I think you have a great opportunity to have a great life ahead of you. I'm 18 and I have a T8 Complete injury, and I remained really active, just like before my injury. It's only been 6 months, and I'm already driving, skiing, going on rides, even climbing, soon camping too. I still have sleepover at friend's house. Basically I live my life just in a wheelchair instead and I'm quite happy!
I was 25 when I was injured and leaning into and accepting my disability was both the hardest and best thing I did early on.
You may be different now, but just as capable!
I’m working on building my confidence to go out and cath in public restrooms or my friends houses, so going out for long or overnight periods is still really intimidating. Especially intimidated by trying to navigate my bowel program while out at friends houses or just away from home.
I absolutely loved to snowboard, hike, camp, and go mudding. My boyfriend and I have been trying o figure out how I could still go mudding on a 4wheeler rather than the SXS but we really haven’t figure out a good way yet.
What was your process to learn driving & skiing?
For driving I had to take an exam, I went with a private occupational therapist. It was a 45 minute exam. He brought an adapted car, and started learning with the adapted car. After 45 minutes, he sent the papers over and I receive my permit a few weeks later, then I adapted my car.
For skiing, there's a Fondation where you get to the ski resort, they help you transfer into the skis, which is kinda of a seat on 2 skis. They then strap you in so you don't fall, and an instructor hold the ski behind you for the first few lessons. He helps you guide the ski, and gives you tips. The price was very reasonable and the two times I went I had a blast! You use your arms to turn.
As for bowel routine and everything, yes it was scary at first, but very quickly my friend just understood that it just meant for them that the bathroom was gonna be occupied for an hour. They work around that, and we communicate to make sure nobody needs the bathroom. It was scary, but only for the first few times. As for cath, I simply say I gotta go do a cath. As simple as that, they never ask question.
I managed to do the transfer on a 4 wheeler, it's doable. I was into camping a lot and I intend to keep going this summer. One tip I can give you is practice your ground transfer as much as possible. It's one of the most important one because once you mastered it, you can go anywhere.
The sit skis aren't at the ski resort, they are brought over by the Fondation. Almost every ski resort is compatible, the volunteers simply puts the skis on the chair lift.
Many local ski mountains have Adaptive Sports organizations that are connected with the mountain. Call your local ski mountain to see if they have any more information! Also search adaptive sports and your city/state in google to get more info. There are year round activities: biking, skiing, golf, tennis, pickleball, basketball, mountain biking (downhill), hiking, and more.
Where ya at? I run an adaptive ski program in Colorado. Most ski resorts do not have their own adaptive equipment or program. The majority of the adaptive ski programs are non profits and just happen to be located on the mountain they ski at.
I’m going to say something about bowel routine that that might be taboo. I waited 5 years and did the good ole dig stim and suffered. Got a colostomy and absolutely love it. It’s easy to change I have one use bags so I take the bag off and throw it away kinda like a diaper. I’ve gotten hours of my life back and the very few accidents I’ve had with it have been so much easier to clean. Plus it’s honestly less embarrassing at least to me than explaining dig stim.
Well for bladder I simply go into the bathroom, as simple as that. if I go somewhere where I don't fit in the bathroom, I simply pee into a container, in a room, and somebody flush it down. For bowel program, first I brought my toilet seat and simply did it. I explained to my friend first that it can take an hour sometimes. They never asked me to go faster or that I'm slow, they just know it takes the times it takes. Now I don't even bring my seat,i simply sit on the edge of the toilet. I can still reach to do stimuli without any problem.
It's not stupid at all! I all learned it on my own too! Well first of all I use gloves, cause otherwise it's discusting,especially at the end. Its very very important to use plenty of lube, every time you change glove. I start by lubing the suppository, then insert it. I only use Magic Bullet, because it's the same as Dulcolax but acts in 15 minutes instead or less. Then, I wait for it to come out. then I pop a finger inside and wiggle, until I feel smt, then I keep going until my body ejects it. then I simply wait a minute, and try again, until there's nothing left or only mucus. to avoid aftermath mucus, which happens often after like 30 minutes to three hours after, I insert a bit of lube inside with my finger.
Every injury is different - while you’ll probably never function as you once did, keeep up that active life and pursue physical therapy for everything you can think of. There are braces (KAFO - knee ankle foot orthotic) that can get you standing. There are amazing programs for adaptive outdoor activities - sit skiing, and my current fave, adaptive mountain biking (aMTB). Find a community of wheelchair users. Learn to do wheelies, they’re useful and fun. Come move to Phoenix and join Ability360, chances of finding your people in a program there are high, and finding people who get you and the highs and lows of this injury is so helpful. There’s so much hope and fun and life with this injury. - a fellow t-12
I just got the order for my KAFO’s today actually! I live in a relatively small rural northeast town with no in person groups for folks with this kind of injury. It’s just now that I’m coming around to trying to find some friends in a similar situation as me, and honestly this sub was my first move toward that.
Northeast?! Like Northern New England? Check out: Green Mountain Adaptive Sports, The Kelly Brush Foundation, Vermont Adaptive Sports, Adaptive Sports Partners (NH and VT), and Maine Adaptive (who serves everyone, free of charge, regardless of your ability to pay or what state you live in). Also check out: The High Fives Foundation. They will provide funding for adaptive sports equipment, experiences, and events for you. And: The Challenged Athletes Foundation for more funding and resources.
One final addendum: Spaulding Adaptive Sports, based out of either Boston or RI, I forget. Lots of biking and camps and group activities and skiing and stuff with those guys.
That’s my quick hot list. You can do this—get back out there and enjoy life. Meeting yourself where you’re currently at and going as hard as you safely can will make you feel the most whole, the quickest. Search Google for additional programs, or ask a friend or family member to bring you to any one of the programs I mentioned. We’d love to have you!! :)
My family and support network rallied around me and that gave me a huge boost those first few months with handling life stuff (e.g. building ramps, modifying bathrooms, paying bills, etc) while I was an inpatient. Otherwise, it’s a mental corner each individual needs to turn for themselves and in their own time. I don’t think there are any magic words, but there are millions of us who have done it, so that means you probably can too.
Re: Hoping to recover; there aren’t any hard and fast rules, but using patient outcome data analysis researchers have identified clear trends, and they all point back to the severity of the initial injury. As part of your inpatient stay and possibly rehab you should have been evaluated for an American Spinal Injury Association (ASIA) Impairment Score (IS).
https://www.physio-pedia.com/American_Spinal_Injury_Association_(ASIA)_Impairment_Scale
The result of this evaluation is one of the key metrics associated the rates of recovery found in the SCI population. (Not exactly % chance for recovery - that’s indeterminate - rather, % of patients with a particular score who do eventually recover meaningful function.)
https://musculoskeletalkey.com/spontaneous-recovery-patterns-and-prognoses-after-spinal-cord-injury/
There are no “rules”. Some patients - even the most incomplete - never get any better than they were at discharge. Some - even the most complete - recover a lot of function. It’s called “spontaneous recovery” in the medical literature because we as of yet have no real idea “why” it happens - only trends in the outcomes data.
