lostmyhusbandtoatank

As someone married to a paraplegic who has been through the same illness as the OP, I'm happy to PM if it helps. The reality is that she won't be the same and needs to let that go. Firstly, the guilt is real for her in having you as a caregiver, because its a role reversal that's hard to take and hard to process. If you can hook her up into enough services that you get to move out of the caregiver role into the role of 'extra supportive grown up adulty type child'. Talk to her about the stuff you're going through outside of being your moms caregiver. Ask her advice about stuff. Ask her how she'd feel if you did something, or didn't do something else - firstly make her feel valuable as your mom, because you CAN do this. Much of the rest of this is directly from my husband. He's 7 years with incomplete paraplegia.

Secondly, encourage her to grieve if she needs to. Encourage her not to be okay. Losing the energy levels you expect to have, the ability to focus and concentrate, task persistence, gaining fatigue and pain and exhaustion and suchlike - you need to learn to make a home for yourself in your body as it looks now. It's less relevant for the OP as he made a pretty decent recovery - an insanely rare one by traumatic cord injury standards. Help her find stuff she can do - my husband and I have very little money but he volunteers a LOT as he's able. Pulls a few short shifts a week doing suicide prevention work. Goes out into the local restaurants and then takes stuff to the local homeless population, visits spinal injury units (ironic because he was denied spinal injury rehab by the Aussie state of NSW, because he had a 'column injury' (it's at lumbar spine )) and helps teenagers, particularly, get to grips with their new injuries and new bodies. He does accessibility consulting for a few buildings each year and works in a few online communities as a addiction recovery counsellor / support worker.

Also, give time to doing nice stuff with whomever is still supportive. Doesn't matter if it's drinking a nice drink through a straw or going out to sit in a forest in a wheelchair. If it's gonna be the new normal, don't avoid it forever or she'll end up alone and depressed at home/

She NEEDS to get past the 'why me' stage. It may be worth seeing a clinical psychologist and getting some Cognitive Behaviour Therapy. It's distracting and wastes time and energy she could be using focusing on getting better. She needs the focus for the hydrotherapy pool (if you don't live near one it might well be worth moving). Search for any grants and organisations that will make your lives easier. Apply for respite care, apply for anything that'll help at all. For you and for her.

We're never going to own our own house. We're 18 days in debt. But having recalibrated our lives we're doing okay by our own standards. We try to help people, we try to bring our kids up to be decent human beings and we try tLife will o spend a few moments of quality time together every day or every few days.

Life will not be the same, but she can have a worthwhile and rewarding new normal. It might be harder, but life normally gets harder for everyone in the end! In the meantime, pushing as hard as she sustainably can with every single exercise for the first 3-4 years post injury gives her the best chance of the fullest recovery.

Wouldn't say it's a hopeless diagnosis! Source: have also had transverse myelitis. Stats show approximately a third of people make a complete recovery, a third get left with a 'small' amount of deficit and a third get left with significant deficit or lack of recovery.

It doesn't really work like that. It's spinal cord inflammation, not a complete lack of HGH for a number of years. That's human growth hormone btw. The guy is just the height he is because some people are!

Question: Do you feel an un-nuanced representation of your paralysis has helped get you more attention, but hurt other people with worse outcomes?

As this is an AMA, please don't take this the wrong way, but I've had transverse myelitis too and it was in my lumbar spine. I have some remaining deficit from it, but while I had to learn to walk again (go parallel bars) I never represented myself as "paralyzed" unless I put "temporarily" in front of it. You had all-over weakness and paralysis only in fingers and toes.

Your summary is just.......I don't know. Maybe I'm cynical but I'm married to someone who had a spinal injury in 2011. I saw what "you will be paralyzed for the rest of your life" and "you will be in a wheelchair for the rest of your life" looks like compared to my own "use for recovery" pathway.

I don't want to disparage what you've been through - I know from my own experienc how scary it is/was, but your language and attitudes actually hurt permanently disabled people. For instance, have you considered how many wheelchair users want people to designate them as wheelchair 'bound' or 'confined'? Almost none. They're a tool - 'wheelchair user' is better.

You say elsewhere you can't imagine what people who are paralyzed forever go through - but apart from sleep paralysis, other forms of paralysis are either specifically designated as temporary or tend to have a duration put on them. You had to learn to walk again because of muscle atrophy, but your story in Mens Health and suchlike presents the headline 'Paralyzed person walks again after rare spinal.....'...in practice I want to flag up that these articles result in people with permanent paralysis being asked things like:

• Are you sure you want to walk again?
• But if he was paralyzed too, then why can't you get better
• Don't you want to get better like DeadlyCords did?
• Why are you so fatalistic? (You should never give up)
• Why have you given up? (You never know what belief could do)

I'm seriously delighted you've had a relatively full recovery. Given your crappy form on your highest lifts from 4 years ago, are you certain your back and shoulder problems aren't partly from weightlifting? I just wanted to flag these things because apart from the language used, something I'm putting down to age and context (you were 17 when it happened, hey!).

I notice the genuine concern you have for people with enduring disabilities, specifically paralysis, so this is why I mentioned it. I hope I come across as trying to help - it's close to 4am in Sydney so I may just be a ball of messy blather!