Muscular Dystrophy

It's a daily thing I wake up go to the bathroom then the pain starts. It feels like I was hobbled over night because my ankles,my feet, and calves are dysfunctional causing feet and hand deformity. The genetic disease i have will progressively take out all type 1 skeletal muscles.

There is a cardiac involvement but I'm awaiting to see Cardiologist at Cedar Sinai to evaluate the pathology of my variant.

Ten yrs and eight spinal surgeries gave way to neurogenic muscle atrophy and beginning this year finally diagnosed with muscular dystrophy at 58yrs old. I have been wearing full leg braces due to bi lateral foot drop for over 15yrs.

Don't know why I posted such a detailed description and to whoever reads this I'm grateful you took the time.Sometimes because of my age I don't think me or my condition is important and that if there is ever a cure or treatment for this rare affliction it should be for children and congenital complications.#OCD #BPD #chronic pain#myocodritis #MuscularDystrophy #Peripheral neuropathy #MDD #

Today one of my friends,well pretty much my only friend, is coming to visit me on his birthday because I can't drive the two hours to his house. When I became disabled with a chronic illness I lost half my friends right off the bat . No one had any patience or concern when I went through 8 spinal surgeries and when I bought a house with my mom they all resented me for getting ahead financially even though I'm permanently disabled with late onset muscular dystrophy.

I guess my point is to hang on to the friends you have left for someday even those will be gone.

I know everyone has a story about estranged family people who are blood related that have abandoned is . My 31yr old son has been on and off drugs for the past ten years and now he is sober so he is reflecting on how he treated his 58yr old disabled father. About 5 yrs ago we moved in together with my mother and mom and I tried to help him but it was no use and the day before my last lumbar fusion he called from jail he got busted for dealing hard drugs and wanted me to bail him out but I said no after all I had just given him a truck with a new motor so he could work. The only thing he use it for was to deal drugs idiot.

Now he a wants to start a relationship with me and mom again but I'm worried that he will break my heart again or create trouble with Mom who is 85 and now I've been diagnosed with muscular dystrophy so in order to protect my heart and my mom I said I didn't feel like having a relationship with him for many reasons.

My heart still hurts so I don't know if I'm doing the right thing I only know I can't go back to the turmoil. Love for a child never goes away so it makes it so much harder.

Don't think there is ever a clear answer.

I'm new to this group I'm not big on hashtags but I joined because I have late onset muscular dystrophy from a genetic pathogen. Sometimes it's good to see how others deal with multiple mental and physical disabilities. Thanks for letting me join 🙂

How we react to life changing diagnosis is probably as important as how we manage our physical and mental symptoms. After years of spinal surgeries at 58yrs old I was diagnosed with late onset muscular dystrophy and I was devastated. After years of Neurogenic muscle atrophy from pinched nerves I gradually had to wear full leg braces to keep mobile. Now all my skeletal muscles are deterating along with a muscle in my heart.

I lived in the moment for a long time that after all it looks like I'll be in a wheelchair and the hand and foot deformity was getting me down because the disease is on its way to make me a quadriplegic.

Then one day I started to finally face this obstacle in my life the suffering the frustration with medical appointments,and that I'll be in pain until the end.

I found that music and light gardening was acting as a fantastic distraction to the ailment at hand and there was a way to change my attitude a way of acceptance that soften the blow of what I been dealt.

After all with all it's ups and downs it is an amazing thing to be human to be alive and we keep our heads held high and push on.🙂

I am glad to be back at the Mighty I've lost my way in life so many times, so I look for answers in every direction. I have had late onset muscular dystrophy 5yrs now and I'm slowly losing the use of my skeletal muscles I wear two full leg braces to get around and the pain is sometimes so bad you just want to end it. But you don't end your life because of persistence and how can you let something take that much control of your life which is easier said than done. I wake up and within 5 minutes I am in horrible pain every day especially the last 5yrs.

Don't ever give up because of chronic pain and illness you can find the strength to make it another day.🙂❤️

Hi, my name is drpriya.

#MightyTogether #MuscularDystrophy

Hi, my name is Dhritiraj Deka. I am a 23 years old Guy from India suffering from Muscular Dystrophy. I joined MightyTogether to connect with people who suffers from Similar health and social problems like me.