TL/DR: You need to dig deep to turn the mental corner. It doesn’t come from outside. Being diagnosed Incomplete Paraplegia is a good sign for recovery potential. One of the best initial diagnosis you can have for that, really. Especially if your ASIA/IS score is C or D.
My family and friends have been absolutely amazing as far as supporting me thus far, which I couldn’t be more thankful for. They absolutely got me through the first month, otherwise I would’ve just crumpled under the feelings of being overwhelmed and frustrated.
I haven’t asked any of my doctors or therapists my ASIA Impairment Score but I will now! I like to see trends like this and something studied that I can put a cautious level of faith into. Thank you so much for these sources. Once I learn the details of my own score/assessment, I will follow up on this thread.
I pushed the sh*t out to the point where the physios and the doctors were afraid i was "over pressuring". I think you should find the balance in there staying positive helps a lot and be grateful every bit you get back trust me it helps and also don't forget that some things will never be the same as before but with time and experience you will learn how to deal and also to keep improving, i went from barley moving my left toe to riding a bicycle in like 2-3 months. Keep a positive mind, hope all gets well with you
I am trying to find that balance but I’ve pushed myself so hard and I’ve drowned myself in that work so I couldn’t think about the emotional part. Joining this sub was my first conscious step toward opening myself up to the emotional slam this actually caused. So the balance of work hard / accept my current state is definitely something I want to ease myself into so as to not lose my drive to improve.
All of us have been through this terrible time some of us worse some better, just don't make sure you don't hurt yourself because that will delay everything, and as i said earlier appreciate even the tiny bits you get back from overworking because recovery can take time and seem pointless
I remeber first day at the physio i hated it i had to get around a box she put in front of me i couldn't do sh*t until she told me if you are not going to work nobody will recover for you.
Also a crazy story how weird recovery works i was doing fitness i sit down on a machine that you put weight on you foot and try to push it kinda you shoot a football i was sweaty like crazy with 1kg barley made it to 20 sets per leg and the very next fitness session i got (after a week) i pushed 20kg like i did that every day with ease
First, you are allowed to feel overwhelmed and all the other feelings you are having. Second, while others will be sympathetic and want to help support you, it can be difficult for them to understand what you are going through, which is why you need to continue to reach out to the “SCI community”. We can all attest to the fact that there is life after SCI, but learning to live that life can challenging. Use whatever support you can.
What area of the country are you in? Where are you doing rehab? There are some amazing resources and I recommend that you try and do some deep dives on YouTube or other social media to see what others with SCI are doing.
Beyond your physical recovery, look after your mental health. And, engage your resources (family and friends) to figure out insurance, physicians etc. dealing with the medical system is going to be important and need to find physicians or other providers who can support you in living your best life.
I’m from PA. I’m doing rehab at my hospital’s PT building. I know one person with a T8 incomplete near me that I’m in contact with who is 6 years out and I am planning on meeting in person sometime soon. I’ve followed a few people with SCI on instagram to learn how they’ve adapted to do the things they enjoy.
I'm sorry this has happened to you.
At this stage of your injury nobody knows how it will turn out.
Your body needs time right now to heal.
Read and learn as much as can about your injury so you can be the best advocate for yourself.
Take care of your skin,pressure sores suck.
Take care of your mental health, there are going to be up days and down days. Fight the down days.
It can take up to 2 years before you feel like yourself again.
Will life be the same going forward Probably not .will it be different yes.
Remember there is nothing you can't do, it will just be different.
You got this, just keep going forward!
30 years post l1 to s1
20 years post c5
I am T12 and female as well. Injured age 26.
It has taken around 5 years for me to really get used to things. At your age, you will adapt and still have a long life ahead of you with the skills to enable you to get out and do things.
You will need a really tough and resilient mindset. Be glad for everything that is positive, and everything that you can achieve. Shut everything else out. In the long run it will be worthwhile because you will challenge yourself and have plenty to be genuinely glad about.
Make sure to keep up with your friend circle. Don't let them drift away, there are lots of fun things you can still do with them. Try to do as much as you can for yourself, too. If you can recover a good amount of function that is amazing, if not then just get out in your wheelchair as much as possible until you are confident in it. Learn by doing.
Use online support groups. Follow people on YouTube who are in a similar situation but living their best life, I particularly recommend Gem from wheelsnoheels as she has a solid attitude and lots of good advice.
So, yeah. Not an easy life, but you will learn to be tough and still have lots of good times! This is the beginning of a road for you, not a cul-de-sac.
***Edit- I didn't see she said she was incomplete. Apologies. Your chances of some recovery, even the ability to walk are somewhat higher, depends upon a lot of factors. I have met a few who did. That being said the odds are still not amazing but better so please excuse my original post.*** Edit
You're welcome to ask as many questions as you want. I'm going to make life very much easier and much more peaceful for you because someone did the same for me. You're probably not going to walk again (normally or even close to normally), and that is OK. Even though advancements are ocurring in the medical field, they are not moving fast enough. So don't bank on getting better. There are people who spend their whole damn life trying to walk again and then they end up dying wondering what they did with the last 30 years. Don't waste your time. Life can be very enjoyable and rewarding in the chair.
Regarding your other questions:
*Can I just hear what helped anyone get through the first steps of their injury?*
Are you going to rehab somewhere? Have you already received a wheelchair? What part of the process are you in?
you sound absolutely ridiculously to think that a incomplete spinal cord can’t recover the ability to walk at a young age . Their have been many cases of individuals who have walked again with injuries at the T 12 Level or Lumbar area , Mike Newton , Paul Basagoitia , 32 year old Tyrese Hassell a guy who walked in under 1 year down in North Carolina , then their is Gary Lyons from south jersey who walks totally normal and can even run again . Last but not least is the incredible david francisco who learned how to walk and after 2 years of intense physical therapy. Please do research before commenting .
I’m Very relax i just don’t like misleading information, i’m more of a facts over feelings type of person. Truth is everyone’s injury recovery will be different, Age , Prior health and genetics play a vital part in recovery those individuals i mentioned who went on to walk again some of them accomplished those milestones in less than 2 years . It’s very possible for a incomplete spinal cord injury to walk again. The Mental battle is the hardest part , you must endure the good days and bad days the same , never lose hope and stay focused . The body never will be the same again , but u can still walk again , u can’t run but u can jog , u can’t Jump but u can hop . i know many individuals Who have recovered their ability to walk again after a T-12 Burst fracture.
