Lived Experience Forum

[Crystal123]

Reaching out to anyone with a spinal cord injury. I have Incomplete T10-t12 from cord compression at conus. I was compressed too long 6 years ago. I would like to share my living strategies and journey with anyone else with a spinal cord injury:) I am getting a very special brace soon and chatting to peope in the same situation will be helpful:) Thanks

[Historylover]

I don't know if this is relevant, @Crystal123, but can't the hospital or your doctor put you in touch with others in rehabilitation from such injuries?

[ArraDreaming]

Hi @Crystal123 sorry to hear this. I had a nasty bike accident in 2021 and had a suspected spinal cord injury. Thankfully it wasn’t as bad as they first thought, I am ok now but had a long recovery process

[Crystal123]

Hello #Jay5

nice to meet you.

It's nice to chat with other people who are going or have gone through the same thing.

Someone asked me earlier I think here, aren't there groups you can reach out to for sci? Well, there sort of is and sort of isn't. I am a part of a group that chats on and off formed from a course I did online with SCIA but it's sporadic and is more for a general social chat with like-minded people. It's wonderful but not for mental health. That's why I reached out.

I am pleased you are recovered physically.

And very sorry for you having to go through that.

I understand the process and I have alotof empathy for you. Mine was not traumatic injury liek yours

that must have been hard.

Mine was a misdiagnosis and compressed too long, so medical SCI I guess.

My conus nerves were compressed too long for disc prolapse and disintegration and they didn't operate soon enough so i lost everything below the T10-T12 for a while and it took nearly a year to learn to mobilize again to the point now where I am upright on walkers, elbow crutches.

Sadly bladder did not ever come back. Bowel is hit and miss LOL.

I also use a wheelchair sometimes. But I don't like them.

Did you get back on your bike again?

I plateaued for a long time as the care I needed was very limited past outpatient and inpatient physio it dwindled to nothing very very fast.

Because I was misdiagnosed I was also not treated for the correct thing so I missed out on a lot of rehab I should have got, and post-hospital there was not really much available where I was 3 hours west of where I am now.

I was also not prepared at all for the chronic stages of sci, like fatigue, Autonomic dyslexia and spasticity.

Now, I have access to Neurmoves (spinal Gym), Hydrotherapy and Excercise physiology together and remedial massage.

It's great living here.

I am preparing for my Cbrace (a microprocessor hydraulic KAFO-knee ankle foot orthosis. It's a lot of very hard work. At the least it will stop the right side from deteriorating. This is awesome.

But it has the potential for everyone who is lucky enough to use it to increase mobility, balance, and social and daily living participation.

I am looking forward to the possibility of taking steps with alternate feet up and down stairs again. And feeling safer and being able to do inclines. Pretty exciting.

It's being manufactured now.

The whole SCI process has been and still is mentally challenging. We forget how much so, In fact, that is why I am reaching out a bit more and talking to lots of people about mental wellness with Spinal cord injury.

It's also one of my long-term goals to be a case worker and sci disability advocate and help people like me between the transition from hospital rehab and home.

Nice to chat to you:)

[kheldar]

Hi Crystal,

I don't have a spinal cord injury so I can't directly relate. but I somehow stumbled in here anyhow and even though your situation does sound very difficult, your post made me smile. Wishing you all the very best with your brace and I hope you continue to improve!

[Crystal123]

Hi #kheldar, Thanks very much for that:)

[Crystal123]

Hello #historylover

yes you are absolutely right, but the problem is there is actually very little out there for the mental wellness side of it. I did do two courses through SCIA my support coordinators called engage and wrap, aimed at small group wellness, And I do chat with them ongoing but it's limited, it did help a lot but i am reaching out to find other people to bounce off specifically for mental wellness and spinal cord injury. The GP's don't know what to find you, and most of everything they have contact to is costly counselors and psychology, even under a gp plan. Thanks for your reply:)