you need a good plan that suits you and something that you can easily and readily adapt to! That simplifys things a little so the you don't stress or create further anxiety for yourself too! Somehow i know there are certain types of exercise that you like to do! Just try implementing a different routine and it just might work for you, Mark!
Your routine just might start out such as getting some early morning sunlight while sitting on the back porch and enjoying a cup of coffee if that's permissible, followed by a good hot shower, followed be a light walk of 8 minutes, followed by checking the mailbox, followed by rest, followed by relaxing music and a nap if necessary, followed by some good breakfast or lunch, followed up later in the day by stretches or stretching and isometrics, followed by rest and relaxation; etc! Utilize nutrients as you already know benefit the heart and key in on just trying your best to develop an awareness of what perhaps you shouldn't be doing that could cause more harm too! There are alternate means out there and i am surprised that you haven't been thoroughly coached as to what you may be able to do and key things to try to avoid in your condition. With the predicament that you are in with walking, you might just start back to the beginning, ie 8 minutes the first week, followed by 9 minutes one week later, 10 minutes week 2, 11 minutes week 3, so on and so forth, but if it isn't feasible to do it every day, then do it every other day. The days in between if feasible: stretching and light isometrics and/or stationary light tension, fluid movement cycling and not race horse style! At this point, walking every day just might be to stressful and i sense that already Dude! Hang in there Mark! I am still rooting for you 120 percent! Just be wise as an owl as should be and take great care of yourself! I'll be watching and praying for yah!
Great thoughts on shortening the walk and breaking things up! I’m going to take these ideas to heart! Thank you!
Hello Sir, my 17 month kid has DCM with EF=20%. May I know your EF %
I do have a question. Maybe I missed something, but I could have sworn you were married. No judgement or anything, just interesting in what’s going on.
I think he mentioned this subject in his previous update video (not the one in grand canyon)
I was married, things didn’t work out as expected l. I have an update video out on it before my Gran Canyon video. I took it down but I’ll put it back up.
FastGadgets oh I’m sorry to hear that. Well it’s good you are moving forward. Good luck with everything and keep fighting!
@@FastGadgets stay strong my friend
Spit it out