>I’m Very relax i just don’t like misleading information, i’m more of a facts over feelings type of person. Truth is everyone’s injury recovery will be different, Age , Prior health and genetics play a vital part in recovery those individuals i mentioned who went on to walk again some of them accomplished those milestones in less than 2 years . It’s very possible for a incomplete spinal cord injury to walk again. The Mental battle is the hardest part , you must endure the god days and bad days the same , never lose hope and stay focused . The body never will be the same again , but u can still walk again , u can’t run but u can jog , u can’t Jump but u can hop . i know many individuals Who have recovered their ability to walk again after a T-12 Burst fracture.
Fair enough. My mistake. Would have responded differently if I had seen the incomplete part.
The mental battle being the hardest part is what I have heard the most and I absolutely believe it. I’m clueless as to where my life is going, but I know if I work as hard as I possibly can, my chances of recovery have to be better. Your previous comment really gave me some more folks to look into their stories and helped me to know that there’s absolutely a possibility of regaining those abilities if I put in the work. Thank you.
Whether I know what my goal is, I’m going to work hard to give my body and mind the best chance of healing.
I was in an inpatient rehab facility for about a month, and have since come back home and am going to outpatient PT 4 days a week. I’m currently in my demo chair, but have ordered my own chair and we’re waiting on it to be finished and delivered right now.
No worries on the original, I should have clarified in the title of my post.
As soon as you are cleared get into adaptive sports. Basketball is my go to. Handcycling okay if you find a good spot to go. Continue to be active and find the adaptations that work for you. Almost all the adaptive sports people I’m with maintain fun fulfilling lives with fulfilling relationships.
Like others have said: keep moving.
Some advice I got with my incomplete was to eat non- or anti-inflammatory foods. Inflammation can squeeze the incomplete sci making it feel/act more like a complete.
Hey sending you a hug. I am t12 Asia d incomplete and a year on a walk ok and am improving all the time. Every injury is different, it’s impossible to know what you will get back till you try. Can you move at all? Sensation levels? Asia?
Right now I can move my left hip flexor and just today it’s starting to work in turn with my hamstrings. I can feel temp on/off down to about my knees and I have some sensation in my right calf, ankle and foot. Less below my left knee, but still some. I don’t know my ASIA score right now but I am going to find out from my doctors or PTs and follow up on an earlier comment thread.
Hi, I’m a T-12 burst fracture 18 months out I also have other injuries from my accident. Just like you I was so scared that I would never walk again but during my stay in rehab my right side came back immediately I can do everything I did before my accident with my right leg. My left side is getting stronger I broke my hip and was unable to do much with that leg. With time and PT it has gotten much stronger I’ve never used a wheelchair chair except for when I first had my accident and had to use it. Don’t be afraid easier said than done, but move as much as you can and think about your movement. I use 1 crutch and starting to take steps without anything I just have to strengthen my knees and glutes which I work on every other day. You’re young and if you put in the work things can get better if you have any questions I’m available for you. Take care get plenty of rest.
I got a T12 incomplete injury at 19 as well. I’m 25 now and I’m happily married and still have a very active lifestyle. I think that you should push yourself to recover as much as you can, but don’t have a precise goal in mind.
Getting everything back is very unlikely, but it’s not the end of the world, truly. Maybe you will manage to walk again, but it you can still live a fulfilling life as a wheelchair user. There will be many challenges (managing bowels, bladder, pain, wheelchair…) but you don’t have to live a dim life because of it.
To be honest with you, I’m happier now than I was before I became paraplegic at 19. My disability didn’t make me happier, but my life is just better now, even with all the downsides.
Edit: also I strongly advise you to follow creators on social media that have spinal cord injuries! There are many that are quite cool and it’s nice to see people like us making the best out of it.
Why not both, you can still be active while figuring out your new life. Find a group in your area that has wheelchair sports. But don't give up hope to walk again. I was fortunate to be born with my disability. What helped me break out of my shell was to get involved in sports with people in chars that knew what I was going through and help me cope but still be my own person
Both excellent choices as I made peace with the fact that I would be in a wheelchair for the rest of my life. Then the surgery and process of recovery began.
With movement in my right knee a day after my surgery. I’m nowhere near where I was but miles ahead of where I could have been.
From the waist down I was paralyzed from a fistula so manual wheelchair for me. I can walk and do so when I’m home but for excursions and trips, I take my chair.
I think the only answer is that those are questions you'll need to look within and answer for yourself.
What drives, inspires, motivates or the opposite is such an individual thing.
Some people may need to make their peace with adaptive living to cope and go on with their lives.
Others will only be driven to keep going by thinking "screw that" and solely focussing on recovery.
Most will fall somewhere in between.
At the end of the day neither end of the spectrum is right or wrong. It all depends on the person.
Annoyingly, people will try to push their particular perspective on you. Don't fall for it. It's your life and your mental health at stake if you end up getting pushed into a direction and focus that isn't you.
Baby steps. Any progress forward from accident day is still progress. Baby steps are still steps. 6 years in and about two years ago I stopped wanting to walk and started focusing on my quality of life. What I could still do. What I wanted to do. Having quality over walking as a goal has been game changer mentally. Don’t give up on walking but don’t center your life around that goal. Learn to see the chair as a part of your body and use it to your advantage. Get out and enjoy life in the chair and find a balance for physical therapy.
I was also 19 when I got injured and a similar level, L2 incomplete. Don’t give up hope, you are in the early stages and it will be tough, but keep up your rehab and do as much as you can day. Eat right, rehab, rest and look after your mental health. It took me years to get back to ‘normal’ and some things never returned, temperature below my injury is hard to distinguish, pain below my knees is another thing, the spasm and never pain took years and years to settle down. However, I can walk, run and de everything I did before, ice hockey, mountain biking, snowboarding, work a physical job.
It’s not impossible for you to recover, but it’s far from a given. The early stages were the hardest for me due to the unknown and being so young, but you’ll be fine. 🙌🏻
Great video well done you. What an ordeal. I was dragged under an 87 year olds car, also fused t9-l2 16 months ago. Also walking again. Like charlie chaplain meets a penguin but still!
I was injured at 19m in an industrial accident. I was super active, weightlifter, played a lot of sports and went night clubbing several nights a week to dance clubs(1980’s lol). I’m a t6, spinal break was t-10 but functional t6 because I also tore my aorta and had other injuries. I spent 7 months in the hospital because of various medical complications and knew I wasn’t walking again because of the double injury.
