To all those who've been paralyzed (or had a loved one become paralyzed)

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1/23/2020 8:27 PM

Hi All,

I've just had a loved one recently was told he won't be able to move his left leg below the knee for the rest of his life. My question is- how did you cope in those beginning days? What helped? What really pissed you off? Sports psychiatrists? Books? Tell me!

What would did you want from those close to you? How can we help best?

It's so hard for a strong, physically active and independent men to come to grips with their new, more dependent roles in their life.

Thanks in advance and much love. -Kyle

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'16 FC350

1/23/2020 9:17 PM

Im not but have multiple friends that are. No 2 people will cope the same. Strong support from those around him is a must. He has to understand though as bad as it is it is not the end of his life. Life will get better for him. I do know some people and some guys on here that would give there left leg to be in his shoes.
Best of luck to him. If he's a moto guy have him stop in to chat.

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1/23/2020 9:29 PM
Edited Date/Time: 1/23/2020 9:31 PM

Don't change anything you do for him than you used to ordinarily for him except for what he needs.

It's all the same, but different.

Got the T shirt.

Just don't quit.

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Go for it! Don't let a little thing like fear, or common sense hold you back.

1/23/2020 10:52 PM

I am a Guillain Barre Syndrome survivor, I was paralyzed from the neck down in an era where medicine for this was almost experimental. In my case, I could have died, or I could have had a partial recovery, or a full recovery, they never know. I know it isn't cool to say anything mushy on vital, but I 100% believe having positive influences around me helped me steer my body (nerves) to heal. I had doctors bringing in folks who have gone through the same thing with positive outcomes coming in to talk to me, family visits, good nurses, just good vibes all around at a time where it is very easy to throw out an anchor and drag yourself into the ground.

I know all circumstances are different, but bring your loved one as much positive energy as you can. Let them know of folks who have been through the same situations who made the most of it, prove to them that it can be OK and give them hope. I will never forget a guy coming in to see my as I laid there in the ICU, his face still paralyzed on one side, and would be that way likely forever, but the guy was built like a rock, found faith, and was so happy to tell me if I tried, things could be OK (like he was). Reassurance and hope can make miracles happen.

I am sorry for your loved ones struggles, good on you for doing what you can.

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1/23/2020 11:07 PM

I cant offer any advice but I can say a prayer and will be sending positive vibes and lifting all of you up from afar.

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1/24/2020 7:38 AM
Edited Date/Time: 1/24/2020 7:39 AM

Look on the bright side - if only one lower leg is paralyzed, he’s already got a leg up. Will he be able to use a prosthetic to walk? My brother lost use of one of his lower legs and he’s led a relatively active, fruitful life.

Human bodies and minds are incredibly adaptable. He’ll need to find a way to stay active.

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1/24/2020 9:04 AM
Edited Date/Time: 1/24/2020 9:46 AM

Jeez...as an old timer, every time I see a thread like this or someone mentions David Bailey, Doug Henry or any of the other pros that have been seriously injured, I think how different things used to be. Before SX became huge, and before SX-type tracks replaced mostly natural terrain outdoor tracks...speeds were lower, horsepower was less, and jumps were not treetop tall and didn't have near vertical takeoff ramps. There were serious injuries...this sport has always been a dangerous one...but they weren't anywhere near as common or commonly career ending. It jus seems like "yesterday" was better...but I know nobody wants to hear that.

My heart goes out to not only those young men who have been injured...but also to those who love, support and care for them.

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1/24/2020 9:31 AM
Edited Date/Time: 1/24/2020 9:31 AM

I broke my back racing in 2011 when i was 20. I broke my T12, L1,L2 and they fused quite a few extra vertebraes with those. I did have some cord damage and cord shock from the injury. So right from the beginning you have to figure out whether it is a 'complete spinal cord injury' or 'incomplete'. Mine was incomplete. My cord didn't get severed but it had some good damage to it and stayed in shock for a good 1.5 years. Then it started to show its true long term effects. But at no point did any Dr tell me I would never walk again. They just kept advising, nothing is for certain and they are complicated injuries. It did take me a couple years to stand..walk and then slow progress. 9 years later, i have a solid gate going. But with its lasting effects and spent many years relying on my chair to get me around. The inability to walk or stand honestly wasn't even the thing that pissed me off the most. It was all the internal organ type stuff cord damage effects that was the hardest. The next hardest part was replacing that adrenaline i got from riding. I tried EVERY adapted sport you could to get that same hype from riding.
For people close to me. No one could understand that place i was in, of being able to kind of move my legs and barely able to stand with aid, and then expect me to just be 'fine' and walk with no issues. My dad would say to me, well you were walking at rehab today why do you need to bring your chair.. and it would be like. Yes i walked, with lots of support from walkers and weight harnesses and dr's helping and that drained my energy to attempt walking later that day.. so i had days where i wished, i had a complete injury and no ability.

