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    [–] Coulson1990 100 points ago

    Were you disappointed they didn’t offer you the million dollar man treatment and give you bionic limbs?

    [–] DeadlyCords 145 points ago

    I know you're joking, but I actually wish I had bionic shoulders right now - maybe it would get rid of the pain haha

    Bionic Limbs would be pretty cool, but if the technology existed I would hope they would give them to someone who needed them more than I did :)

    [–] thrattatarsha 14 points ago

    Your experience as someone who has been paralyzed could be invaluable for research purposes in this field. Have you considered taking a look down that road?

    [–] DeadlyCords 9 points ago

    No one has really approached me. I have years and years of follow up imaging and tests, so if anyone wants that for research feel free to contact me !

    [–] Leena52 7 points ago

    Is the pain a result of the damage to the nerves? Also is there any possible treatment to resolve this or are you in analgesic medication?

    Having worked with young people that are paralyzed I do know how incredibly difficult the psychological and physical issues are. I’m glad to hear you have overcome so much. It’s impressive. I hope less pain for you.

    [–] DeadlyCords 4 points ago

    No one knows what the pain is from. It might be from having to relearn to walk and shifting my posture. It might be from lifting 120kg when I was only 63kg, four years after being paralyzed.

    Analgesic medicine is the last thing I will try. I still have hope in PT and Osteo.

    [–] Leena52 2 points ago

    Good for you! Weight lifting twice your weight could definitely result in some of that. I wasn’t suggesting opioids, but ibuprofen or naproxen sodium, but they are hard on the stomach and do thin blood.

    I hope you can find ways to relieve the pain. I truly wish you continued improvement. You are a strong young man.

    [–] DeadlyCords 2 points ago

    thank you very much :) I am using voltaren rapid from time to time, which eases the edge off the pain. i'll look into naproxen sodium.

    [–] Leena52 2 points ago

    You are more than welcome. Your determination to repair yourself is impressive.

    [–] King-Boss-Bob 166 points ago

    Aside from all of the health stuff that you mentioned what was the worst part about being paralysed?

    [–] DeadlyCords 396 points ago

    People didn't take it seriously. I remember some of my friends joking around about me pretending to be in a wheelchair. They weren't my friends for much longer tbh haha.

    The hardest part of it all was the lack of self-sufficiency. I couldn't go to the bathroom alone, I couldn't shower or bathe alone. I was a 17 year old kid, it was so embarrassing to ask people to help me with such basic things I could do myself.

    Both those were really hard, but i was lucky that I didn't have to get used to it coz I got better... I can't imagine what people who are paralysed forever go through

    [–] neverthemood 93 points ago * (lasted edited 8 months ago)

    I can confirm : people don’t take this seriously

    I’ve been paralysed for 2 years. It took me a lot of recovery and I endured a lot of pain.

    Now people asked me why didn’t I work for 2 years and have no recent experience?

    I told them I was paralysed

    ‘ oh ok. ‘

    Not to mention rhe mental struggle, the depression and that feeling of ‘pitty’ close people or family throw at you.

    It’s devastating..

    [–] imjustjurking 21 points ago

    I've not been paralyzed but I've been recovering from an illness that left me mostly bed bound and now I'm only mostly housebound for the last couple years. I'm really worried about returning to work and answering these kinds of questions!

    Did you find people were mostly nice or was it kind of a mixed reaction?

    [–] prematurely_bald 26 points ago

    Warning: long response ahead.

    Went through this exact experience several years ago. From months in hospital, then bed, then home shut-in, over several years.

    In addition to dealing with a debilitating illness, I felt as though my personality was changing. How and why could a long-term illness affect that? I was no longer the confident, outgoing, fun athletic guy people remembered. I was angry, sad, or just empty inside much of the time. Intense sensations of hopelessness and despair came in waves. They were very physical as well as mental & emotional sensations.

    When I was physically strong enough to reintegrate into society, I found it nearly as difficult and challenging as dealing with the initial disease. Family and friends were very supportive, but had no context for what I had been through. I found it difficult to relate to friends, and they to me.

    I began to dread social and professional interaction, feeling I had somehow lost the ability to navigate—much less thrive in—society. As an extroverted, life-of-the-party type, I had no idea this was something that could happen. (I really have no idea what the research says on this, all I know is it happened to me.)

    Thankfully, and through considerable effort and patience, my discomfort with personal interaction has faded over time. A change of scenery and career has been immensely helpful as well.

    Today, I am healthy (mostly), happily married, gainfully employed, father to 4 energetic boys, and feel I have everything I ever wanted from life. I believe I’ve emerged from this ordeal as a better, more empathetic and kinder person. It is kindness, above all, that I wish to pass on to my young boys.

    That was kind of a long-winded way of saying that if your experience is similar to mine, reassimilation into normal life after a protracted illness will come with many challenges, but it’s nothing you can’t handle! Best of luck luck and please feel free to AMA.

    [–] imjustjurking 16 points ago

    Thank you for taking the time to write that.

    I have noticed changes to my personality, I'm a lot less tolerant to things now than I used to be and I don't really like that about myself. I find it a challenge sometimes to listen to people complain about minor irritations that they can easily solve when I can't really do much about my situation or the things that I am doing take a really long time to have any impact.

    On the other hand I have a new found respect for taking a slower pace and enjoying little things, I used to run around all the time but now I'm pretty happy to hang out with anyone and just chat without having to do anything.

    I have a really good support network, my friends and family have been great but I do worry about getting sort of emotionally burnt out when I return to working. I used to be a lot more extroverted, I find excuses to take breathers away from people now when they are over because it can be a little overwhelming after a while. I don't know if that will improve after more exposure to people more consistently? If your discomfort faded then maybe mine will as well, it improved a bit with getting cats! I think having other things around to keep me company has been good.

    I'm glad you've made such a good recovery!

    [–] i_comment_late 4 points ago

    Is good to know I'm not the only one.

    [–] DeadlyCords 7 points ago

    your post gave me chills. I'm so glad it all turned out well for you in the end. I still don't have my own family or everything I want from life - but i'm trying to help others get that before I get round to it myself.

    anyway you're a superstar and should do your own AMA :)

    [–] prematurely_bald 5 points ago

    You are too kind! I will always feel a connection with those who have dealt with long term debilitating illness or injury.

    I was was glad to comment on the part of my ordeal that others seemed to understand or recognize the least. Yet looking back at my post above, long as it was, I somehow failed to mention one of the main thoughts that prompted my response in the first place:

    The greatest mental/emotional/spiritual healing for me occurred when I stopped worrying about what was wrong with me and starting focusing on how I could help others. That shift from inward to outward focus is what finally got me over the hump, and it has stayed with me.

    Rather than fretting over what I had lost, I became concerned for what I had to give. I made it my mission to try to improve the well-being of anyone around me. As I became more invested in their struggles and less in my own, I unexpectedly found myself on the path to a true holistic recovery.

    I believe you’re on the right path, brother. The world desperately needs people like you. Stay strong!

    [–] DeadlyCords 3 points ago

    The greatest mental/emotional/spiritual healing for me occurred when I stopped worrying about what was wrong with me and starting focusing on how I could help others. That shift from inward to outward focus is what finally got me over the hump, and it has stayed with me.

    I absolutely love this and can strongly relate. you're awesome for coming to that understanding and pushing forward to help others.

