Join the Conversation on
172 people
0 stories
158 posts
Explore Our Newsletters
What's New in SMA

caregiver burnout #SMA

I’m frustrated taking care of my mom. not only do I have to help her in out of bed and take on and off her lympadema machine and charge her wheelchair but I have to pretty much everything around the house except cook. but I have to get everything out so she can cook. I’m just tired of doing everything. I can’t do it anymore. it’s been 12 years and it hasn’t gotten any easier. I don’t know what to do anymore. I can’t reason with her. the one time I asked very nicely if I could get her into bed earlier because I had a phone call that night she screamed at me. I’m 20 years old and I feel like I can’t do anything because someone has to be home to do everything for her. I’m so frustrated I don’t know what to do anymore

2 reactions 1 comment

What is your least favorite part about being different than the majority of society?

Mine’s probobly the pity looks I get because I have a wheelchair, and the fact the people think I can’t do stuff for myself and over help.
#SMA #Anxiety #Depression #CheckInWithMe #DistractMe #EhlersDanlosSociety

See full photo

If you could go back to any age for a day

If you could go back to any age for a day, what age would you go back to? #CheckInWithMe #SMA #ADHD #Ehlers -danlos #Depression #Anxiety


I need people who can relate not with 1 thing, with evryting

#ChronicPain #ChronicIllness #MentalHealth #Suicide #Depression #Selfharm #childhoodtrama #PTSD #trama #BPD #BorderlinePersonalityDisorder

I was sexually assaulted when I was in gr.5. From there, things just kept adding to the trauma in my life... not that I had a bad family, but certainly a lot of trauma throughout my childhood- teens. Hard to think back on it all right now. I was also sick a lot throughout those years. Missed a lot of school, and eventually started self harming when I was fairly young. At about 16 I was admitted to a psyc ward for the first time. When I was 18 I finally found a medical dr that thought he figured out why I was sick so often. I was diagnosed with #SMA syndrome. Had my first major stomach surgery shortly after. Then another not many months later for a blockage that caused from scar tissue. Found out SMA was a misdiagnosis. A 3rd for what they thought was a blockage, discovered it wasn't after opening me up, so decided to take out my appendix while there. 4th for another blockage for scar tissue. Told it will happen again and again for the rest of my life. Throughout all that time spent in hospitals (one of the times was about 6 months in hospital) being fed opioids non stop by iv or im, I no doubt gained an addiction. Which had lasted many years, with breaks here and there. Had a nearly 2 year stretch going on for a bit. That stretch started with a stay on a medical withdrawal unit, starting on suboxone (which also ended up helping with the chronic pain thankfully) and not long after, my 1st stay on the womans unit at camh in Toronto. Got my first experience of ECT. Had a little slip up and about a year later went back for another stay there, until they found my marijuana edibles, kicked me out and told me to never come back. After getting a bit more ECT. Oh and before ever going to that psyc hospital, I was admitted to my local psyc intensive observation unit. More times then I want to admit. What a horrible place to say the least. My local hospital has traumatized me in so many ways, medically and mentally. I even stayed at a psyc unit in another city about an hour away. Also, not great. Better then my local one though. Anyway... things got a bit better about a year ago... I managed to work for the 1st time in over 10 years! Too bad it didn't last long before my physical illness acted up again pretty bad, and my mental illness followed. The last month has been a bit of a struggle, and I'm at that point again where i just want to end all the suffering once and for all, for i really don't know if i have enough fight left in me to make it through anymore. I would like to just have someone i know has been through very similar things, not just one similar thing, someone who really gets it, maybe someone even closer to my age (30), someone who also doesn't have kids or grandkids that give them such a big reason to keep fighting. How do you fight when you have been fighting for what feels like forever?


I Hate Writing

Hey, everyone!

Sorry I haven’t posted in a bit, been working on articles for my website. Hope you’ve all been doing well!

Wanted to let you know about my new article on my website, My RemARCs. It’s titled “I Hate Writing” and is about my journey from hating to write to where I am today, loving it and trying to make a career out of it! Would love if you’d check it out and give me your feedback! I’ve added the link below.

Thanks so much, can’t wait to hear your thoughts! Also, I promise I’ll post more consistently from now on.😁
#liveremarcably #myremarcs #SMA #SpinalMuscularAtrophy #MuscularDystrophy #RareDisease #WritingThroughIt #Writing #TheMighty #Disability

See full photo

Check In

One thing I’ve learned in the past few years is that it’s important to have people in your life who are there for you.⁣

Family is great. Nothing can replace them, and they’re definitely always there when you need them... and even more so when you think you don’t need them.⁣

God is number one on the list of people(?) who are there for you. He’s always there. Even when you think you can’t see or hear Him, He’s there quietly working and waiting for you to give everything over to Him.⁣

But God also created us to need friends. To need someone to share our lives, experiences, ups, and downs with. Someone who will simply check in on us. It doesn’t always have to be a best or close friend, sometimes it’s just someone willing to take the leap and say, “hey! I hope you’re doing well. How was your week?”⁣

So this is me being that person. This is your end of the week/beginning of a new week check in.⁣

How was your week?⁣

What’ve you got planned for this week?⁣

Let me know below, and I hope you’re doing well!⁣

#liveremarcably #myremarcs

#whatsup #checkin #checkup #checkonyourfriends #familyisforever #Family #Friends #BestFriends #Newfriends #bffs #god #Godisalwaysthere #NeverAlone #takealeap #leapoffaith #Weekend #newweek #Newstart #sunday #SMA #SpinalMuscularAtrophy #wellness #letstalk #writer #Blog #website #disabilty #RareDisease #MuscularDystrophy

1 comment

What UVA Basketball And Having SMA Have In Common

Wrote this article about a month ago for the first post on my website, about my life with Spinal Muscular Atrophy and how I found similarities between it and the University Of Virginia Basketball team. Would love for you to check it and hear your thought!

#SMA #SpinalMuscularAtrophy #liveremarcably #myremarcs #uva #virginiacavaliers #Basketball #Disability #RareDisease #Wheelchairlife


Finally On #TheMighty

Hey everyone! So glad to finally be here on The Mighty, I’ve been reading the articles for a while now but for some reason never joined.

Just to give you a quick rundown on who I am, I’m a late 20 something guy who’s into movies, tv shows, sports, art, writing, and chillin with a cold whiskey and ginger. I was born with a disease called Spinal Muscular Atrophy and, because of that, have used a power wheelchair since I was two. I haven’t let it stop me or get me down, I went elementary, middle, and high school and graduated with an advanced diploma. Unfortunately I wasn’t able to go to college because of declining health but, instead, I watched and read and learned as much as I could/can on my own. Just in the last few months I’ve started a website called My RemARCs where I talk about my life with SMA and how God, my family and friends, and a sarcastic sense of humor have helped me to navigate this crazy, messy, beautiful thing we call life. I’d love to have you check it out! You can also find it on Instagram, Twitter, and Facebook at @myremarcs .

So now that you know a little bit about me, tell me what some things are that I should know about you, The Mighty, or who/what I should follow! Thanks!

#SMA #SpinalMuscularAtrophy #liveremarcably #TheMighty #RareDisease #Wheelchairlife #Disability #Faith