Anyways, sorry for the long post..I could go on forever.. feel free to hit me up with some questions

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1/24/2020 11:06 AM

I don't mean to come across as a dick but not being able to move 1 leg below the knee is in no way at all comparable to being paralyzed waist-down or neck-down. Mav, Scottie, and myself are all paralyzed and in wheelchairs from racing MX and I can safely say for those guys we'd give anything to only have a problem with half of a leg. Hell I would still be riding my bike if that were the only problem.

When most people think of paralysis, they just think you can't walk. They don't realize the biggest issue we face is actually things like bowel & bladder control, urinary tract infections that routinely put us in the hospital, pressure sores, leg and stomach spasms that make you feel like you're being punched in the gut. I work a 9-5 job as a real estate underwriter so each day getting dressed is a struggle, lifting myself in and out of my truck and breaking down my chair is a struggle, my left shoulder has a major rotator cuff tear and bicep tendon tear that hurts like hell at the end of each day but I can't get the surgery to fix it because I can't afford to be off work for the 6 months it will take for full recovery. I don't get disability because I make more than the limit is allowed at my day job. The problems run much, much deeper than people realize.

My best advice? Have that person read my post so they understand how lucky they are to only have an issue with their lower leg and can still do so many things people stuck in chairs can't. Sounds crude but personally when I'm feeling down I just remember all the guys I know who are paralyzed from the neck down and can't do half the things I still can and it makes me feel very grateful. I still love life and make the best of things. And I'll tell you right now, if I walked again tomorrow the first thing I'd do is buy a new bike and go straight back to riding.

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MCM2 name - RXR_ProKawi24
PS4 Gamertag "Rocko24" - Add me for MES2 (soon to be MES3)

1/24/2020 11:22 AM

^That's a good post. I don't want to belittle anybody's handicap, not being in their shoes. However. having no sensation or control below the knee is not the worst thing that could happen. Life goes on, and that person will just have to adjust.

I am always in awe of the people who take a condition such as paralysis and move on with life. It must be really hard to do. Big props to you guys.

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Braaapin' aint easy.

1/24/2020 12:40 PM

ProKawi24 wrote:

I don't mean to come across as a dick but not being able to move 1 leg below the knee is in no way at all comparable to being paralyzed waist-down or neck-down. Mav, Scottie, and myself are all paralyzed and in wheelchairs from racing MX and I can safely say for those guys we'd give anything to only have a problem with half of a leg. Hell I would still be riding my bike if that were the only problem.

When most people think of paralysis, they just think you can't walk. They don't realize the biggest issue we face is actually things like bowel & bladder control, urinary tract infections that routinely put us in the hospital, pressure sores, leg and stomach spasms that make you feel like you're being punched in the gut. I work a 9-5 job as a real estate underwriter so each day getting dressed is a struggle, lifting myself in and out of my truck and breaking down my chair is a struggle, my left shoulder has a major rotator cuff tear and bicep tendon tear that hurts like hell at the end of each day but I can't get the surgery to fix it because I can't afford to be off work for the 6 months it will take for full recovery. I don't get disability because I make more than the limit is allowed at my day job. The problems run much, much deeper than people realize.

My best advice? Have that person read my post so they understand how lucky they are to only have an issue with their lower leg and can still do so many things people stuck in chairs can't. Sounds crude but personally when I'm feeling down I just remember all the guys I know who are paralyzed from the neck down and can't do half the things I still can and it makes me feel very grateful. I still love life and make the best of things. And I'll tell you right now, if I walked again tomorrow the first thing I'd do is buy a new bike and go straight back to riding.

That post hits the nail right on the head, I'm not paralyzed myself but my brother-in-law is and the things he is gone true I wouldn't wish on my worst enemy. he's been in a wheelchair for 30 years just got out of a stint of being in the hospital for over a year because of a surgery replace the rods in his back that went bad. Still has a bed sore on his back that you can visibly see the bone that won't heal. He also worked and this recent setback has forced him to retire.

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1/24/2020 3:59 PM

ProKawi24 wrote:

I don't mean to come across as a dick but not being able to move 1 leg below the knee is in no way at all comparable to being paralyzed waist-down or neck-down. Mav, Scottie, and myself are all paralyzed and in wheelchairs from racing MX and I can safely say for those guys we'd give anything to only have a problem with half of a leg. Hell I would still be riding my bike if that were the only problem.