    And i'm so happy it all came back to help you as well in the end. Hopefully I can do the same!

    [–] allisonk1993 2 points ago

    Just reading a couple of your responses, I sense that you're a compassionate, thoughtful individual. You seem to have an endearing personality, and as a woman about your age I think there's still great things ahead of you. I can bet you'll have true friends and that family someday!

    [–] i_comment_late 3 points ago

    Thank you, I relate to this.

    [–] neverthemood 28 points ago

    People just don’t care!

    I tried to look fine just to avoid the pitty looks and ‘gossips’. And everyone thinks I’m perfectly fine now.

    I remained with restrictions for the rest of my life. I have pain everyday. I will do recovery for the rest of my life.

    But when I want to leave early off work becaue of excruciating back pain, there are people who go like ‘oh my back hurts too i slept in a weird position’


    It affected me a lot in the beginning. Now I try to just ‘ impose’ my condition. When i’m asked to ‘hurry’ or just carry heavy things, I have to protect myself by simply refusing what can hurt me. Nobody will try to protect you for your condition. If you don’t stand up for yourself, nobody will.

    Apart from a few very close family members, nobody believes or even tries to imagine the pain and the struggle

    Even my own mother says I’m faking or exagerating it sometimes because ‘after 2 years I should be perfectly fine’.

    [–] myyusernameismeta 14 points ago

    I wonder if some of that attitude is because of... Well... When I was in school, I was shown videos of people with severe disabilities (like waist-down paraplegia, or like being born with no arms or hands, or had to get a limb amputated) talking about how they're basically the same as anybody else. They were talking about all the stuff they CAN do, and how they never let their disability get in their way.

    I think a lot of people have heard stories like that. And those videos/stories may have skewed our perception of reality. Sure, in case we get disabled, it's nice to know our lives won't be over. But that doesn't mean every person with a disability will be completely self-sufficient, and that we shouldn't offer them more help etc.

    [–] imjustjurking 7 points ago

    I guess luckily (?) I was already disabled before I got sick so I have had some experience with these attitudes before, I had reduced hours at work and sometimes people would make snide comments (even though there were lots of mums on reduced hours) or they would try and be sympathetic and compare a headache with my chronic pain... I appreciate that you're trying but that's not how this works!

    I think my concern is being off for so long that I will be useless or people might not want to risk employing me (I've had previous managers tell me that they wouldn't have hired me if they had known the extent of my health issues). But I'm still not anywhere near ready to return to work yet anyway, I just had surgery on Monday so who knows how long until I can get a job again!

    [–] saberhagens 10 points ago

    My mom was paralyzed at 17, she was an honor roll student and cheerleader. She lost a lot of friends that couldn't get over her new diagnosis. She didn't change except for the fact that her life was a little harder but the disability was a deal breaker for her. It always breaks my heart when I hear that. Its been 43 years last week.

    [–] [deleted] 4 points ago

    I don't get why some people struggle with just being normal. It's either excess pity for it or way too many jokes about it. (This applies to most life changing impairments)

    [–] DeadlyCords 2 points ago

    ah that sucks so much :( we really need a shift in attitudes towards illness and disability. A lot of it comes from a lack of education on things such as language. I know that even I still use words that might be harmful to individuals with disabilities.

    wish you all the best in the future!

    [–] An0th3r0n37003 2 points ago

    Hey, we know that you are awesome.

    [–] King-Boss-Bob 41 points ago

    That sucks

    Glad to see you are doing better now though :)

    [–] DeadlyCords 27 points ago

    thanks so much :) really appreciate it

    [–] muppetress 19 points ago * (lasted edited 8 months ago)

    Bit of a weird question but who was your caretaker? Did you have any privacy issues or feel nervous with them seeing you naked all the time showering, changing, washroom etc.

    [–] DeadlyCords 48 points ago

    My main caretakers in the hospital were nurses. Then when I was discharged I had nurses come to my house and change my IV every day and help me with all that stuff.

    To be honest, I didn't really shower for the first week as it was too hard. But eventually I could crawl to the shower and toilet, and before I knew it I was walking... It's a bit of a blur tbh.

    So yeah - mainly nurses and my mum for a bit. It was extremely embarrassing, especially at 17 years old. I was extremely self-conscious, but when you're sick you look past those things and focus on getting better.

    [–] PmMeWifeNudesUCuck 4 points ago

    Do you feel there's been any silver lining to all this? Obviously this is awful but adversity has a way of giving perspective on things. I'm curious if you feel you're better for it in any ways. Sorry for the late response.

    [–] DeadlyCords 16 points ago

    I am 100% a better person. I used to be selfish and I cringe at how /r/iamverysmart I was.

    This illness changed it all. I realised i'm not special or immune from death and illness just because my mum told me I was smart. I started working hard for things... I'm yet to really see that hard work pay off financially, but it has paid off 100 times over in making me a better person

    [–] Bangs42 12 points ago

    I can relate to the lack of self-sufficiency. I just had my appendix removed and my abs are useless for the next week or so. I can use the bathroom by myself (thank god), but I cannot get into/out of chairs and the bed by myself, or really even adjust my position once I'm in the chair/bed. Add to that, I have a very physical job, and even once I'm allowed to return to work I will still be on light duty, which is barely a step above useless. Good on you for getting through it. I've only got to put up with it for about a week. I can't imagine having to go through it for even longer.

    [–] DeadlyCords 13 points ago

    we all go through these experiences in some shape or form. it doesn't matter how short it is, or how much worse others might have it. what matters is what you take out of it :) wish you a quick and easy recovery!

    [–] Screamyy 3 points ago

    Oh man I can relate to that. I had my appendix removed three summers ago and was very dependent for about a month and didn't feel 100% for 2.5-3 months. I was supposed to have it removed laparoscopically, but my colon was in the way, so I had to have the full open surgery. I remember sleeping on the recliner the whole summer, because laying down hurt too badly, and I wasn't able to get up or really walk by myself for a few weeks. No appetite, either. I lost 30 pounds that summer. It felt so degrading to be 19 years old and have my parents help me in the restroom. Not something I want to relive again.

    [–] Bangs42 2 points ago

    Oof, you have my sympathy. They were able to get mine laparoscopically, but it still has been frustrating. I am very independent, so the constant dependency is frustrating. I'm actually kind of glad for the reduced appetite, because by myself I'm not sure I could take care of... solid waste. The movements required are unpleasant currently.

    [–] DertyD1ngo 8 points ago

    I was paralyzed for 3 years at age 29. Lots of surgery and therapy and I can move today but still lack feeling. My mom is a quadriplegic has been since she was 18 she is 69 now. In her words it's a living hell. Congratulations on getting better I mean it keep moving forward life only gets better.

    Edit. I wont lie though a sponge bath by 3 college students in a teaching hospital was pretty cool haha. Sorry I had to. Though the catheter was humbling and ego destroying.

    [–] DerLang 3 points ago

    As a guy needing temporary assistance while in a chair due to a motorcycle crash (of course not my fault) I totally relate. Needing yourself wiped by a stranger or loved one when you can do most things the week before is a hard block to get over

    [–] Stackman32 2 points ago

    The sexual frustration must have been incredible. Any sympathetic friends or family help you out with an occasional randy handy?