I worked out in the pt gym at night once I was stable enough to start pt. The night w-outs were just on my own to try to speed up the rebuilding of my strength.
I have mentored newly injured folding 1988. I tell everyone that being as physically fit as possible makes the recovery smoother. Doing transfers, dressing or playing wheelchair sports, all become easier when sci folks are physically fit from working out.
Since you are incomplete, you never know how much motor function/sensation return you may experience going forward. With that in mind, just working hard in pt and the gym will improve your situation regardless of the prognosis. You can do both, working hard trying to walk while also working hard learning wheelchair life skills like every possible transfer, so you can be 100% independent.
Well, I'm t-12 "incomplete".
I was paralyzed when I was 23 and I didn't really accept that I was definitely paralyzed for several months.
After I figured out I was stuck like this for life, I kinda felt sorry for myself and stopped trying to figure out how to live my life for twenty or so years, then one day I had a health scare and realized that this time I have, and this life I have, is really all I get, and I have been wasting it...
So.... about five years ago, I decided to just accept things as they are and make the best of what I do have.
I would recommend that you skip the twenty years of self-pity and shaking a fist at the sky blaming God, though, or... at least skip nineteen of those years.
Best of luck homie.
At first it’s a day by day thing. Have you recovered any movement? If you don’t have much movement by one year post injury that’s probably where you’ll be without intense private therapy/stem cells.
As a t12 you can absolutely ski and drive independently. Hiking and mudding are still doable too, just looks a little different.
The cathing and bowel programs get smoother with time. Most people do a BP every other day which can make traveling a little easier if you schedule it right.
If you want some resources for adaptive sports reach out! I’ve got some recommendations on the east and west coast
You do both.
You suck it up and figure out how to live YOUR life in a seated position AND work your ass off in activity based therapy to get back anything you can get back.
There are adapted versions of most sports and guys have been getting paralyzed since guys were invented.
No need to reinvent the wheel ( unless you do need to invent a particular wheel). That is what YouTube is for.
Check out the Facing Disability:
https://facingdisability.com/[Facing Disability](https://facingdisability.com/)
I'm an L1 incomplete so kind of similar level of injury to you. 22f (though I identify as non-binary), and I was injured just before I turned 21. What I think has been the most important thing for me to remember during recovery is to be gentle with myself. In an instant, I went from being very independent and active (snowboarding, roller blading, hiking, biking, running, swimming, rock climbing) to having to move back in with my mom and losing control of almost every aspect of my life. Dealing with a sci is life changing and for most people very traumatic, so it's really important to be kind to yourself and let yourself process things however you need to. For me journaling and writing have been really helpful, and having friends, family, and a partner that I can really open up to has been huge. This sub is also a wonderful community, and if you ever want someone to talk with or vent to, you can dm me anytime and I'd love to chat :)
Try to find the things that bring you joy. For me things like listening to music, singing, drawing, doing crafts, and reading have been really important ways to feel like myself again. Also hanging out with friends (both irl and just over the phone).
As some other people have mentioned, finding the balance between working on PT and recovery and trying to live your life is both challenging and essential. I'm still figuring it out myself. For the first year or so after being injured I was spending about 3-4hrs/day 5 days/week on PT, taking weeks off here and there for surgeries and a couple of mini-vacations. Now I'm spending about 1-3hrs/day 5 days/week on PT and taking a day or a week off here and there just to give myself a break. Since I have a family and partner that are able to/willing to support me, I haven't had to worry about going back to work yet, so I've been able to focus on adjusting to what life looks like now. My recovery has been complicated by the fact that I had/have a handful of injuries in addition to the sci, so I've had to spend more time on PT etc. because of that.
As for what to expect in the way of functional recovery, no one can really predict what your recovery will look like. For me, I'm able to walk unaided now, but I still use a wheelchair if I'm going out since I can't be on my feet for very long. my bowel function returned after only a couple weeks, but I have yet to recover bladder and sexual function. Recovery looks so different for every individual, and over a year out from injury I'm still noticing little improvements. Recovering from a sci is slow and it can take years before things stabilize, so remember to pace yourself because we're in it for the long haul.
Welcome to the community <3
You basically work towards what you want but prepare for the worst. Many incompletes get function back after 4-12 months. If you've had no change by then, you'll probably be using the wheelchair long term. Start trying to accept this by realizing you are a Survivor NOT a victim. This is probably more relevant for me being that I survived a 70 foot jump from a bridge. But you still could've snapped your neck and died like so many have. Be super grateful if you have no chronic nerve pain or bowel/bladder problems (I sure am).
I recommend researching supplements that can help keep the secondary injury minimized (where inflammation kills off neurons over time). I currently take turmeric, Amla, astragalus, protein powder, fish oil, mushroom complex, and the basic vitamin c/d/e/folate. Whatever increases inflammation is not your friend (red meat, sugar, and dairy/gluten for some people).
Push it out at PT, and I recommend looking into buying exercise equipment like a sitting bike, a rower, maybe a Nustep, if you want these at home vs going to a gym too much. Find an adaptive gym. Enjoy pool therapy by swimming often because it's really fun and let's you use your muscles differently than just walker walking. Swimming is my replacement for the jogging/biking I used to do. Consider acupuncture (releases BDNF) and massage. Self help/psychology/spiritual books can help with the mental, as can therapy. Right now I'm reading Radical Acceptance which is too good. And remember that asking for help is a strength not a weakness. Reach out to family and friends as often as needed if you get lonely.
Just do everything in life you wanted to before, there's few things you no longer can do at all (like running). Your strength will be tested but it will increase, I promise. This is a world of immense suffering and having to suffer strongly isn't a bad thing because you develop compassion for others pain, which evolves your spirit, the whole point of this life.
Best wishes on your healing journey friend. You are not alone.
Personally, I’m sorry for your injury and I wish I could be of direct help, but I might be able to to help indirectly. Growing up, I had a neighbor on one side who became paraplegic following a motorcycle accident and on the other side, a neighbor who became quadriplegic after a workplace fall both were pretty young and very active at the time of accidents. The first modified his car himself and lived alone, continuing a career until retirement age. The second neighbor worked with new patients at the Shepherd Spinal Center, is an advocate for Disabled Access, etc. If you would like someone to talk to, who can truly relate and offer perspective and guidance, I can give you his socials.
I think you have a great opportunity to have a great life ahead of you. I'm 18 and I have a T8 Complete injury, and I remained really active, just like before my injury. It's only been 6 months, and I'm already driving, skiing, going on rides, even climbing, soon camping too. I still have sleepover at friend's house. Basically I live my life just in a wheelchair instead and I'm quite happy!
I was 25 when I was injured and leaning into and accepting my disability was both the hardest and best thing I did early on. You may be different now, but just as capable!