When most people think of paralysis, they just think you can't walk. They don't realize the biggest issue we face is actually things like bowel & bladder control, urinary tract infections that routinely put us in the hospital, pressure sores, leg and stomach spasms that make you feel like you're being punched in the gut. I work a 9-5 job as a real estate underwriter so each day getting dressed is a struggle, lifting myself in and out of my truck and breaking down my chair is a struggle, my left shoulder has a major rotator cuff tear and bicep tendon tear that hurts like hell at the end of each day but I can't get the surgery to fix it because I can't afford to be off work for the 6 months it will take for full recovery. I don't get disability because I make more than the limit is allowed at my day job. The problems run much, much deeper than people realize.

My best advice? Have that person read my post so they understand how lucky they are to only have an issue with their lower leg and can still do so many things people stuck in chairs can't. Sounds crude but personally when I'm feeling down I just remember all the guys I know who are paralyzed from the neck down and can't do half the things I still can and it makes me feel very grateful. I still love life and make the best of things. And I'll tell you right now, if I walked again tomorrow the first thing I'd do is buy a new bike and go straight back to riding.

Well said brother. Hey i just sent you a PM, let me know if you get it.

Not a whole lot to add except to treat him the same way you did before his accident, as if nothing has changed. Easier said than done i know, but he will appreciate it in the long run.

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-OC
"Feed The Bull"
Twitter: @ocscottie | Facebook

1/24/2020 4:09 PM

ProKawi24 wrote:

I don't mean to come across as a dick but not being able to move 1 leg below the knee is in no way at all comparable to being paralyzed waist-down or neck-down. Mav, Scottie, and myself are all paralyzed and in wheelchairs from racing MX and I can safely say for those guys we'd give anything to only have a problem with half of a leg. Hell I would still be riding my bike if that were the only problem.

When most people think of paralysis, they just think you can't walk. They don't realize the biggest issue we face is actually things like bowel & bladder control, urinary tract infections that routinely put us in the hospital, pressure sores, leg and stomach spasms that make you feel like you're being punched in the gut. I work a 9-5 job as a real estate underwriter so each day getting dressed is a struggle, lifting myself in and out of my truck and breaking down my chair is a struggle, my left shoulder has a major rotator cuff tear and bicep tendon tear that hurts like hell at the end of each day but I can't get the surgery to fix it because I can't afford to be off work for the 6 months it will take for full recovery. I don't get disability because I make more than the limit is allowed at my day job. The problems run much, much deeper than people realize.

My best advice? Have that person read my post so they understand how lucky they are to only have an issue with their lower leg and can still do so many things people stuck in chairs can't. Sounds crude but personally when I'm feeling down I just remember all the guys I know who are paralyzed from the neck down and can't do half the things I still can and it makes me feel very grateful. I still love life and make the best of things. And I'll tell you right now, if I walked again tomorrow the first thing I'd do is buy a new bike and go straight back to riding.

Mad respect to you dude.

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1/24/2020 4:17 PM

A guy felt sorry for himself for not having any shoes. until he saw a man without feet..

I've been paralyzed for 16 years chest down. It could always be worse. Pm me if you want to ask any question..

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1/24/2020 5:12 PM
Edited Date/Time: 1/24/2020 6:09 PM

I'd like to share a portion of my story, my wife was diagnosed with muscular dystrophy. Her DNA does not produce the protein to rebuild her muscle fibers. It's a progressive condition that we've been able to adjust and accommodate but has left her dependent on a power wheelchair and multiple devices to carry on with daily life. It's a challenge that puts life into perspective and as a person you tend to love a little more. I will say that the will of your soul can carry you through anything and having faith in some greater good. You learn that the boundaries you thought you had were just a starting point. We have a very loving and supportive family that helps keep the wheel turning. I can elaborate and give examples until i'm tired of typing but in the end the simplest words of advice i can give is as follows. There are only two options- you either WILL or you WON'T.

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1/25/2020 9:10 AM

ProKawi24 wrote:

I don't mean to come across as a dick but not being able to move 1 leg below the knee is in no way at all comparable to being paralyzed waist-down or neck-down. Mav, Scottie, and myself are all paralyzed and in wheelchairs from racing MX and I can safely say for those guys we'd give anything to only have a problem with half of a leg. Hell I would still be riding my bike if that were the only problem.