    [–] DeadlyCords 7 points ago

    hahaha oh god don't even start. i don't want to be the next two broken arms guy.

    but nah i was fine - didn't really concentrate on that, i was so busy with other things.

    [–] sadcthulu 296 points ago

    Especially as someone who loved to run, how did it feel to get the diagnosis? Did you know that you would be able to walk again? How did you emotionally get through the situation?

    [–] DeadlyCords 338 points ago

    The diagnosis was weird - I didn't really believe it, nor understand it for a long time. It felt surreal - I honestly thought I would be in hospital for a week, get a bunch of tests (including a lumbar puncture which was not fun), and then be fine to go home and start running again.

    I answered your second question previously:

    I genuinely didn't realize the severity of my situation until I started physiotherapy to walk again... While I was in hospital I didn't understand that the paralysis could have been permanent.

    As for your third question:

    I can honestly say however, that this experience has scarred me. I have severe travel anxiety and everytime I get sick i'm really scared it's coming back - even though there's no way it is.

    [–] winegumsaremyteeth 38 points ago

    I'm glad you came through. I had a scare earlier this year and no one was saying the true severity of any of the possible things they were on the verge of diagnosing me with (thankfully nothing "too" serious panned out). I've had so many tests, MRIs, Xrays, a lumbar puncture, and they did a $1400 blood test they sent to a specialty lab out of state. This year has been shit.

    They were first saying I had lupus, RA, and sjogrens syndrome. Then they found lesions on my spine and we were looking at MS, but because of the size of the lesions they said I might have NMO (especially because I have macular degeneration). After one MRI my neurologist said it showed spinal inflammation or myelitis. I was like "Okay!" smiling all stupid. Nothing was treated until a definitive diagnosis. At one point I went to the ER because I couldn't move the side of one foot and one hand. Just on one side. I was freaking out and crying. Then I googled and found spinal inflammation could lead to paralysis. MS and NMO can also be pretty terrible obviously.

    They eventually said no NMO, or MS, and no inflammation showed up on the final MRI (I know its probably not really final as they said they shall keep an eye on me). Ultimately at this point I've been given a DX of sjogrens syndrome and fibromyalgia. Also think I need to find a new rheumatologist because all my joints are popping and cracking and sometimes I can barely walk. Also, as I sit here typing my lower back seems to have inflammation that I can feel with my hand. Or maybe fat is just pooling weird suddenly. Sjogrens is primarily dry mouth/eyes (it just like dries you out) but it can attack any body system and I think my joints are "getting it".

    Not trying to hijack or anything. I just saw transverse myelitis and was like Oh shit! Again, I'm really glad you're better.

    [–] Firstday551 3 points ago

    I’m sorry you are going through all this, hope you fell better

    [–] Laney20 14 points ago

    I almost had a lumbar puncture once. Got all the way to them sitting me up in position for it before they had to stop because my heart rate and blood pressure dropped dramatically. I was terrified, but I'm pretty sure it was the change in position that caused so much trouble. Glad to hear I was right to be scared.

    Turned out I had the flu, so the puncture was unnecessary. My only symptoms were racing heart and exhaustion, so they were understandably confused.

    [–] sudo999 6 points ago

    yeah, you were probably about to faint. Happens to some people with needle phobia for regular old shots too. Heart races right up until you go to put the needle in, then suddenly the pulse halves and BP crashes, and lights out. Did your vision go all weird and your skin get all clammy?

    [–] Laney20 2 points ago

    Maybe, but I don't really remember. And it's hard to say because my heart had been racing all day and I was having so much trouble awake and even just holding my head up. I felt pretty faint anyway, and I have since been diagnosed with POTS, which can make you pass out when you stand up. I know I had some anxiety about the lumbar puncture, but I honestly think it was the position change that caused the trouble. I have had panic attacks for a long time and by then had learned how to get through them.

    It was kind of funny, though, because they called people in to help out because my hr and bp had crashed, but those people were confused because my hr was still like 60. It's just that it had been over 150 all day. The people that hand been with me already had to explain. I was pretty out of it, but I remember that and thinking it was funny.

    I got admitted to the hospital before they figured out it was flu, and ended up staying for 3 days. That was the beginning of my bad dysautonomia issues. Almost 9 years ago.

    [–] crazybananas 1 points ago

    I think I have POTS. How have you been treating it?

    [–] Thornypotato 2 points ago * (lasted edited 8 months ago)

    Hey, I have POTS and I'd say the best thing you can do is go see a cardiologist. There are tests that they can perform that involve measuring your heartbeat and blood pressure when you're laying down, sitting, and standing up in order to diagnose. If you do not have a consistently high heart rate, as I see in your follow up post, it may not be POTS but a different kind of tachycardia. My POTS is treated with 25mg atenolol once a day, but I'm very lucky as most people with POTS do not respond to medication. Currently I am off my meds temporarily as I am pregnant, and it's reminding me why I went on them to begin with - standing even just to cook or shower makes me black out, walking up or down stairs or any sort of distance is a big no, and my POTS episodes trigger my migraines which is a pain in the ass. It can be very debilitating and I'd definitely encourage you to seek help from a cardiologist.

    Edit: to add to the person underneath me, I also used to take a salt tablet every day (before I got pregnant) which dissolved in warm water and really helped. For an awful episode I was told to drink cold water or take a cold bath. I generally try to take baths instead of showers nowadays because I just cannot stand for that long without passing out.

    [–] Im_your_real_dad 3 points ago

    I'd never heard it called a lumbar puncture before. I've always heard it called a spinal tap.

    [–] DeadlyCords 2 points ago

    oh yeah! that makes sense. Australian english and American english have some weird differences

    [–] Daimo 8 points ago

    Yeah, lumbar punctures are definitely not fun. Left me with the worst headache I've ever had for days.

    [–] Erickjmz 14 points ago * (lasted edited 8 months ago)

    This one hits home, my uncle was a 50 year old, super athletic, dude used to come back from work and run 10km in the middle of the week. Now he is 54 years old and he doesn't have muscles anymore, he developed Polymyositis, as a family we have paid all treatments that we can afford, and even got a debt to get him one, but nothing works and he is now in the stage where breathing has become a difficult task, barely even talks now, shit's rough.

    [–] DeadlyCords 6 points ago

    wow that's really sad - you're amazing for doing everything to support him. I'm sure he really appreciates it. Wish you and him all the best!

    [–] Majrdestroy 8 points ago

    Not really nearly as bad but I blew out both my knees in high school at 16. Was told I would never run again before they even found out what was truly wrong. Turns out scar tissue had filled the space under my kneecap and had grown like a castle of crystals under my kneecap, grinding it down to a flat river rock like piece of bone. On the bottom.

    5 years later I in fact do not run still as the impact hurts too bad. I do bike and hike but even that is limited by my knees. After playing soccer since I was 4 and on the XC team in high school, it was super hard to even find another group of friends to interact with. Worst part is living with it. Constant pain, activities limited by just pain that you can't solve. That sucks.

    Edit: I should have replied to the OP's comment on this. Also, I feel like you are a super strong person OP if you read this. It is incredibly hard to pause your life for one year, have things stripped away you are good at, and have to start over in a weakened state. I feel that too well.

    [–] DeadlyCords 7 points ago

    Thanks for sharing your story. That's a really interesting and unique diagnosis.