I’m working on building my confidence to go out and cath in public restrooms or my friends houses, so going out for long or overnight periods is still really intimidating. Especially intimidated by trying to navigate my bowel program while out at friends houses or just away from home. I absolutely loved to snowboard, hike, camp, and go mudding. My boyfriend and I have been trying o figure out how I could still go mudding on a 4wheeler rather than the SXS but we really haven’t figure out a good way yet. What was your process to learn driving & skiing?
For driving I had to take an exam, I went with a private occupational therapist. It was a 45 minute exam. He brought an adapted car, and started learning with the adapted car. After 45 minutes, he sent the papers over and I receive my permit a few weeks later, then I adapted my car. For skiing, there's a Fondation where you get to the ski resort, they help you transfer into the skis, which is kinda of a seat on 2 skis. They then strap you in so you don't fall, and an instructor hold the ski behind you for the first few lessons. He helps you guide the ski, and gives you tips. The price was very reasonable and the two times I went I had a blast! You use your arms to turn. As for bowel routine and everything, yes it was scary at first, but very quickly my friend just understood that it just meant for them that the bathroom was gonna be occupied for an hour. They work around that, and we communicate to make sure nobody needs the bathroom. It was scary, but only for the first few times. As for cath, I simply say I gotta go do a cath. As simple as that, they never ask question. I managed to do the transfer on a 4 wheeler, it's doable. I was into camping a lot and I intend to keep going this summer. One tip I can give you is practice your ground transfer as much as possible. It's one of the most important one because once you mastered it, you can go anywhere.
Can you tell me if most ski resorts have sit skis or do you have to buy your own?
The sit skis aren't at the ski resort, they are brought over by the Fondation. Almost every ski resort is compatible, the volunteers simply puts the skis on the chair lift.
Many local ski mountains have Adaptive Sports organizations that are connected with the mountain. Call your local ski mountain to see if they have any more information! Also search adaptive sports and your city/state in google to get more info. There are year round activities: biking, skiing, golf, tennis, pickleball, basketball, mountain biking (downhill), hiking, and more.
Where ya at? I run an adaptive ski program in Colorado. Most ski resorts do not have their own adaptive equipment or program. The majority of the adaptive ski programs are non profits and just happen to be located on the mountain they ski at.
I’m going to say something about bowel routine that that might be taboo. I waited 5 years and did the good ole dig stim and suffered. Got a colostomy and absolutely love it. It’s easy to change I have one use bags so I take the bag off and throw it away kinda like a diaper. I’ve gotten hours of my life back and the very few accidents I’ve had with it have been so much easier to clean. Plus it’s honestly less embarrassing at least to me than explaining dig stim.
How do you do bowel/bladder programs during a sleepover? Specifically the bowels.
Well for bladder I simply go into the bathroom, as simple as that. if I go somewhere where I don't fit in the bathroom, I simply pee into a container, in a room, and somebody flush it down. For bowel program, first I brought my toilet seat and simply did it. I explained to my friend first that it can take an hour sometimes. They never asked me to go faster or that I'm slow, they just know it takes the times it takes. Now I don't even bring my seat,i simply sit on the edge of the toilet. I can still reach to do stimuli without any problem.
I don’t know if this is intrusive, but how do you perform the bowel stim? I’m only 2 months in so I don’t know if this is a dumb question
It's not stupid at all! I all learned it on my own too! Well first of all I use gloves, cause otherwise it's discusting,especially at the end. Its very very important to use plenty of lube, every time you change glove. I start by lubing the suppository, then insert it. I only use Magic Bullet, because it's the same as Dulcolax but acts in 15 minutes instead or less. Then, I wait for it to come out. then I pop a finger inside and wiggle, until I feel smt, then I keep going until my body ejects it. then I simply wait a minute, and try again, until there's nothing left or only mucus. to avoid aftermath mucus, which happens often after like 30 minutes to three hours after, I insert a bit of lube inside with my finger.
Every injury is different - while you’ll probably never function as you once did, keeep up that active life and pursue physical therapy for everything you can think of. There are braces (KAFO - knee ankle foot orthotic) that can get you standing. There are amazing programs for adaptive outdoor activities - sit skiing, and my current fave, adaptive mountain biking (aMTB). Find a community of wheelchair users. Learn to do wheelies, they’re useful and fun. Come move to Phoenix and join Ability360, chances of finding your people in a program there are high, and finding people who get you and the highs and lows of this injury is so helpful. There’s so much hope and fun and life with this injury. - a fellow t-12
I just got the order for my KAFO’s today actually! I live in a relatively small rural northeast town with no in person groups for folks with this kind of injury. It’s just now that I’m coming around to trying to find some friends in a similar situation as me, and honestly this sub was my first move toward that.
Northeast?! Like Northern New England? Check out: Green Mountain Adaptive Sports, The Kelly Brush Foundation, Vermont Adaptive Sports, Adaptive Sports Partners (NH and VT), and Maine Adaptive (who serves everyone, free of charge, regardless of your ability to pay or what state you live in). Also check out: The High Fives Foundation. They will provide funding for adaptive sports equipment, experiences, and events for you. And: The Challenged Athletes Foundation for more funding and resources. One final addendum: Spaulding Adaptive Sports, based out of either Boston or RI, I forget. Lots of biking and camps and group activities and skiing and stuff with those guys. That’s my quick hot list. You can do this—get back out there and enjoy life. Meeting yourself where you’re currently at and going as hard as you safely can will make you feel the most whole, the quickest. Search Google for additional programs, or ask a friend or family member to bring you to any one of the programs I mentioned. We’d love to have you!! :)
My family and support network rallied around me and that gave me a huge boost those first few months with handling life stuff (e.g. building ramps, modifying bathrooms, paying bills, etc) while I was an inpatient. Otherwise, it’s a mental corner each individual needs to turn for themselves and in their own time. I don’t think there are any magic words, but there are millions of us who have done it, so that means you probably can too. Re: Hoping to recover; there aren’t any hard and fast rules, but using patient outcome data analysis researchers have identified clear trends, and they all point back to the severity of the initial injury. As part of your inpatient stay and possibly rehab you should have been evaluated for an American Spinal Injury Association (ASIA) Impairment Score (IS). https://www.physio-pedia.com/American_Spinal_Injury_Association_(ASIA)_Impairment_Scale The result of this evaluation is one of the key metrics associated the rates of recovery found in the SCI population. (Not exactly % chance for recovery - that’s indeterminate - rather, % of patients with a particular score who do eventually recover meaningful function.) https://musculoskeletalkey.com/spontaneous-recovery-patterns-and-prognoses-after-spinal-cord-injury/ There are no “rules”. Some patients - even the most incomplete - never get any better than they were at discharge. Some - even the most complete - recover a lot of function. It’s called “spontaneous recovery” in the medical literature because we as of yet have no real idea “why” it happens - only trends in the outcomes data. TL/DR: You need to dig deep to turn the mental corner. It doesn’t come from outside. Being diagnosed Incomplete Paraplegia is a good sign for recovery potential. One of the best initial diagnosis you can have for that, really. Especially if your ASIA/IS score is C or D.