When most people think of paralysis, they just think you can't walk. They don't realize the biggest issue we face is actually things like bowel & bladder control, urinary tract infections that routinely put us in the hospital, pressure sores, leg and stomach spasms that make you feel like you're being punched in the gut. I work a 9-5 job as a real estate underwriter so each day getting dressed is a struggle, lifting myself in and out of my truck and breaking down my chair is a struggle, my left shoulder has a major rotator cuff tear and bicep tendon tear that hurts like hell at the end of each day but I can't get the surgery to fix it because I can't afford to be off work for the 6 months it will take for full recovery. I don't get disability because I make more than the limit is allowed at my day job. The problems run much, much deeper than people realize.

My best advice? Have that person read my post so they understand how lucky they are to only have an issue with their lower leg and can still do so many things people stuck in chairs can't. Sounds crude but personally when I'm feeling down I just remember all the guys I know who are paralyzed from the neck down and can't do half the things I still can and it makes me feel very grateful. I still love life and make the best of things. And I'll tell you right now, if I walked again tomorrow the first thing I'd do is buy a new bike and go straight back to riding.

At risk of taking this thread off into the way off course..

I don’t know the severity of your shoulder injury, but is it beyond PRP as an alternative to surgery? I tore my right shoulder up, and had a few rounds of PRP injections (with PT/OT) in lieu of surgery, and the results have been really good fairly quick

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1/25/2020 11:33 AM

I wish I had videos of my friend Aron. He became an incomplete quad in 1994 maybe at amateur day of the San Diego SX. Around 2011 maybe, he shows up at a FPMX race with a clapped out 93 CR250. Same bike he got hurt on. He asked us to start the bike and then help him on. I don;t know what the fuck we were thinking but we did it. He kind of putted around and said he wanted to race. He goes to the dog house at Glen Helen and leans on it until the gate drops.
He the bought a 08 YZ250F, rode that for a few years and then upgraded to a 17 KTM 350sxf. it is set up with a rekluse auto clutch and a left hand rear brake. It's amazing to see him shuffle over to his bike, get on, with assistance until he gets tired and motor off. He goes a lot faster than you would think for a guy with no cage. He's wrecked and been injured but he keeps comng back.
Another friend was injured in a moped accident in Mexico as a kid. It was so wrecked the doctors removed the fibula. He uses a brace but without it his leg would flop around. He still rides, uses one of those pit bike boots and a good shin guard.
All this blah, blah, blah so you can pass on to your friend that if he really want's to suck it up, there's no reason not to give it a try.

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The older I get, the faster I was.

1/26/2020 1:16 AM

bigdaddy809 wrote:

I broke my back racing in 2011 when i was 20. I broke my T12, L1,L2 and they fused quite a few extra vertebraes with those. I did have some cord damage and cord shock from the injury. So right from the beginning you have to figure out whether it is a 'complete spinal cord injury' or 'incomplete'. Mine was incomplete. My cord didn't get severed but it had some good damage to it and stayed in shock for a good 1.5 years. Then it started to show its true long term effects. But at no point did any Dr tell me I would never walk again. They just kept advising, nothing is for certain and they are complicated injuries. It did take me a couple years to stand..walk and then slow progress. 9 years later, i have a solid gate going. But with its lasting effects and spent many years relying on my chair to get me around. The inability to walk or stand honestly wasn't even the thing that pissed me off the most. It was all the internal organ type stuff cord damage effects that was the hardest. The next hardest part was replacing that adrenaline i got from riding. I tried EVERY adapted sport you could to get that same hype from riding.
For people close to me. No one could understand that place i was in, of being able to kind of move my legs and barely able to stand with aid, and then expect me to just be 'fine' and walk with no issues. My dad would say to me, well you were walking at rehab today why do you need to bring your chair.. and it would be like. Yes i walked, with lots of support from walkers and weight harnesses and dr's helping and that drained my energy to attempt walking later that day.. so i had days where i wished, i had a complete injury and no ability.

Anyways, sorry for the long post..I could go on forever.. feel free to hit me up with some questions

Hey did you get my private message on here man?

And for the OP, like the one guy said people would love to be as healthy as your friend is. It’s new so it’s a shock for him. But as long as that’s his only issue he will learn to cope and will be back to normal mentally or stronger sooner than you think. Just be for there for him if he needs you. And If he’s like me sometimes he may just want to be left alone.

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1/26/2020 12:37 PM

Thank you to all who answered above! It's much appreciated as we go through this time of sudden adjustment.