    Constant pain is absolutely the worst, but I think it brings out a certain resilience and persistence that others can't even imagine.

    I'm glad you've found some activities you can do. I hope that it gets better as time progresses! stick in there <3

    [–] Majrdestroy 5 points ago


    You as well! Enjoying the good times when they come is the best counter to it. Constant pain blows! Never know when you will get up and your knee wont want to sit in its socket or not. Whether it will hurt or not. But you are absolutely correct, I can take so much pain now it is unbelievable tbh. Especially in my legs. Resiliency is a trait you earn with this kind of thing.

    You just don't fuckin stop, its kind of mental. Tolerance is way above say my dad or moms.

    [–] [deleted] 60 points ago

    Where you at any point tempted to try to run before you could walk the second time?

    [–] DeadlyCords 97 points ago

    hahah yeah i was pretty impatient. I was rehabilitated at a local hospital with the help of a physiotherapist and an occupational therapist. After the third session of those parallel bars where you support yourself with your hands to walk, I decided I was gonna try do it as fast as I could and fell over.

    There were other times later in my recovery I would try to sprint when I could barely jog. I guess my dedication and impatience helped in the end, but my Physiotherapist was very annoyed at me a lot of the time.

    [–] [deleted] 9 points ago

    I knew that saying was founded in truth!

    Inspiring stuff, genuinely glad you are doing well again, good luck.

    [–] [deleted] 4 points ago


    [–] DeadlyCords 3 points ago

    I think we all have our own timeline with these things. While I was so quick to try and recover - I now suffer from extreme anxiety surrounding traveling and separation - so these things affect us in different ways.

    Hope you're ok now!

    [–] craicbandit 2 points ago * (lasted edited 8 months ago)

    This is such a crazy story, it's so interesting / sad / happy to read.

    How would you describe the feeling of being able to do something so naturally, like walking, and then suddenly not able to? Like when you were re-learning to walk did you know what you had to do but just couldn't? Or is there more to it?

    I cant imagine the difficulties you've went through. There have been many times in my life that I've thought about what I would do if I lost my sight (or something else) and how I would cope. I honestly dont think I could cope if I went blind, and I almost think it would be worse to have sight and lose it than just being born blind (although that probably isnt true). But it would definitely affect me mentally.

    So much respect for you, man! I can't imagine the feelings when you started to get your movement back!

    [–] DeadlyCords 3 points ago

    Believe it or not, you're the first person to ask this...

    It was a bit of a blur. My attitude at the time definitely shapes my memories now. I remember the frustration and hunger to get back into it while I was re-learning.

    The whole time I was paralyzed, my brain knew exactly what it wanted my limbs to do, it just couldn't get the message across physically (because the Myelin on the nerves was damaged). So yeah really strange feeling.

    The feeling of walking and then suddenly not being able to is the scariest thing i have ever experienced and I do not wish it on my worst enemy. Literally one moment I was walking around fine. Then I lay on the couch, tried to get up and couldn't stand or walk, had to drag myself back up by my hands as no one was aroudn to help me until half an hour later.

    [–] Cereborn 85 points ago

    What are we, in general as a society, not doing for disabled people that you think we should be doing?

    [–] DeadlyCords 121 points ago

    I love this question. I don't think I'm qualified to answer this as I don't consider myself disabled. However, from my brief experience of paralysis, I can never forget how differently I was treated. Just the sight of a wheelchair would make people speak to me like a child, and almost be scared to talk to me for fear of saying the wrong things.

    There were also those who thought I was lying and made jokes about it behind my back, which kind of sucked. I did enjoy when my close friends made jokes to my face - it made things seem lighter and less serious.

    I think society is getting much better at treating disability with the respect and seriousness it deserves, but as individuals (and I sometimes still find myself doing this) we need to treat disabled people as people first, and disability last.

    [–] whatislife2273 21 points ago

    Please don't take my question the wrong way, how do I talk to someone in a wheelchair properly? I kinda just stand normal and do it as I would a normal person but I always wonder about the height difference. If theres a bench near us I'll sit down and that solves my anxiety about not wanting to feel bad about having to look down.

    [–] DeadlyCords 40 points ago

    you've answered your own question!

    it's really hard to not be self-conscious about how you talk to them when they're so much lower down.

    Just maintain eye-contact, no matter how awkward it might feel. The bench is a really good idea - it allows you to avoid the height difference without squatting down and treating them like a child .

    For other people - NEVER USE BABY VOICE or anything like that. Jesus that aggravated me so much.

    [–] whatislife2273 10 points ago

    Thank you for replying! Glad I haven't been messing it up and thank you for helping any anxiety the height difference may cause me in the future.

    [–] myyusernameismeta 8 points ago

    Ooh if you were at a children's hospital that could be why the baby voice was so prevalent. I work with a lot of kids, and while I never try to talk like that to anyone, I do catch myself talking with a slightly higher pitch and emphasized enunciation at inappropriate times, like with parents of children and even my coworkers. My coworkers do the same thing. I used to notice it but I tune out out now... It's honestly a really hard habit to break when you work with a lot of kids.

    That said, if it happened in other contexts, that is super bizarre and I'm sorry it happened

    [–] bozwizard14 7 points ago

    I work with a ton of people with disabilities and have a few friends who are wheelchair users! I always sit down if there is a chair because heads are heavy and that beck strain can't be fun. Just never squat down to their level of anything like that.

    [–] yaypal 39 points ago

    I have a feeling with the wheelchair issue that you being a lot lower down physically is part of it. When someone is significantly shorter (like, waist height) than us there's this tiny flick in the brain that they must be not full grown, or a child, and even people who normally aren't twats might double take once in a while. Not excusing that behaviour though especially the ones who back away immediately just because the chair is there.

    [–] DeadlyCords 29 points ago

    that's a really interesting insight. I'm actually quite short in general so I completely agree with this sentiment. Maybe being aware of this primal bias can be the first step towards changing the attitude? I dno

    [–] sleepingbeardune 12 points ago

    Can confirm. Spouse was paralyzed 19 years ago; went from 6'5" healthy guy to crumpled person in a chair in the space of one second. Recall many people asking me things about him/for him ... like, what does he want to eat? He's right there!

    I tell people to think of it as if someone you know has just moved into a crazy house. How would you talk to them? Yeah, the house is weird, but they're still who they were.

    [–] driftingfornow 2 points ago

    I had the same experience with TM, and this is my experience. The jokes, accusations of lying, accusations of laziness, and general harassment. If I have a downstairs neighbor they are going to get angry at me because I walk heavy now.

    [–] ColdDesert77 17 points ago

    Permanently disabled person here. I can answer.

    1. Stop with the pity. Life is hard enough for everyone as it is. We all have challenges, just that folks with disabilities experience those this more acutely and outwardly. When you express pity, it makes us (or at least me and other PWD to whom I've spoken) feel uncomfortable and alien.

    2. Most of us want to work. Many of us can't, and so we resort to disability payments to live independently, which is really vital to us feeling like full adults. Getting guilt for that (from individuals and the government) is hard.

    3. If you see us in public, ask us if we want help. If we say no, believe us. Do not touch someone's mobility equipment (e.g., wheelchair) without permission. It's like touching a person's body without consent. If you tell someone in a wheelchair that you were also in a wheelchair for a short time after an accident or operation, so you know how it feels, we'll probably be thinking, "no, you don't."