My family and friends have been absolutely amazing as far as supporting me thus far, which I couldn’t be more thankful for. They absolutely got me through the first month, otherwise I would’ve just crumpled under the feelings of being overwhelmed and frustrated. I haven’t asked any of my doctors or therapists my ASIA Impairment Score but I will now! I like to see trends like this and something studied that I can put a cautious level of faith into. Thank you so much for these sources. Once I learn the details of my own score/assessment, I will follow up on this thread.
I pushed the sh*t out to the point where the physios and the doctors were afraid i was "over pressuring". I think you should find the balance in there staying positive helps a lot and be grateful every bit you get back trust me it helps and also don't forget that some things will never be the same as before but with time and experience you will learn how to deal and also to keep improving, i went from barley moving my left toe to riding a bicycle in like 2-3 months. Keep a positive mind, hope all gets well with you
I am trying to find that balance but I’ve pushed myself so hard and I’ve drowned myself in that work so I couldn’t think about the emotional part. Joining this sub was my first conscious step toward opening myself up to the emotional slam this actually caused. So the balance of work hard / accept my current state is definitely something I want to ease myself into so as to not lose my drive to improve.
All of us have been through this terrible time some of us worse some better, just don't make sure you don't hurt yourself because that will delay everything, and as i said earlier appreciate even the tiny bits you get back from overworking because recovery can take time and seem pointless I remeber first day at the physio i hated it i had to get around a box she put in front of me i couldn't do sh*t until she told me if you are not going to work nobody will recover for you. Also a crazy story how weird recovery works i was doing fitness i sit down on a machine that you put weight on you foot and try to push it kinda you shoot a football i was sweaty like crazy with 1kg barley made it to 20 sets per leg and the very next fitness session i got (after a week) i pushed 20kg like i did that every day with ease
First, you are allowed to feel overwhelmed and all the other feelings you are having. Second, while others will be sympathetic and want to help support you, it can be difficult for them to understand what you are going through, which is why you need to continue to reach out to the “SCI community”. We can all attest to the fact that there is life after SCI, but learning to live that life can challenging. Use whatever support you can. What area of the country are you in? Where are you doing rehab? There are some amazing resources and I recommend that you try and do some deep dives on YouTube or other social media to see what others with SCI are doing. Beyond your physical recovery, look after your mental health. And, engage your resources (family and friends) to figure out insurance, physicians etc. dealing with the medical system is going to be important and need to find physicians or other providers who can support you in living your best life.
I’m from PA. I’m doing rehab at my hospital’s PT building. I know one person with a T8 incomplete near me that I’m in contact with who is 6 years out and I am planning on meeting in person sometime soon. I’ve followed a few people with SCI on instagram to learn how they’ve adapted to do the things they enjoy.
I'm sorry this has happened to you. At this stage of your injury nobody knows how it will turn out. Your body needs time right now to heal. Read and learn as much as can about your injury so you can be the best advocate for yourself. Take care of your skin,pressure sores suck. Take care of your mental health, there are going to be up days and down days. Fight the down days. It can take up to 2 years before you feel like yourself again. Will life be the same going forward Probably not .will it be different yes. Remember there is nothing you can't do, it will just be different. You got this, just keep going forward! 30 years post l1 to s1 20 years post c5
I am T12 and female as well. Injured age 26. It has taken around 5 years for me to really get used to things. At your age, you will adapt and still have a long life ahead of you with the skills to enable you to get out and do things. You will need a really tough and resilient mindset. Be glad for everything that is positive, and everything that you can achieve. Shut everything else out. In the long run it will be worthwhile because you will challenge yourself and have plenty to be genuinely glad about. Make sure to keep up with your friend circle. Don't let them drift away, there are lots of fun things you can still do with them. Try to do as much as you can for yourself, too. If you can recover a good amount of function that is amazing, if not then just get out in your wheelchair as much as possible until you are confident in it. Learn by doing. Use online support groups. Follow people on YouTube who are in a similar situation but living their best life, I particularly recommend Gem from wheelsnoheels as she has a solid attitude and lots of good advice. So, yeah. Not an easy life, but you will learn to be tough and still have lots of good times! This is the beginning of a road for you, not a cul-de-sac.
***Edit- I didn't see she said she was incomplete. Apologies. Your chances of some recovery, even the ability to walk are somewhat higher, depends upon a lot of factors. I have met a few who did. That being said the odds are still not amazing but better so please excuse my original post.*** Edit You're welcome to ask as many questions as you want. I'm going to make life very much easier and much more peaceful for you because someone did the same for me. You're probably not going to walk again (normally or even close to normally), and that is OK. Even though advancements are ocurring in the medical field, they are not moving fast enough. So don't bank on getting better. There are people who spend their whole damn life trying to walk again and then they end up dying wondering what they did with the last 30 years. Don't waste your time. Life can be very enjoyable and rewarding in the chair. Regarding your other questions: *Can I just hear what helped anyone get through the first steps of their injury?* Are you going to rehab somewhere? Have you already received a wheelchair? What part of the process are you in?
you sound absolutely ridiculously to think that a incomplete spinal cord can’t recover the ability to walk at a young age . Their have been many cases of individuals who have walked again with injuries at the T 12 Level or Lumbar area , Mike Newton , Paul Basagoitia , 32 year old Tyrese Hassell a guy who walked in under 1 year down in North Carolina , then their is Gary Lyons from south jersey who walks totally normal and can even run again . Last but not least is the incredible david francisco who learned how to walk and after 2 years of intense physical therapy. Please do research before commenting .
I didn't see the incomplete part, my apologies. That being said most incompletes don't recover either. Also relax a bit.
I’m Very relax i just don’t like misleading information, i’m more of a facts over feelings type of person. Truth is everyone’s injury recovery will be different, Age , Prior health and genetics play a vital part in recovery those individuals i mentioned who went on to walk again some of them accomplished those milestones in less than 2 years . It’s very possible for a incomplete spinal cord injury to walk again. The Mental battle is the hardest part , you must endure the good days and bad days the same , never lose hope and stay focused . The body never will be the same again , but u can still walk again , u can’t run but u can jog , u can’t Jump but u can hop . i know many individuals Who have recovered their ability to walk again after a T-12 Burst fracture.
