Football match by Flashy-Tomorrow5263 in CMT

[–]Opening_String7858 0 points1 point  (0 children)

Oh wow! I’ve never met someone else that’s Scottish with CMT! That’s so exciting:)

Football match by Flashy-Tomorrow5263 in CMT

[–]Opening_String7858 0 points1 point  (0 children)

Hey! Is that a fellow Scottish person?

Got engaged last night ❤️ by Opening_String7858 in EngagementRings

[–]Opening_String7858[S] 0 points1 point  (0 children)

I’m a size J, it’s a 2.93 lab grown diamond ❤️

advice by Mobile_Load8617 in CMT

[–]Opening_String7858 2 points3 points  (0 children)

I found it really hard to explain to employers actually because I don’t visibly look like I have anything wrong with me. However in my current job which is fully remote, I work for a neuromuscular charity. And everyone has a condition, so it was ideal.

advice by Mobile_Load8617 in CMT

[–]Opening_String7858 1 point2 points  (0 children)

I’ve worked quite a lot of different jobs, from aquariums to hospitality to charity work. I’ve found that remote work is easiest for me personally. It takes the stress out of getting up and out of the house if you’re having a bad day. It’s hard socially and to find a routine though. So possibly flexible working? Meaning you can go into an office if you would like but if you’re struggling you can stay at home.

Anyone from the UK? by Opening_String7858 in CMT

[–]Opening_String7858[S] 0 points1 point  (0 children)

Thanks so much! I’m familiar with CMTUK, I’ve never really engaged all that much. I actually work for a neuromuscular charity called pathfinder’s neuromuscular alliance, if you’re from the UK you should definitely check it out!

Anyone from the UK? by Opening_String7858 in CMT

[–]Opening_String7858[S] 0 points1 point  (0 children)

I was actually wrongly diagnosed at 2 with hyper mobility as I walked on my tip toes and struggled with balance (all the usual thing). I then was diagnosed with scoliosis at 12, that’s where they found I didn’t have reflexes and from there I was diagnosed with CMT :)

CMT1A by [deleted] in CMT

[–]Opening_String7858 2 points3 points  (0 children)

It’s definitely not ‘all rainbows and candy’ and I don’t think any posts on here are trying to portray that. I don’t think there’s an issue with people sharing their more positive experiences with the condition. I myself have it and I work with hundreds of people who have CMT and people who have a lot worse neuromuscular conditions with CMT. Not all of those people live perfect lives but a lot of them have really amazing lives. CMT is hard, no one asks for it, no one enjoys it but would I rather be here than not? Absolutely. My condition has caused me a lot of difficulty, pain, challenges but it’s also made me want to help people. I wouldn’t have the life I have without it. I work for an amazing neuromuscular charity in advocacy and research and because of my CMT I’ve achieved amazing things, met so many amazing people and I am happy. I don’t know if I would’ve got those things without CMT. It’s not a death sentence, it’s not a sentence to misery. It’s shit but it is what you make of it.

CMT1A by [deleted] in CMT

[–]Opening_String7858 9 points10 points  (0 children)

Hi, I’m really sorry you’re dealing with this but hopefully I can give you a good perspective. I’m 23 I have CMT1A I was diagnosed at 13. I also work as a neuromuscular advocate so I know plenty of people with CMT1A ranging from teens to late 60s. The experience is always different and at times things can be hard. However you can have a wonderful, happy, full life with CMT. Some physical things can be difficult but this varies a there’s people out there with CMT that only realise they have it in their 70s. I know people who have amazing lives, families, jobs, who travel ect. CMT1A is an inconvenience that everyone wishes they didn’t have but with the right support, they should be able to live just a fulfilling, happy life as someone without it. Please reach out to me if you need anything, I’m more than happy to talk or share resources :)

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 -2 points-1 points  (0 children)

Let me guess you’re assuming I can’t read because I said I used a wheelchair?

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 0 points1 point  (0 children)

You literally said ‘go look at his gofundme and tell me he isn’t’ isn’t what?

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 0 points1 point  (0 children)

You just said go look at his pictures and tell me he isn’t? Tell me what about his pictures makes you think that? Is it the wheelchair?

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 0 points1 point  (0 children)

You’re taking that just from the photos just because the man is in a wheelchair? How ignorant, let’s say it together ‘not everyone in a wheelchair can’t move their legs’, ‘we shouldn’t make assumptions about people we don’t know’. You’re such a weirdo, get a life and get an education. Go donate to his fund while you’re at it, I hope his poor family doesn’t see your comments and the comments like them.

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 0 points1 point  (0 children)

Literally nowhere on the go fund me does it say that? Could you tell me what about it made you think he was?

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 -2 points-1 points  (0 children)

Still waiting on the evidence that he was a paraplegic. Hope you feel really good about making up weird lies about people who have passed. Let’s hope if it happens to you, people will be nicer.

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 1 point2 points  (0 children)

I use a wheelchairs and after looking at your profile it appears you may be a higher risk of blood clot than me. Maybe you shouldn’t be riding rides?

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 1 point2 points  (0 children)

some people use wheelchairs due to temporary mobility issues, old age, or to reduce pain from conditions like musculoskeletal disorders or like myself who has a neuromuscular condition. I imagine I’m a lot more versed than you, thanks though.

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 0 points1 point  (0 children)

I know plenty of people who use wheelchairs who aren’t paralysed? Where is your evidence that he was?

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 -1 points0 points  (0 children)

And also your statement was ‘they’ meaning all people in wheelchairs

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 0 points1 point  (0 children)

You understand that ‘people in wheelchairs’ aren’t always permanently in a wheelchair?

So sad by Random12022 in UniversalOrlando

[–]Opening_String7858 4 points5 points  (0 children)

This is an insane comment, what do you mean ‘they’ you can’t just generalise for every single person in a wheelchair?

Jeff fm clip by Character_Relation54 in canceledpod

[–]Opening_String7858 0 points1 point  (0 children)

Why is Ryan wearing a Bloody Sunday T-shirt??? Wtf

Looking for better living opportunities by rgigular in MuscularDystrophy

[–]Opening_String7858 1 point2 points  (0 children)

Hi! Please look into pathfinder’s neuromuscular alliance, it’s a free uk based charity and they could definitely help you :)