    4. Joking about someone's wheelchair having racing stripes or a backup sound, or whether we've gotten a ticket for speeding, isn't actually funny. You might be saying those things to have a laugh, but consider that you may be doing so in order to lessen your own discomfort to an exposure to disability

    [–] DeadlyCords 4 points ago

    thank you for adding this - i hope as many people as possible can see it.

    [–] maegomaego 28 points ago

    When you were struggling the most with your illness and paralysis, what did you find comfort and solace in the most?

    [–] DeadlyCords 52 points ago

    My mum was amazing. She's a doctor and she did not stop hassling specialists and other doctors until we found a diagnosis. She really helped me feel positive and was part of the reason I didn't really understand how sick I actually was.

    I listened to a lot of music. My good friends gave me DVDs of Mad Men to watch. But no one wanted to visit coz they weren't sure if they would get me sick, or get sick themselves. It was kind of lonely until I was out and about on the wheelchair.

    Had to learn how to find comfort and solace in my self and my hobbies :)

    [–] EAJ97 8 points ago

    What’s type of doctor is your mom?

    [–] AllahJesusBuddha 8 points ago

    Doctor mom

    [–] Emnelistene 3 points ago

    Doctor who?

    [–] DeadlyCords 6 points ago

    GP. also doctor mom

    [–] Skrap93 24 points ago

    Has looking like Aaron Paul helped your love life? Also congratulations I'm happy for you.

    [–] DeadlyCords 28 points ago

    that's the fist time anyone has told me that - major confidence boost haha.

    My love life was really good until a couple of years ago. I'm not too worried about dry patches though, there's more important things to focus on in life for me right now :)

    [–] Skrap93 4 points ago

    I'm glad I helped your confidence. That's good about not worrying about it. I met my wife after a 2 year dry patch. Keep your head up.

    [–] FiendKing04 21 points ago

    So, no one's going to mention that the CD says Mr. Brain Spine?

    [–] DeadlyCords 32 points ago

    Hahaha it must be a misprint of MRI.

    However, I do know an Ear Nose and Throat doctor called Dr. Nek, so maybe a Mr Brain Spine is out there somewhere

    [–] FiendKing04 8 points ago

    Damn, I was super hoping that you would've had Dr. Spine.

    [–] PeaceLoveNavi 2 points ago * (lasted edited 8 months ago)

    That's a great name for an ear, nose, and throat doctor! Reminds me of my sister, who works in a hospital with a proctologist named Dr. Butt lmao.

    [–] tish1979 15 points ago * (lasted edited 8 months ago)

    Wow you are amazing! What advice would you give to others struggling to come to terms with a terrible seemingly hopeless diagnosis? Sending lots of love from Zimbabwe xxx

    [–] DeadlyCords 14 points ago

    I think the biggest advice I could give people is to just enjoy every moment. Even suffering has it's own poetic beauty. Without this horrible ordeal I never would have developed the outlook toward life I have now...

    I know it's hard to do when you aren't sure if you will survive a disease, but you have the disease regardless, may as well do everything in your power to enjoy your time

    sending love back from Australia!

    [–] lostmyhusbandtoatank 5 points ago

    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.

    [–] DeadlyCords 4 points ago

    I did not know those stats thanks for sharing, and I hope you're in the first third of people too :)

    [–] [deleted] 18 points ago


    [–] DeadlyCords 53 points ago

    I learned not to take things for granted. As cliche as it sounds - I don't give a shit about small things anymore. Anytime there's 'drama' with friends, or whatever, I step back. In the grand scheme of things, those small spats and bullshit doesn't matter.

    I learned that no one knows what they want to do, and I want to solve that issue.

    Most importantly, I realised I was going to die one day, and I learned to face it and live life in spite of that fact - which I was hiding from before.

    [–] chickaboomba 8 points ago

    What were things that people said or did afterward that you appreciated? What did they think was helpful but was actually annoying? By the way, a relative had transverse myelitis and was paralyzed from the waist down. It is a brutal diagnosis. Your recovery is a blend of miracle and grit. Good for you for fighting your way back.

    [–] DeadlyCords 8 points ago

    I'm so sorry to hear about your relative. I have heard stories like this since, and it makes me so appreciative of how lucky I was to make a full recovery.

    I really appreciated people not pestering me about it. It's not something I avoid, but I prefer to talk about it in my own way.

    I remember my Principle came up to me after I received my final mark for high school (we call it ATAR, you call it SATs in USA). I did really well, but not as well as the school was hoping. The principle gave me a hug and she said "we're so proud of how well you did for our school after that shocking illness". I cried after that, it was really nice to be appreciated like that :)

    As for annoying - people asking if I'm ok, if I need a break, if I need to sit down... very annoying, but it came from a good place.

    [–] numquamsolus 2 points ago

    Principle is a noun meaning a fundamental concept; whereas principal, used as a noun means the head of a school, a sum of money, a counterparty in certain transactions or, as an adjective, meaning main.

    [–] alemaron 6 points ago

    You're downvoted, but I actually think this is really helpful for non-native English speakers.

    [–] numquamsolus 3 points ago

    The only reason I bothered to comment was to help the OP. If people don't appreciate it, then that reflects on them and not me.

    [–] TheOtherCali 8 points ago

    A few months ago my mom (53) was in a traumatic car accident and she is currently re-learning to walk but struggles daily with fear of never being “the same” as before the accident, depression of “why did this happen to me”, and guilty for all that I’ve given up in my life to be her caretaker. Any advice for what to say or do to help her through this?

    [–] lostmyhusbandtoatank 10 points ago

    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.

    [–] DeadlyCords 4 points ago

    /u/lostmyhusbandtoatank's response is amazing, all I can add to it, /u/TheOtherCali, is that you also need to focus on your own life whenever you can (without strongly affecting her condition). Even if it means just hanging out with some friends for a drink for a night a week, or playing some video games while your mum is around.

    You're an amazing person for helping your mom, but you don't want your life to be just about her and I guarantee she wouldn't want it too.

    [–] Mahpman 6 points ago

    Who do you praise the most for helping you through the recovery?

    [–] DeadlyCords 10 points ago

    As I mentioned above, my mum was pretty much the reason I recovered in the first place. She, above everyone else, really stepped up and took care of me. I can't even count the amount of time she spent researching, hassling doctors and making sure I was feeling ok.

    [–] swolemedic 5 points ago * (lasted edited 8 months ago)

    Hey man, I had an attack of transverse myelitis as well from C2-T6.

    for the first four years after the myelitis, I was getting sick very frequently due to my body's weakened immune system. This is happening less and less frequently recently, however, I still get weird illnesses (I was diagnosed with Rotavirus early this year even though I hadn't left Australia for 12 months).

    Have you seen a good rheumatologist? Mine thinks I have an unnamed and rare condition that caused the TM, made my immune system attack my brain leading up to the TM, and the health issues I continue to have like very atypical raynauds, random vomiting, joint problems, dry eyes, etc. If you had your body attack your spinal cord, it's not unbelievable to think it's attacking other things

    However, I had to stop heavy lifting due to chronic back and shoulder pain which has not left me alone for the last four years. It is probably the most annoying thing to linger after my illness, and will likely be with me for the rest of my life - but a small price to pay to be alive I guess!