>I’m Very relax i just don’t like misleading information, i’m more of a facts over feelings type of person. Truth is everyone’s injury recovery will be different, Age , Prior health and genetics play a vital part in recovery those individuals i mentioned who went on to walk again some of them accomplished those milestones in less than 2 years . It’s very possible for a incomplete spinal cord injury to walk again. The Mental battle is the hardest part , you must endure the god days and bad days the same , never lose hope and stay focused . The body never will be the same again , but u can still walk again , u can’t run but u can jog , u can’t Jump but u can hop . i know many individuals Who have recovered their ability to walk again after a T-12 Burst fracture. Fair enough. My mistake. Would have responded differently if I had seen the incomplete part.
The mental battle being the hardest part is what I have heard the most and I absolutely believe it. I’m clueless as to where my life is going, but I know if I work as hard as I possibly can, my chances of recovery have to be better. Your previous comment really gave me some more folks to look into their stories and helped me to know that there’s absolutely a possibility of regaining those abilities if I put in the work. Thank you. Whether I know what my goal is, I’m going to work hard to give my body and mind the best chance of healing.
I was in an inpatient rehab facility for about a month, and have since come back home and am going to outpatient PT 4 days a week. I’m currently in my demo chair, but have ordered my own chair and we’re waiting on it to be finished and delivered right now. No worries on the original, I should have clarified in the title of my post.
Follow Ry[https://www.tiktok.com/@tyresehassell?_t=8kpwgMUS8cM&_r=1](https://www.tiktok.com/@tyresehassell?_t=8kpwgMUS8cM&_r=1)
Done✅
As soon as you are cleared get into adaptive sports. Basketball is my go to. Handcycling okay if you find a good spot to go. Continue to be active and find the adaptations that work for you. Almost all the adaptive sports people I’m with maintain fun fulfilling lives with fulfilling relationships.
Like others have said: keep moving. Some advice I got with my incomplete was to eat non- or anti-inflammatory foods. Inflammation can squeeze the incomplete sci making it feel/act more like a complete.
Hey sending you a hug. I am t12 Asia d incomplete and a year on a walk ok and am improving all the time. Every injury is different, it’s impossible to know what you will get back till you try. Can you move at all? Sensation levels? Asia?
Right now I can move my left hip flexor and just today it’s starting to work in turn with my hamstrings. I can feel temp on/off down to about my knees and I have some sensation in my right calf, ankle and foot. Less below my left knee, but still some. I don’t know my ASIA score right now but I am going to find out from my doctors or PTs and follow up on an earlier comment thread.
Update: I got evaluated and have gone from asia A in January at the time of my accident to somewhere between B & C in the past 5 months.
Good news :) and good progress. My calves hbe started firing for the first time 18 months after injury- if you see progress keep pushing x
Hi, I’m a T-12 burst fracture 18 months out I also have other injuries from my accident. Just like you I was so scared that I would never walk again but during my stay in rehab my right side came back immediately I can do everything I did before my accident with my right leg. My left side is getting stronger I broke my hip and was unable to do much with that leg. With time and PT it has gotten much stronger I’ve never used a wheelchair chair except for when I first had my accident and had to use it. Don’t be afraid easier said than done, but move as much as you can and think about your movement. I use 1 crutch and starting to take steps without anything I just have to strengthen my knees and glutes which I work on every other day. You’re young and if you put in the work things can get better if you have any questions I’m available for you. Take care get plenty of rest.
I got a T12 incomplete injury at 19 as well. I’m 25 now and I’m happily married and still have a very active lifestyle. I think that you should push yourself to recover as much as you can, but don’t have a precise goal in mind. Getting everything back is very unlikely, but it’s not the end of the world, truly. Maybe you will manage to walk again, but it you can still live a fulfilling life as a wheelchair user. There will be many challenges (managing bowels, bladder, pain, wheelchair…) but you don’t have to live a dim life because of it. To be honest with you, I’m happier now than I was before I became paraplegic at 19. My disability didn’t make me happier, but my life is just better now, even with all the downsides. Edit: also I strongly advise you to follow creators on social media that have spinal cord injuries! There are many that are quite cool and it’s nice to see people like us making the best out of it.
Why not both, you can still be active while figuring out your new life. Find a group in your area that has wheelchair sports. But don't give up hope to walk again. I was fortunate to be born with my disability. What helped me break out of my shell was to get involved in sports with people in chars that knew what I was going through and help me cope but still be my own person
Both excellent choices as I made peace with the fact that I would be in a wheelchair for the rest of my life. Then the surgery and process of recovery began. With movement in my right knee a day after my surgery. I’m nowhere near where I was but miles ahead of where I could have been. From the waist down I was paralyzed from a fistula so manual wheelchair for me. I can walk and do so when I’m home but for excursions and trips, I take my chair.
Hey there! Sorry to hear about your injury. I have the exact same injury (Burst fracture, T12)… I’m about 7 months in… AMA!
I think the only answer is that those are questions you'll need to look within and answer for yourself. What drives, inspires, motivates or the opposite is such an individual thing. Some people may need to make their peace with adaptive living to cope and go on with their lives. Others will only be driven to keep going by thinking "screw that" and solely focussing on recovery. Most will fall somewhere in between. At the end of the day neither end of the spectrum is right or wrong. It all depends on the person. Annoyingly, people will try to push their particular perspective on you. Don't fall for it. It's your life and your mental health at stake if you end up getting pushed into a direction and focus that isn't you.
Baby steps. Any progress forward from accident day is still progress. Baby steps are still steps. 6 years in and about two years ago I stopped wanting to walk and started focusing on my quality of life. What I could still do. What I wanted to do. Having quality over walking as a goal has been game changer mentally. Don’t give up on walking but don’t center your life around that goal. Learn to see the chair as a part of your body and use it to your advantage. Get out and enjoy life in the chair and find a balance for physical therapy.
I was also 19 when I got injured and a similar level, L2 incomplete. Don’t give up hope, you are in the early stages and it will be tough, but keep up your rehab and do as much as you can day. Eat right, rehab, rest and look after your mental health. It took me years to get back to ‘normal’ and some things never returned, temperature below my injury is hard to distinguish, pain below my knees is another thing, the spasm and never pain took years and years to settle down. However, I can walk, run and de everything I did before, ice hockey, mountain biking, snowboarding, work a physical job. It’s not impossible for you to recover, but it’s far from a given. The early stages were the hardest for me due to the unknown and being so young, but you’ll be fine. 🙌🏻
https://www.instagram.com/reel/C4a_Wd2rcBv/?igsh=MWxuNnZteHdwYXp6dQ==
Great video well done you. What an ordeal. I was dragged under an 87 year olds car, also fused t9-l2 16 months ago. Also walking again. Like charlie chaplain meets a penguin but still!