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'16 FC350

1/28/2020 2:19 PM

peltier626 wrote:

I'd like to share a portion of my story, my wife was diagnosed with muscular dystrophy. Her DNA does not produce the protein to rebuild her muscle fibers. It's a progressive condition that we've been able to adjust and accommodate but has left her dependent on a power wheelchair and multiple devices to carry on with daily life. It's a challenge that puts life into perspective and as a person you tend to love a little more. I will say that the will of your soul can carry you through anything and having faith in some greater good. You learn that the boundaries you thought you had were just a starting point. We have a very loving and supportive family that helps keep the wheel turning. I can elaborate and give examples until i'm tired of typing but in the end the simplest words of advice i can give is as follows. There are only two options- you either WILL or you WON'T.

Lots of respect to you dude. Sometimes we (as in the person in the wheelchair) tend to forget the effort required by our loved ones to help care for us. Luckily I was only 12 years old when my accident happened so I had my parents and sister there to take care of me and my mom was just finishing up nursing school. You have no idea how much your help means to your wife. It can be hard for us to say it but just know you mean the world to her and you deserve tons of respect and praise for what you do.

Like you said it comes down to you either will or won't. You either give up or get going.

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MCM2 name - RXR_ProKawi24
PS4 Gamertag "Rocko24" - Add me for MES2 (soon to be MES3)

1/28/2020 2:26 PM

Wade221 wrote:

At risk of taking this thread off into the way off course..

I don’t know the severity of your shoulder injury, but is it beyond PRP as an alternative to surgery? I tore my right shoulder up, and had a few rounds of PRP injections (with PT/OT) in lieu of surgery, and the results have been really good fairly quick

I have no idea what that is. A quick google search for PRP shows Platelet-rich-Plasma....is that what you're referring to? If it is, I've never heard of it. I have had Cortisone injections done a few times but all they do is help for about a week and goes away. The Dr said I can't keep getting them I guess it's really bad for your body or can end up causing some serious damage.

The main reason why recovery for me would be 6 months is because I use my left shoulder for a lot of heavy lifting. I'm 6'1 tall and about 195 lbs but I drive a Ram 1500 truck so I use my left arm to lift my entire body up into the seat then have to lean down to lift up my chair and take it apart to put in the passenger seat. I would have my truck lowered but it's a bit expensive to by the parts. I did it with my last truck when I was a teenager with disposable income and it was like $1500 in parts & labor mostly because the front control arms.

I also mostly use my left arm for lifting myself in and out of bed, the shower, the toilet, the couch, etc. I wouldn't be able to do all of this for about 6 months after surgery and going on disability to cover my bills won't cut it. My fiance is a paramedic so she can help me but she works full time and can't always be there to help me for that long.

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MCM2 name - RXR_ProKawi24
PS4 Gamertag "Rocko24" - Add me for MES2 (soon to be MES3)

1/28/2020 2:28 PM

ocscottie wrote:

Well said brother. Hey i just sent you a PM, let me know if you get it.

Not a whole lot to add except to treat him the same way you did before his accident, as if nothing has changed. Easier said than done i know, but he will appreciate it in the long run.

Yo Scottie I just saw your PM. My Vital account was setup with an old email I hardly ever log into. I just updated my email for Vital and sent you a PM on here also.

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MCM2 name - RXR_ProKawi24
PS4 Gamertag "Rocko24" - Add me for MES2 (soon to be MES3)

1/28/2020 3:10 PM

ProKawi24 wrote:

I have no idea what that is. A quick google search for PRP shows Platelet-rich-Plasma....is that what you're referring to? If it is, I've never heard of it. I have had Cortisone injections done a few times but all they do is help for about a week and goes away. The Dr said I can't keep getting them I guess it's really bad for your body or can end up causing some serious damage.

The main reason why recovery for me would be 6 months is because I use my left shoulder for a lot of heavy lifting. I'm 6'1 tall and about 195 lbs but I drive a Ram 1500 truck so I use my left arm to lift my entire body up into the seat then have to lean down to lift up my chair and take it apart to put in the passenger seat. I would have my truck lowered but it's a bit expensive to by the parts. I did it with my last truck when I was a teenager with disposable income and it was like $1500 in parts & labor mostly because the front control arms.

I also mostly use my left arm for lifting myself in and out of bed, the shower, the toilet, the couch, etc. I wouldn't be able to do all of this for about 6 months after surgery and going on disability to cover my bills won't cut it. My fiance is a paramedic so she can help me but she works full time and can't always be there to help me for that long.