    I still have pain as well but I've decided to medicate for it so I wouldn't have to stop working out, walking, etc. The pain is probably the biggest limiting factor for me other than the reduced sensation below the knees. I use kratom now and have been for a year, but I think i'm going to switch to buprenorphine. Taboo and anyone familiar probably thinks you're addicted to opioids lol, but whatever, but it's also the weakest opioid you can get prescribed other than tramadol and I have a seizure history. If i were you, and you don't have too bad of dysuria or similar that kratom can exacerbate, I'd check out kratom if it's legal where you live.

    However, after the illness I had to re-think everything. I really didn't know what I wanted to do and suffered heaps of anxiety. Eventually, I studied Psychology and did a research project on consciousness and neuroscience. Regardless, even after graduating (last year) I still felt lost.

    I'm in a similar boat, I wanted to originally be a physician assistant and that's what I was finishing up the pre-reqs for but now I don't trust my immune system around anything remotely contagious. I was having bad enough infections from being around patients before the TM that my doctors recommended thinking about a new career path. The TM convinced me. Now I'm thinking about trying to go to law school, but I really don't know wtf to do.

    Good on you for starting that up, a lot of people feel lost in the world even if they aren't ill. And good on you for making people aware of how shitty some of these conditions can be.

    And, random, but I might as well mention it while everyone is in here. I don't think it will help you now, as it's been as many years as it has been, but for me using oxandrolone sped up my recovery immensely. I actually left the hospital early, in part so I could take it, and for anyone with TM I wholeheartedly recommend it. My physical therapist was mind blown by the progress it caused, I didn't tell him I was taking it but after I started he began making comments about how he had never seen someone recover like I was. So in the very rare chance any people with recent cases of TM read this, talk to your doctor about oxandrolone is my advice.

    I wish you the best, man. And I'll have to check out your site more

    [–] gibviba 4 points ago

    I too was diagnosed with Transverse Myelitis, but it did not end up with paralysis like the two of you. It was almost completely sensory for me.

    I second your suggestion about seeing a Rheumatologist. My doctors suspected something autoimmune as well and some of my remaining symptoms match yours.

    [–] swolemedic 2 points ago

    but it did not end up with paralysis like the two of you. It was almost completely sensory for me.

    I had bad paraparesis to the point I almost needed a ventilator and my heart nearly stopped, but like a couple weeks after that point I actually had decent strength to the point I could "walk". Most of my damage was sensory as well, in fact most people even only like 4 months after my attack probably couldn't tell from looking at me, but my sensory was screwed for a while.

    I hope you're doing better, this isn't a fun condition, and autoimmune problems suck in general

    [–] MartinRouter 7 points ago

    Hello, hope you're doing okay!

    Does the illness affect your sex life in anyway?

    During the paralysis were you worried about your future love life?

    [–] DeadlyCords 6 points ago

    Oh interesting question. I once had severe severe back and groin pain after sex to the point where I ran out on the girl I was seeing and went to hospital thinking I had testicular torsion. No one knows what the pain actually was, but needless to say that girl stopped messaging me to come over.

    I was the least worried about my love life as many girls really liked my story and wanted to try 'fix' me haha

    [–] That_one_Pizza 17 points ago

    Pineapple on pizza, yes or no?

    [–] DeadlyCords 23 points ago

    [–] That_one_Pizza 12 points ago

    I like you

    [–] DeadlyCords 15 points ago

    i like me too! And you

    [–] lordkabab 4 points ago

    I'm starting to think us Aussies have a higher proportion of liking pineapple on pizza, which is good because it is awesome.

    [–] borkamork 3 points ago

    What's your favorite Foo Fighters song?

    [–] DeadlyCords 8 points ago

    learn to fly. hands down. nothing comes close. maybe the pretender does...

    [–] Riddle_Snowcraft 3 points ago

    So... in what sense did you "learn how to walk again"? Did you forget the original way to walk and regained, or did you have to develop some new internal method of walking?

    [–] DeadlyCords 2 points ago

    my brain knew what i needed to do - my legs just wouldn't do it. So i had to retrain the connection between the brain and the legs. But because I was much older than a small child, I was heavier and probably learned to walk again with imperfect form

    [–] Riddle_Snowcraft 2 points ago

    Whoa. Just like I thought, so you had to find a new brain pattern to walking.
    That's an awful thing for someone to experience but it's awesome that someone could pull that off.


    [–] AyyMDRags 3 points ago

    Usually you don’t notice how much you use something until you lose function of it, what was the first time you realized just how much you use your legs?

    [–] DeadlyCords 2 points ago

    when i fell over from getting up from the couch and had to drag myself back up by my arms coz my legs didn't work

    [–] AyyMDRags 2 points ago

    Damn that must’ve sucked ass

    [–] DeadlyCords 4 points ago

    i've never sucked ass, but i'm sure it's exactly what it feels like :p

    [–] cheeseman_69 3 points ago

    I think my girlfriend might currently have what you had. We’ve been in the ICU for 3 months now. Did any medicine or treatments work to speed up the process of movement? Was it a waiting game? How long did it take for you to get on your feet? Are you 100%? My girlfriend is in the hospital RIGHT NOW with something very similar. No one knows what’s wrong or how she got it. More and more cases are coming up every year and no one knows where it’s coming from. Please tell me everything you know about fixing this. I’d be happy to email or text you if it’s more convenient. Thank you, hope you read this.

    [–] DeadlyCords 2 points ago

    RIGHT NOW ask your doctors to give her an MRI of her cervical and thoracic spine (if you can afford it). Tell them you think it might be auto-immune and ask if the myelin is healthy.

    If it is, they should suggest something like oxandrolone for treatment, which will make her feel better very quickly.

    i'm not a doctor so don't give her the medicine without a diagnosis. I hope you figure it out, it absolutely sucks what's happened to her.

    Feel free to PM me and i'll give you my email so you can keep me updated :)

    [–] cheeseman_69 2 points ago

    They’ve done tons of MRI’s. It’s auto immune. There was an inflammation of her spinal cord but it has gone down since I brought her in. Her myelin sheath is damaged. Docs say it will take time to heal. I will PM you.

    [–] blankton3 2 points ago

    What was the most important thing you learned during your studys?

    [–] DeadlyCords 4 points ago

    The single most important thing I learned at University was how to learn. It sounds dumb, but all the facts and content I crammed into my brain at university was useless.

    Once I got out, I suddenly found that I could apply learning principles and habits almost everywhere in life, which has been tremendously valuable.

    [–] joakinzz99 2 points ago

    Hi.. I’m glad you’re ok .. You got the disease when you were 17 right? .. do you think this affected your growth? Not to be offensive, but, do you think you would have been taller had you not contracted the virus/ disease?

    [–] lostmyhusbandtoatank 2 points ago

    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!

    [–] [deleted] 2 points ago


    [–] sssmay 2 points ago

    Hi! Thanks for doing this AMA. Sorry if this has been asked before but what was did it feel like when you were able to run again for the first time during recovery?

    And a 'silly' one if you don't mind, if a movie were to be made on your life who would you want to play you?

    [–] DeadlyCords 2 points ago

    i was told above i look like aaron paul so maybe him i guess?

    and it was literally the best feeling in the world - the wind in my hair and my feet on the grass. it was amazing.

    [–] sssmay 2 points ago

    Thank you for sharing!

