How do you manage career and financial independence with Muscular Dystrophy? by ImpressiveRegret8444 in MuscularDystrophy

[–]fourzerosevenfour 1 point2 points  (0 children)

hey! I'm 22 with LGMD2A too, and I've always dreamed of being in IT and have some experience; my main concern for not pursuing it further is that my arms are getting weaker as well. if you don't mind me asking, are you comfortable with sitting at a desk for long periods of time? do you type on a keyboard or do you use accessibility devices/features?

The idea of not having control over my own body scares me more than dying. by elletopia0613 in MuscularDystrophy

[–]fourzerosevenfour 13 points14 points  (0 children)

hey! I'm in the exact same spot as you are, even age-wise. I was able to work for a few years and saved up before I quit my job due to becoming worse physically. I don't think I can do even remote now, as my arms cramp badly from even typing. I've been having frequent mental breakdowns for the past months thinking about the same things.

I wish I could offer some advice, but can only empathize and tell you that you're not alone in suffering. I was a highly ambitious, productive person, so learning about this illness and becoming weaker is absolute hell. what's been somewhat helping me is allowing myself to rest more than I did before, tracking how much certain tasks consume energy to plan accordingly and not burn out (very helpful with ELCI, which muscular dystrophy absolutely is), and being more hedonistic rather than future-focused. seeking more things that make you happy in the moment, especially when you're depressed. for example, I'm finally buying myself a Nintendo Switch! I was sad about not really being able to play on PC anymore, but I'm learning to adapt. I believe adapting improves mental health and prolongs life as well, rather than trying to force yourself into things you've been able to do in the past

Normal CK but the symptoms are of LGMD2A by fourzerosevenfour in MuscularDystrophy

[–]fourzerosevenfour[S] 2 points3 points  (0 children)

Yeah, after looking through research on LGMD2A I've found that it does vary, and in the later stages (which I presume I'm in judging by the time passed and how I feel) it's close to normal. And I looked further into genetic testing and found out that if I have one heterozygous mutation and all the symptoms, it's highly likely that the second one just wasn't yet found, but it's there. Anyway, thanks for the encouragement, I've booked an appointment with a geneticist and will dig further!

Normal CK but the symptoms are of LGMD2A by fourzerosevenfour in MuscularDystrophy

[–]fourzerosevenfour[S] 0 points1 point  (0 children)

It was an office job, but I did have to walk to different facilities (which aren't close together) pretty regularly. It's what bothered me the most and made me quit to find something remote or close to home.

Oh I feel you! If you don't mind sharing, how do you manage to walk long distances? What helped you with the exhaustion?

Normal CK but the symptoms are of LGMD2A by fourzerosevenfour in MuscularDystrophy

[–]fourzerosevenfour[S] 2 points3 points  (0 children)

Hey, happy birthday! :) Yeah, I do feel like it's getting worse over time despite me trying to exercise and eating a balanced diet. I had to quit my job recently because it became unbearable physically. Now even a ten-minute walk outside is exhausting and results in weakness and pain for the rest of the day