Correct. Platelet Rich Plasma. I can’t say it works for everyone, but I have seen improvements, so far, with my torn labrum and rotator cuff repair post injection. Where as the cortisone is just a numbing agent, really.

Just my $.02. You seem like a good NorCal dude, so weren’t sure if you were tracking 🤷🏻‍♂️

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1/28/2020 3:20 PM

Wade221 wrote:

Correct. Platelet Rich Plasma. I can’t say it works for everyone, but I have seen improvements, so far, with my torn labrum and rotator cuff repair post injection. Where as the cortisone is just a numbing agent, really.

Just my $.02. You seem like a good NorCal dude, so weren’t sure if you were tracking 🤷🏻‍♂️

I'll look into it. I see my Dr every 3 months for urine tests to make sure I don't have stones forming. I had to have surgery 3 years ago to remove some major bladder stones that formed (another thing to worry about with paralysis) so I'll bring it up and see what she says.

Were you around in the late 90's up to 2001? I used to ride all the time out at Hangtown, Marysville Riverfront & E Street, Mammoth Bar, Argyl Park, Club Moto in Livermore, and Sac Raceway for the Friday night SX. I had the Splitfire KX 80/85 and we drove in a big white box van.

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MCM2 name - RXR_ProKawi24
PS4 Gamertag "Rocko24" - Add me for MES2 (soon to be MES3)

1/28/2020 6:02 PM
Edited Date/Time: 1/28/2020 7:04 PM

ProKawi24 wrote:

I don't mean to come across as a dick but not being able to move 1 leg below the knee is in no way at all comparable to being paralyzed waist-down or neck-down. Mav, Scottie, and myself are all paralyzed and in wheelchairs from racing MX and I can safely say for those guys we'd give anything to only have a problem with half of a leg. Hell I would still be riding my bike if that were the only problem.

When most people think of paralysis, they just think you can't walk. They don't realize the biggest issue we face is actually things like bowel & bladder control, urinary tract infections that routinely put us in the hospital, pressure sores, leg and stomach spasms that make you feel like you're being punched in the gut. I work a 9-5 job as a real estate underwriter so each day getting dressed is a struggle, lifting myself in and out of my truck and breaking down my chair is a struggle, my left shoulder has a major rotator cuff tear and bicep tendon tear that hurts like hell at the end of each day but I can't get the surgery to fix it because I can't afford to be off work for the 6 months it will take for full recovery. I don't get disability because I make more than the limit is allowed at my day job. The problems run much, much deeper than people realize.

My best advice? Have that person read my post so they understand how lucky they are to only have an issue with their lower leg and can still do so many things people stuck in chairs can't. Sounds crude but personally when I'm feeling down I just remember all the guys I know who are paralyzed from the neck down and can't do half the things I still can and it makes me feel very grateful. I still love life and make the best of things. And I'll tell you right now, if I walked again tomorrow the first thing I'd do is buy a new bike and go straight back to riding.

Very well said with clear insight into the challenges faced from actual paralysis.

However I must respectfully disagree on you final statement. Although I do respect whatever people need to use to lift them selves up but I’m not an advocate for looking at people worse than you and then deciding how lucky you are. The Level Envy is real in the dissabled community, this is when people with higher level injuries are demoralised by seeing people with lower level injuries do more. I’m a T10 paraplegic but I’m really conscious and aware when I’m around others who may hav higher injuries than me, they can issues with their hands and strength and I’m aware how bad level envy can be. But at no point do I ever in my mind go ‘well you have it worse than me so I’m gonna use your worse injury as my source of happiness and hope’

I have also done all the action sports I can, I still ride a bike and am looking at getting a mtb and have recently got into prone surfing. And I am definitely becoming aware that it’s somehow both a search for adrenaline, and some way of ‘proving’ my ability regardless of the disability. This has led me to think through what and why I do things.

I work as a uni lecturer and in the film industry so I think luckily it’s not a pure 9-5 job because I’m not sure if I could manage - I could easily work 3x12hr days in a row and then need a break for a few days, but 9-5 every week I would probably collapse.

To be honest I’m not sure what the answer is but for me rather than reveling in what you can do more than people worse off, revel in what you can do full stop. And the biggest thing I’ve learnt is the importance of a team, not so much for day to day things but for larger projects or activities or whatever. Find your tribe and you will be able to do more as a team than you ever could by yourself before your accident. But you also have to realise that like in all teams you need to bring something to the table, find your skills, it could be mechanical, creative, bein a funny mother fucker. I have a big car so I’m almost always the one driving anywhere when we go as a group. Find what you can offer and I garauntee you can offer so much. It’s really about what you can give, and if you see someone worse off don’t think ‘lucky me’ think, can I do anything for them - they probably have it under control and it’s all good but just the the mindset difference is important. I know in sound very much like RyanHughes and he’s a fucking lunatic.