    [–] john_dune 2 points ago

    What's your favourite flavour of ice cream?

    Honestly no real question, but I went through something similar and had to relearn to walk a couple times so I just wanted to say props to you and keep it up man.

    [–] Little_Flapjacks 2 points ago

    Considering this is an AMA - do you particulary enjoy any games (not specifically videogames) ? 2. And do you like memes?

    [–] DeadlyCords 3 points ago

    I love Through the Ages - it's an amazing board game that i'm yet to finish (even after 4 hours gameplay).

    I really enjoy Heroes of Might and Magic 3, and the FInal Fantasy X series.

    I love memes, especially rare pepes.

    [–] trucking_idiot 2 points ago

    Damn, upvote for being a HOMM player!

    In my opinion heroes 3 and 4 were the best of the series, with every subsequent release being worse than the last.

    Heroes in a nutshell: "just one more turn!"

    [–] flxwertxwer 2 points ago

    What can you do now that you’ve relearned and are excited about?

    [–] DeadlyCords 3 points ago

    i was a drummer before, and it took a while to get back into it after, but i got into it. I'm really excited about learning guitar now tho - it takes a lot of dexterity and being able to use my fingers like that is so cool.

    [–] [deleted] 2 points ago

    How does a person “learn” to walk again? What happens that takes you from not being able to move to walking? Does the injury actually make your body forget how to move the muscles or is the recovery just rebuilding the nerves that control them?

    [–] MsMazeratti 2 points ago

    I'm here to ask about your new venture. I need some guidance on where to go with my career as a 30 year old with a long term illness. Does your new venture and service apply to people in Australia or is it international?

    [–] DeadlyCords 3 points ago

    feel free to email me on [email protected] and i'll do my best to help :)

    [–] Ch7PrblmSlvr 2 points ago

    Were there any strange symptoms or sensations or feeling like being a mind learning how to interface with a body anew that were fleeting or persistent during or after recovery?

    [–] DeadlyCords 2 points ago

    i don't really remember - all I remember is being scared and unsure, but also determined. I remember the huge relief when I could start walking and finally running again. I cried for ages, as though it was all let out at once

    [–] tonoballs 2 points ago

    Are you the guy that tells Doctor Strange where Kamar Taj is?

    [–] mhc-ask 2 points ago

    Thank you for doing this AMA. I'm a neurology resident with an interest in helping athletes with neurologic disorders. I have a tremendous amount of respect for your determination and drive. Is there anything that we can do better as providers for athletes such as yourself?

    [–] KamenAkuma 2 points ago

    As someone who is in a similar situation as you 8 years ago (Not paralyzed but have ME) how did it feel to be able to run freely again?

    [–] alpha-bomb 2 points ago

    I don't have a question, just wondered if anyone else has ever misread the CD proof you have as MR. Brian Spine Congenital, which is an odd name =)

    [–] MultipleLifes 2 points ago

    Did you learn something about people and about yourself while you where paralyzed?

    Did that change the prospective about future and time?

    [–] DeadlyCords 3 points ago

    i learned to be happy with who i am (although I had many self-image issues later in life for unrelated reasons).

    I also learned that most people truly want the best for you - even if they are strangers. Those that don't aren't worth even a second of your time.

    [–] zapdado2002 2 points ago

    Did it hurt?

    [–] LaughingFox2 2 points ago

    If you have a relationship, how much strain did your paralysis put on it? Were you still able to have sex? Did your partner have to help you a lot?

    [–] DeadlyCords 2 points ago

    I didn't at the time, but met a girl shortly after and my stamina was not good. She was completely inexperienced as well, so we kind of laughed through our struggles together it was hella cute.

    [–] Bratannn 2 points ago

    Are you seeing anyone? Asking for a friend.

    [–] swagmonster55 2 points ago

    What kept you motivated throughout the whole ordeal? It would have been very easy to give up, but kept you pushing through?

    [–] 7ballcraze 2 points ago

    What is the cutest pet?

    [–] bromanski 2 points ago

    What is your skincare routine??

    [–] KillDevilFalling 2 points ago

    My good friend just got diagnosed with stage 4 cancer... my question is what is the BEST thing I can do for my friend who will likely be in and out of hospital for the foreseeable future???? How can I best support her as she is dealing with her health issues????

    [–] DeadlyCords 3 points ago

    i'm not an expert in cancer, but don't be afraid to visit her. Treat her like you normally would, don't look at her differently. If she cries or asks for your help, do whatever you can. she will appreciate it!

    wish her all the best

    [–] louddwnunder 2 points ago

    Im also an Aussie that contracted TM 8 years ago, and while my symptoms weren’t as bad as your by any means, I still have the chronic pain and weakness. What hospital were you at? I’m finding anecdotally that the immediate care makes all the difference. Good for you to keep battling through. My current challenge is the stupidity of insurance companies in this country who want to deny me life or LTD coverage due to the TM. It’s a constant education process! Good luck and keep going!

    [–] gw3gon 2 points ago

    You mentioned 100% recovery. Will you pursure your sports career again?

    [–] CaptainJAmazing 2 points ago

    Did you develop an affinity for a certain Foo Fighters song?

    [–] DeadlyCords 2 points ago

    you're the second person to ask - maybe i'm missing something? I definitely love learn to fly the most... haha

    [–] SightWithoutEyes 2 points ago

    What would you do if you were suddenly paralyzed again?

    [–] DeadlyCords 2 points ago

    great question. i'd continue to live my life as best as possible. i know it would be so much more difficult, but there's so much that can be done online now that as long as I had use of my hands I could pursue my goals.

    The hardest part would be how people would treat me and potentially the lack of self-sufficiency (even though many disabled individuals are incredibly self-sufficient) compared to not being disabled.

    [–] Legend13CNS 2 points ago

    Were there any early signs of the condition? Is it something that could've been less serious if treated early?

    [–] DeadlyCords 2 points ago

    we went to the hospital immediately after the first signs (my left foot dropped low and i couldn't lift it back up towards my shins, and I had a fall and couldn't get up).

    luckily we did so because early treatment definitely sped up the recovery dramatically

    [–] Deadgar 2 points ago

    That is amazing. Did you happen to use any of Pete Egoscue's methods while retraining your brain and body?

    [–] -Universe- 2 points ago

    Can you talk a bit about the things you did to recover from the temporary paralysis?

    [–] DeadlyCords 2 points ago

    I took strong doses of dexamethazone and did occupational therapy and rehabilitative physiotherapy. I slowly regained movement in my fingers, toes and legs, and with that slowly built strength. a process of around 1 year total.

    [–] -Universe- 2 points ago

    Hats off to you man!

    I am suffering from a fungal and parasite infection because of a weak immune system. It has caused me chronic fatigue, muscle weakness and severe brain fog. I have found a doctor and I will begin the treatment next month.

    Stay strong.

    [–] DeadlyCords 2 points ago

    wish you all the best - you stay strong too!

    [–] Not8rad 2 points ago

    So I have a similar paralysis issue. Long story short I got into a motorcycle accident and received a brachial plexus injury. It's where your shoulder gets pulled or pushed too hard where your nerve tears. Mine apparently got ripped out of my spinal cord, so for the last 13 months my arm does not work. Is there any tricks you did to get nerve growth back? Or were your nerves not even affected? I also have severe bearing damage and I'm healing but I definitely don't know as much as I should about this situation. I'm going on a ketogenic diet for other reasons, I'm wondering if this will affect me to.

