r/MuscularDystrophy

Still nothing to help ? There must be something someone is using to help with strength fatigue etc there must be something for people like us

After a lot of thinking I’m going to take my life back and get some things in order and then I will trying to get my own place and caregivers so I can enjoy my life without being stuck in house full of negativity. I want to get a job that will hopefully get me out of the 2000$ range and keep me stable with great care and all that stuff that I need

My brother just got diagnosed with the MD that won’t kill him and it’ll take a few more decades before he will need a wheelchair. He’s had it since his 20’s and didn’t know but he’s in his 30’s now. He has no other health conditions and he works from home at a computer making a solid income. He’s a homebody that loves video games and magic the gathering. He’s been making jokes about it and staying optimistic. Seems pretty chill with it overall. I want to know what I can also present to him that’s actually a benefit he’ll love. What are the upsides he can access now that he’s diagnosed disabled?

Is there a cheaper grub hub?
He’s already getting a better nicer ADA compliant apartment.
What other free/cheaper stuff can he now access to really enjoy the perks.
Are there reduced cost home cleaning services?
What free stuff comes with this diagnosis?

If he has more money for retirement, magic cards video games, and DLCs he wants to know.

I made a post a couple months ago about my care giver (my mother) needing a break, unfortunately I don’t think that a break would help her. Over the past couple months I’ve have been trying to be calm and understanding but I literally can’t, my mom gets on my case about everything and all she does is complain about me and calling me vulgar words, the worst thing is the nursing home threats. I love my mom but lately it feels like she views me as a burden, I feel like she doesn’t like me anymore. I just can’t take it anymore because after a while it gets draining mentally because it’s everyday to this point, the worst part about it for me is that my own family members talk about putting me in a nursing home. I fear nursing homes because they pretty much take all your rights and money away. I just hate that when I lash out after taking so much disrespect and then getting called a jerk and a bunch of other things, like I don’t a 20 year old should be told to be respectful or get thrown in a facility. I just feel like a child and burden these days

I have LGMD thats mainly affected my arms and range of motion but It hasnt really gotten in worse in years..honestly most ppl wouldnt even know I had It unless I told them, and ive been able to preserve the muscle I do have, outside of when it attacked my biceps, my traps and and shoulder muscles as well as all leg muscles are still there, im 42 and I got diagnosed in my early 30s, as horrible as these disease is i am thankful it hasnt gotten worse.. I do take creatine daily as well as leg and arm exercises to keep my arms good and stretched(something my doc recommended)and the leg exercises have helped strengthen my hips

I have LGMD Type 2B and I know it affects the shoulders and hips but can I still grow muscles anywhere else on my body or basically nothing can grow anymore. I can still walk, stairs are difficult but can be done if I have handles but I just want to look better in myself even though going through this. Thank you

Hello everyone,

I’m a 20-year-old with SMA type 3, using a wheelchair, and I had scoliosis surgery that unfortunately made things worse for my body. I often wonder how people like me manage their everyday routines. And I mean the more sensitive parts too, like how you go to the toilet, how you wake up, how you prepare your food, how you shower, and things like that. These are questions we feel shy about asking, but sometimes just knowing others go through the same things can make us feel a bit more comfortable.

I’ll start with my situation: I basically can’t do anything on my own, unfortunately. I need a family member to help me with almost everything, getting up, changing clothes, going to the bathroom, showering, preparing food (thank God I can eat on my own).

Recently, I tried to find a solution for the toilet issue (at least for peeing). I thought about getting special pants that open easily and can be closed again, but I couldn’t find something that really suits me, and it also requires a bit of strength to use. (This might be an idea for people who have a bit more arm movement.) I also saw a device called the JACO robotic arm, and I’m seriously thinking about getting it since it seems very useful.

I also want to continue studying abroad, but as I mentioned, I can’t really do anything by myself. So if anyone here is living independently, please let me know how you manage. I’ve also heard there are agencies that can take care of you at home, which could be really helpful. Keep in mind I’m from Tunisia, and if there’s a chance to study abroad, it would most likely be in France.

That’s all I have. I know I didn’t really provide solutions, I’m still looking for them myself. So please share your experiences with me. It would help me and others a lot.

My left leg spasms every night and it’s affecting my ability to sleep so badly. I’m already on 300 mg Gabapentin so maybe I should up the dose at night…I did a trial run with Baclofen for spasticity and I feel like it sort of helped my restless legs but it took me out during the day so I stopped taking that. I plan to bring this back up with my docs but am wondering what has worked for other folks if anything at all? I need to be able to sleep at night, ugh

I’m 34 diagnosed at 33 with BMD and after my Heart MRI it showed early signs of cardiomyopath. My ejection fraction is mildly reduced but the MRI did show quite a bit of uptake (meaning fibrosis/scar/edema). I’m at a higher risk for ventricular arrhythmias and the doctor said we typically treat this with an ICD. If anyone has similar issues or know anything on this topic i would love to hear from you. We never have to quit fighting if it’s our time I’ll go out with my head held high. Hope you all are doing ok.

Hey everyone,
I have Bethlem myopathy, and I’m thinking about taking creatine because I’m wondering if it could make my muscles look a bit bigger or fuller.