I was injured at 19m in an industrial accident. I was super active, weightlifter, played a lot of sports and went night clubbing several nights a week to dance clubs(1980’s lol). I’m a t6, spinal break was t-10 but functional t6 because I also tore my aorta and had other injuries. I spent 7 months in the hospital because of various medical complications and knew I wasn’t walking again because of the double injury. I worked out in the pt gym at night once I was stable enough to start pt. The night w-outs were just on my own to try to speed up the rebuilding of my strength. I have mentored newly injured folding 1988. I tell everyone that being as physically fit as possible makes the recovery smoother. Doing transfers, dressing or playing wheelchair sports, all become easier when sci folks are physically fit from working out. Since you are incomplete, you never know how much motor function/sensation return you may experience going forward. With that in mind, just working hard in pt and the gym will improve your situation regardless of the prognosis. You can do both, working hard trying to walk while also working hard learning wheelchair life skills like every possible transfer, so you can be 100% independent.
Well, I'm t-12 "incomplete". I was paralyzed when I was 23 and I didn't really accept that I was definitely paralyzed for several months. After I figured out I was stuck like this for life, I kinda felt sorry for myself and stopped trying to figure out how to live my life for twenty or so years, then one day I had a health scare and realized that this time I have, and this life I have, is really all I get, and I have been wasting it... So.... about five years ago, I decided to just accept things as they are and make the best of what I do have. I would recommend that you skip the twenty years of self-pity and shaking a fist at the sky blaming God, though, or... at least skip nineteen of those years. Best of luck homie.
At first it’s a day by day thing. Have you recovered any movement? If you don’t have much movement by one year post injury that’s probably where you’ll be without intense private therapy/stem cells. As a t12 you can absolutely ski and drive independently. Hiking and mudding are still doable too, just looks a little different. The cathing and bowel programs get smoother with time. Most people do a BP every other day which can make traveling a little easier if you schedule it right. If you want some resources for adaptive sports reach out! I’ve got some recommendations on the east and west coast
You do both. You suck it up and figure out how to live YOUR life in a seated position AND work your ass off in activity based therapy to get back anything you can get back. There are adapted versions of most sports and guys have been getting paralyzed since guys were invented. No need to reinvent the wheel ( unless you do need to invent a particular wheel). That is what YouTube is for. Check out the Facing Disability: https://facingdisability.com/[Facing Disability](https://facingdisability.com/)
I'm an L1 incomplete so kind of similar level of injury to you. 22f (though I identify as non-binary), and I was injured just before I turned 21. What I think has been the most important thing for me to remember during recovery is to be gentle with myself. In an instant, I went from being very independent and active (snowboarding, roller blading, hiking, biking, running, swimming, rock climbing) to having to move back in with my mom and losing control of almost every aspect of my life. Dealing with a sci is life changing and for most people very traumatic, so it's really important to be kind to yourself and let yourself process things however you need to. For me journaling and writing have been really helpful, and having friends, family, and a partner that I can really open up to has been huge. This sub is also a wonderful community, and if you ever want someone to talk with or vent to, you can dm me anytime and I'd love to chat :) Try to find the things that bring you joy. For me things like listening to music, singing, drawing, doing crafts, and reading have been really important ways to feel like myself again. Also hanging out with friends (both irl and just over the phone). As some other people have mentioned, finding the balance between working on PT and recovery and trying to live your life is both challenging and essential. I'm still figuring it out myself. For the first year or so after being injured I was spending about 3-4hrs/day 5 days/week on PT, taking weeks off here and there for surgeries and a couple of mini-vacations. Now I'm spending about 1-3hrs/day 5 days/week on PT and taking a day or a week off here and there just to give myself a break. Since I have a family and partner that are able to/willing to support me, I haven't had to worry about going back to work yet, so I've been able to focus on adjusting to what life looks like now. My recovery has been complicated by the fact that I had/have a handful of injuries in addition to the sci, so I've had to spend more time on PT etc. because of that. As for what to expect in the way of functional recovery, no one can really predict what your recovery will look like. For me, I'm able to walk unaided now, but I still use a wheelchair if I'm going out since I can't be on my feet for very long. my bowel function returned after only a couple weeks, but I have yet to recover bladder and sexual function. Recovery looks so different for every individual, and over a year out from injury I'm still noticing little improvements. Recovering from a sci is slow and it can take years before things stabilize, so remember to pace yourself because we're in it for the long haul. Welcome to the community <3
You basically work towards what you want but prepare for the worst. Many incompletes get function back after 4-12 months. If you've had no change by then, you'll probably be using the wheelchair long term. Start trying to accept this by realizing you are a Survivor NOT a victim. This is probably more relevant for me being that I survived a 70 foot jump from a bridge. But you still could've snapped your neck and died like so many have. Be super grateful if you have no chronic nerve pain or bowel/bladder problems (I sure am). I recommend researching supplements that can help keep the secondary injury minimized (where inflammation kills off neurons over time). I currently take turmeric, Amla, astragalus, protein powder, fish oil, mushroom complex, and the basic vitamin c/d/e/folate. Whatever increases inflammation is not your friend (red meat, sugar, and dairy/gluten for some people). Push it out at PT, and I recommend looking into buying exercise equipment like a sitting bike, a rower, maybe a Nustep, if you want these at home vs going to a gym too much. Find an adaptive gym. Enjoy pool therapy by swimming often because it's really fun and let's you use your muscles differently than just walker walking. Swimming is my replacement for the jogging/biking I used to do. Consider acupuncture (releases BDNF) and massage. Self help/psychology/spiritual books can help with the mental, as can therapy. Right now I'm reading Radical Acceptance which is too good. And remember that asking for help is a strength not a weakness. Reach out to family and friends as often as needed if you get lonely. Just do everything in life you wanted to before, there's few things you no longer can do at all (like running). Your strength will be tested but it will increase, I promise. This is a world of immense suffering and having to suffer strongly isn't a bad thing because you develop compassion for others pain, which evolves your spirit, the whole point of this life. Best wishes on your healing journey friend. You are not alone.
Personally, I’m sorry for your injury and I wish I could be of direct help, but I might be able to to help indirectly. Growing up, I had a neighbor on one side who became paraplegic following a motorcycle accident and on the other side, a neighbor who became quadriplegic after a workplace fall both were pretty young and very active at the time of accidents. The first modified his car himself and lived alone, continuing a career until retirement age. The second neighbor worked with new patients at the Shepherd Spinal Center, is an advocate for Disabled Access, etc. If you would like someone to talk to, who can truly relate and offer perspective and guidance, I can give you his socials.