And if anyone comes up to pray for you punch them in the throat. It is honestly the most offensive thing anyone can do.

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1/28/2020 6:52 PM
Edited Date/Time: 1/28/2020 6:57 PM

ProKawi24 wrote:

Lots of respect to you dude. Sometimes we (as in the person in the wheelchair) tend to forget the effort required by our loved ones to help care for us. Luckily I was only 12 years old when my accident happened so I had my parents and sister there to take care of me and my mom was just finishing up nursing school. You have no idea how much your help means to your wife. It can be hard for us to say it but just know you mean the world to her and you deserve tons of respect and praise for what you do.

Like you said it comes down to you either will or won't. You either give up or get going.

Thanks man, I'm 38 years old and we started dating when we were kids, 14 and 17 yrs old. She was diagnosed around 16 yrs old when she started showing signs of exhaustion and weakness. Now 21 years later, we are closer than ever. Through time it has gotten very challenging, but we definitely are optimist and live life to the capacity that we can. It is very humbling at times but i know her appreciation and we know our position. We're not sure what exactly the future will bring but we'll give it our best. Thanks again.---- I also ask her (and question myself) every so often if i should hang up the boots or if we should even have our son out there into moto. Her response every time is, if i could be out there with y'all i would be on a bike. She does come to the track every time with us. It is truly a family outing. I'm giving myself a couple more years then gonna hang um up.

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1/28/2020 7:47 PM

Zacka 161 wrote:

Very well said with clear insight into the challenges faced from actual paralysis.

However I must respectfully disagree on you final statement. Although I do respect whatever people need to use to lift them selves up but I’m not an advocate for looking at people worse than you and then deciding how lucky you are. The Level Envy is real in the dissabled community, this is when people with higher level injuries are demoralised by seeing people with lower level injuries do more. I’m a T10 paraplegic but I’m really conscious and aware when I’m around others who may hav higher injuries than me, they can issues with their hands and strength and I’m aware how bad level envy can be. But at no point do I ever in my mind go ‘well you have it worse than me so I’m gonna use your worse injury as my source of happiness and hope’

I have also done all the action sports I can, I still ride a bike and am looking at getting a mtb and have recently got into prone surfing. And I am definitely becoming aware that it’s somehow both a search for adrenaline, and some way of ‘proving’ my ability regardless of the disability. This has led me to think through what and why I do things.

I work as a uni lecturer and in the film industry so I think luckily it’s not a pure 9-5 job because I’m not sure if I could manage - I could easily work 3x12hr days in a row and then need a break for a few days, but 9-5 every week I would probably collapse.

To be honest I’m not sure what the answer is but for me rather than reveling in what you can do more than people worse off, revel in what you can do full stop. And the biggest thing I’ve learnt is the importance of a team, not so much for day to day things but for larger projects or activities or whatever. Find your tribe and you will be able to do more as a team than you ever could by yourself before your accident. But you also have to realise that like in all teams you need to bring something to the table, find your skills, it could be mechanical, creative, bein a funny mother fucker. I have a big car so I’m almost always the one driving anywhere when we go as a group. Find what you can offer and I garauntee you can offer so much. It’s really about what you can give, and if you see someone worse off don’t think ‘lucky me’ think, can I do anything for them - they probably have it under control and it’s all good but just the the mindset difference is important. I know in sound very much like RyanHughes and he’s a fucking lunatic.

And if anyone comes up to pray for you punch them in the throat. It is honestly the most offensive thing anyone can do.

Hyperbole much? There are plenty of worse things that someone could do than pray for you. Regardless of religious beliefs, being offended at someone’s positive gesture is laughable. Someone stopping you in the street may be rude, but behind a dick about it is simply being a dick. I’ll pray for you, bro.

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1/28/2020 8:32 PM

ProKawi24 wrote:

I don't mean to come across as a dick but not being able to move 1 leg below the knee is in no way at all comparable to being paralyzed waist-down or neck-down. Mav, Scottie, and myself are all paralyzed and in wheelchairs from racing MX and I can safely say for those guys we'd give anything to only have a problem with half of a leg. Hell I would still be riding my bike if that were the only problem.