I know I’m not going to get the same results as someone without a muscle condition, and I’m not expecting a dramatic transformation. I’m just wondering if it can make a noticeable visual difference and help my muscles look a little more “normal.”

Has anyone here with Bethlem myopathy or another myopathy tried creatine?
Did you notice any visible increase in muscle size or fullness?
Did people around you notice a difference?
Were you also doing resistance training, or were you just taking creatine?

I’m mainly interested in whether it made a visible difference in appearance or if, for someone with a myopathy, it wasn’t really noticeable.

Well it's been like 10 years being diagnosed with DMD. Kinda have to say it sucks caring so much when I'll pass over. Religion or no religion, who isn't scared to pass over to wherever we end up or think we end up. I feel no positive outlook or things I want to do before this precious life end. But I think, hoping for a cure? Idk. I'm 19, able to walk, can't imagine the day my legs finally give out... 6 more months or so I'll be 20 and walking... Frustrating to think that simple things like losing weight

(I'm obese; not helping me walk) I have to consult google or my doctor. Some things limit what I choose to do, that sucks. I'm tired things I used to do, I can't do them now. Stigma on men huh? I can't have the chance to even be one and I'm surprised still my parents hold on to their traditional values? How do you expect me to find love and have kids? Only thing I like to do is lay in my bed and doomscroll, idk how long I'll live right? Welp. Thanks for reading, I am venting it out.

I went through a partial nerve conduction and emg earlier at the hospital. I got through the needle part but didn't get through the shock part.

They kept shocking my neck? He was trying to check my shoulder he said but they kept shocking my neck over and over and it got so intense I had to stop for a moment.

The doctor said everything was in normal limits and acted like he had enough info. He even said anymore shocks would be "extra". Come to find out when I checked my results later it said that they only had partial results and didn't get to finish the test because I couldn't tolerate it!

I felt like he was just impatient and wanted to move on!

I'm upset. I felt they rushed and if I could have rested a bit I could have gotten through the rest of it. I feel like the doctor wasn't listening.

And I am so confused as to why they were shocking my neck (making my head jerk to the side over and over) instead of shocking my leg muscles or even my arms????

And no answers from this. I feel defeated. I asked about genetic testing and he said it would be up to my doctor but that it's really hard to diagnose from genetic testing.

Some days I feel like what is the point of doing this.

Some notes about me:

-Lifelong muscle weakness and fatigue, gotten worse the last few years (I'm 44 now) have immense difficult walking up stairs or hills or with exercising. Have muscle weakness when I raise my arms over my head and some facial weakness (can't smile fully).

-My mother had profound muscle weakness her whole life.

- My neurologist suspects congenital myopathy or myasthenia but ck is normal and now nerve conduction is normal. Partial emg was apparently normal.

- Waiting on fshd genetic testing but that'll probably be normal like everything else. (Just feeling so cynical lately, sorry)

- Would like to get full genetic testing one day

Did I mess up? How helpful is the shock part of the test? Should I try again one day? (If insurance will even cover that) 😭

Guess I'm just writing this to vent mostly. But I welcome any experiences or knowledge anyone may have.

Has there been any interesting progress as of late? How has funding changed over the past few years?

My godson is going through an experimental gene therapy, and his mom (my best friend) has been out of work for months because she has to stay on call for him. He’s expected to spend 2–3 months out of state for treatment.

His medical care, transportation, and treatment are covered, but she has no income right now. She said something that hurt my heart "I'm just trying to exist without costing anyone any money" I’m trying to help her find any resources that support caregivers in situations like this, especially in Louisiana, where she's from and Arkansas where she's about to spend months of her life, with no income.

What programs, nonprofits, or assistance options should we look into?

I unfortunately wasnt picked for the Canyon or Grand Canyon study, and I was wondering how people are tolerating the medication and what kinds of benefits it might be providing.

Hello, we have our first appointment with a neuromuscular specialist coming up. I discovered my eight year old son has high CK levels (11,000) and the doctors are suspecting muscular dystrophy. I was wondering if anyone has advice on what we should expect for the first visit and also what information/questions we should come prepared with.

Thanks!

We already struggle with a lot both internally and externally. And what we need is being surrounded by positive people. It’s been one year since I’ve been in this dark place of life. I moved back home from uni and thought it would be better for me to have my family around, so I would feel less lonely. That was all wrong. My mom literally told me that she’s ashamed of me because of this disease. Mind you, I got this because she passed down the genes she carried. She said she want me to get away and not be a burden. I do everything by myself, and stay in my room most of the day. She isn’t the one driving me places. I don’t have a job yet, and I don’t know where to go. Have someone been in a similar situation? I would be grateful for a few nice words

my brother is a patient of DMD. I remember going to this workshop where many other kids with same disability came.

There was this child who was crying a lot, so my mom asked his mom that why's he crying. His mother replied with "he just a few days ago stopped walking completely. He was standing and was calling out to me to help him with something and suddenly he felland since then he hasn't been able to stand up anymore. So he blames me for not coming and helping out"

I was right there beside listening, I started crying so bad. It's just so so so sad that yesterday he was walking on his and and everything was fine and today he just can't walk even if he wants to he's trying to buy his body is just not moving. Just thinking about it made me so sad and he's living it.

life is so cruel.

my heart goes out to everyone suffering from dmd including my brother, i miss you and I love you to the moon and back.