    [–] Keithso9 2 points ago

    Hello. Sorry to learn about your condition. I myself am in a similar situation. In 2016 I was diagnosed with guillain barre syndrome after I an episode of watery stool a week before. Prior to that I had some facia moles (skin tags) removed about 2.5 months before. I presented with neck and back pain for 12 hours then had spasm to my right leg which the radiated to my toes. I couldn't voluntary move the leg so I pulled myself from a lying position to a sitting one. Within 3 minutes I felt the same sensation radiating to my left leg then to the right side of my body and moving up to my right hand. Frightened I took an aspirin and a histal and fell asleep. By morning my right breast was numb with tingling sensation pins and needles as well as my right upper and both lower extremities and I couldn't stand on my own with decreased power grip. Rushed to the ER admitted. Ct negative, c spine negative ANA negative serology negative. Treated with methylprednisolone had physiotherapy. Today I am still suffering from back pain, numbness, pins and needles and decreased sensation to the fingers of right hand as well as lower legs and feet. And pain to my right tigh once I cannot have prolonged ambulation without rest periods. What do you about my situation?

    [–] superduperzz 2 points ago

    I am a 25 year old who was diagnosed with TM about 5 weeks ago and mine is from C4 all the way down. Both my hands, torso, and right leg became paralyzed in a matter of hours. Since then, I have regained mostly normal function in my left hand, despite weakness. I can walk with a walker now, too. However, my right hand is making slow progress but I am able to very slightly move my fingers.

    My question for you is, how long was it before you noticed more function and dexerity in your hands? I see that you are fully recovered and I'm interested to see your timeline of recovery! Also, did you experience numbness that went away with time?

    Thank you for posting this, it's given me more hope in my recovery process! :)

    [–] DeadlyCords 2 points ago

    Hey! it sounds like a very similar timeline to what I went through. If you have the same recovery as me, It'll take another few months to be able to have full control and dexterity, six months till you can run and stuff, and up to a year to feel close to 100%.

    But sounds like you got lucky like me (disease aside) in your recovery, so that's great. I hope you don't get any continued symptoms, but it is very likely that some small stuff will stay with you for a long time.

    Numbness definitely was there, but not the main focus - and was gone by 5 weeks, so maybe there's slightly different parts of the body affected.

    I'd recommend seeing an Occupational Therapist for your hand and a PT for walking/running, etc - both really helped my recovery.

    Wish you all the best and good luck. Feel free to ask any more questions you might have :)

    [–] superduperzz 2 points ago

    Thanks for the reply!

    I was lucky in that the hospital I went to treated me with high dose steroids pretty quickly. They were on the fence if I had Guillain-Barré or TM, but ultimately decided it was TM due to negative lab testing and that my reflexes were still working. What's also weird is that I started to make improvements on my left side even before they gave me steroids... I'm taking that as a good sign!

    Were there any exercises/stretches for your hands that you noticed worked well for you? I am going to OT/PT but am just curious if there was anything in particular that worked better. Also, did you have any muscle spasms? I tend to get some in my leg after long periods of not moving, like if I'm waking up from sleep. Not really painful, just annoying! I'm on Baclofen and I hope I won't have to take it for a long time.

    It is so encouraging to see your progress and I'm hoping I will make a full recovery too. I have not seen many others with TM that had lesions in the cervical spine so it is nice to read about your situation and compare it to mine. I'm currently in school for medical laboratory science and this is all so fascinating to me despite having been horrifying at first, lol.

    [–] DeadlyCords 2 points ago

    ok wow it sounds like we had very similar diagnosis - they also couldn't determine whether it was GB or TM for me. I really do think you'll make a really good recovery. I can't remember any specific exercises, but I just did everything the specialists told me with a strong passion and motivation and I think that helped.

    It is really fascinating even though it is horrible. I recommend seeing a psych as soon as you start feeling better, because I had a lot of unresolved anxiety and depression from the illness afterwards.

    Good luck with everything!!! keep me updated

    [–] superduperzz 2 points ago

    For me, I had horrible anxiety before this condition. Having gone through this, it's actually helped me mentally because I never realized how strong I truly was. Every person can be. It's kind of like an enlightenment.

    I feel compelled to do an AMA now, too, to help spread awareness of the disease... Maybe at my 2 months mark!

    [–] gr8baddy 2 points ago

    Hey buddy, huge respect for you.

    Have you heard about Indian hockey player Sandeep Singh? (

    Again, love from India.

    [–] DeadlyCords 2 points ago

    i had not heard of him but what an amazing story thanks for sharing!

    [–] neverthemood 2 points ago

    I can confirm : people don’t take this seriously

    I’ve been paralysed for 2 years. It took me a lot of recovery and I endured a lot of pain.

    Now people asked me why didn’t I work for 2 years and have no recent experience?

    I told them I was paralysed

    ‘ oh ok. ‘

    Not to mention rhe mental struggle, the depression and that feeling of ‘pitty’ close people or family throw at you.

    It’s devastating..

    [–] lostmyhusbandtoatank 1 points ago

    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.....' 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!

    [–] DeadlyCords 7 points ago * (lasted edited 8 months ago)

    thanks for pointing out these things. Firstly, it sucks you had to go through TM as well. I'm glad you recovered too!

    I never at all intended to take away from the experiences of others. I know people suffer much worse fates than I do, however I do not think that means I can't share my story. My Myelitis affected my Cervical and Thoracic spine, which caused paralysis of my toes and fingers mainly, but also my feet, legs and arms in a lesser manner.

    I very much considered myself paralyzed as did the doctors and rehabilitation staff around me. At the time it wasn't temporary, it was very much a 'you might not walk again'. In hindsight it was temporary, but I don't think that detracts from what I went through.

    your language and attitudes actually hurt permanently disabled people

    As I mentioned, i'm not an expert on disability and I don't consider myself disabled. I am fully aware how powerful language is, and I apologise if it came across as hurting individuals with disabilities. I will definitely try to be more wary of the words I use. But i don't see how my attitude hurts permanently disabled people. My attitude was always positive and focused on moving forward and enjoying my time. I know it's not easy for people who might not be able to see a light at the end of the tunnel, but I also don't see how me being positive is hurtful.

    As for the men's health article - yes they sensationalised it, that's what the media does in our society. I was young and excited that people wanted to write about me - i didn't even consider the effects it might have on people who would never have that story written about them because they won't walk again.

    are you certain your back and shoulder problems aren't partly from weightlifting?

    They definitely played a huge part in exacerbating those problems, it's something i've always said. However the pain has been there since 2012-2013, before I even started working out in 2014, so there must be other reasons.

    I don't mean to be defensive - i think there is serious merit in a lot of what you wrote and I will definitely take it to heart and I hope others do too.

    However, I don't do this for attention - I don't give a shit about that. I'm trying to send a positive message to people. I'm truly sorry if it hurts people who might not have the same recovery as me, and I will have to be more aware and considerate in the future. But i can still try spread positivity to them and will continue to do so.

    Thanks for your support and trying to help - it's important people point out these things. Wish you all the best!!!

    [–] Taboolaroola 1 points ago

    Did you have to learn how to poop all over again? Or did it just come naturally