When most people think of paralysis, they just think you can't walk. They don't realize the biggest issue we face is actually things like bowel & bladder control, urinary tract infections that routinely put us in the hospital, pressure sores, leg and stomach spasms that make you feel like you're being punched in the gut. I work a 9-5 job as a real estate underwriter so each day getting dressed is a struggle, lifting myself in and out of my truck and breaking down my chair is a struggle, my left shoulder has a major rotator cuff tear and bicep tendon tear that hurts like hell at the end of each day but I can't get the surgery to fix it because I can't afford to be off work for the 6 months it will take for full recovery. I don't get disability because I make more than the limit is allowed at my day job. The problems run much, much deeper than people realize.

My best advice? Have that person read my post so they understand how lucky they are to only have an issue with their lower leg and can still do so many things people stuck in chairs can't. Sounds crude but personally when I'm feeling down I just remember all the guys I know who are paralyzed from the neck down and can't do half the things I still can and it makes me feel very grateful. I still love life and make the best of things. And I'll tell you right now, if I walked again tomorrow the first thing I'd do is buy a new bike and go straight back to riding.

Zacka 161 wrote:

Very well said with clear insight into the challenges faced from actual paralysis.

However I must respectfully disagree on you final statement. Although I do respect whatever people need to use to lift them selves up but I’m not an advocate for looking at people worse than you and then deciding how lucky you are. The Level Envy is real in the dissabled community, this is when people with higher level injuries are demoralised by seeing people with lower level injuries do more. I’m a T10 paraplegic but I’m really conscious and aware when I’m around others who may hav higher injuries than me, they can issues with their hands and strength and I’m aware how bad level envy can be. But at no point do I ever in my mind go ‘well you have it worse than me so I’m gonna use your worse injury as my source of happiness and hope’

I have also done all the action sports I can, I still ride a bike and am looking at getting a mtb and have recently got into prone surfing. And I am definitely becoming aware that it’s somehow both a search for adrenaline, and some way of ‘proving’ my ability regardless of the disability. This has led me to think through what and why I do things.

I work as a uni lecturer and in the film industry so I think luckily it’s not a pure 9-5 job because I’m not sure if I could manage - I could easily work 3x12hr days in a row and then need a break for a few days, but 9-5 every week I would probably collapse.

To be honest I’m not sure what the answer is but for me rather than reveling in what you can do more than people worse off, revel in what you can do full stop. And the biggest thing I’ve learnt is the importance of a team, not so much for day to day things but for larger projects or activities or whatever. Find your tribe and you will be able to do more as a team than you ever could by yourself before your accident. But you also have to realise that like in all teams you need to bring something to the table, find your skills, it could be mechanical, creative, bein a funny mother fucker. I have a big car so I’m almost always the one driving anywhere when we go as a group. Find what you can offer and I garauntee you can offer so much. It’s really about what you can give, and if you see someone worse off don’t think ‘lucky me’ think, can I do anything for them - they probably have it under control and it’s all good but just the the mindset difference is important. I know in sound very much like RyanHughes and he’s a fucking lunatic.

And if anyone comes up to pray for you punch them in the throat. It is honestly the most offensive thing anyone can do.

tingo wrote:

Hyperbole much? There are plenty of worse things that someone could do than pray for you. Regardless of religious beliefs, being offended at someone’s positive gesture is laughable. Someone stopping you in the street may be rude, but behind a dick about it is simply being a dick. I’ll pray for you, bro.

It’s not a positive gesture. You think it’s a positive gesture but it has no positive value and disregards the fact that every person with a disability has searched long and hard for every medical possibility for a cure or improvement and for someone to come along with zero medical knowledge and basically say - ‘ you know what will fix you, me talking to the sky on your behalf’ - it truly disregards a dissabled person autonomy.

Not only that but it re iterates a stereotype that dissabled people neeeed to be prayed for. I can be going about my day havin a good old day and a member of the Christian cult will just remind me that I am not normal I am broke and I need their prayers...

And as you just did then, completely disregard my and other dissabled peoples feelings on the matter. You assume it’s possitive and disregard reasoning why it isn’t.

I’ve been stopped by I’ll advised people just impressed by what I’m doing, going shopping, eating a kebab, whatever - and at least they are impressed by what I can do. The Christians that pray are only doing it to re iterate what I can’t do... ‘hey look this person can’t do as much as me let’s point that out and fix it with our prayers that will make them feel better’

It’s objectively offensive on so many levels man so many levels

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1/28/2020 9:12 PM

I think we've exhausted all the constructive conversation for this topic- I'll lock the topic now. Thank you and hope everyone has a good day. -Kyle

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'16 FC350