December 2, 2023
Topher Downham

Once I was a newly minted T10 para, I recall a dialog with a buddy who was three years post-injury, a T6 para, who had additionally develop into a mentor. He flew hold gliders, sailed, water skied, had a girlfriend and was getting A’s in faculty. Though I had accepted my harm and I used to be getting again into life full tilt, I admitted that I secretly hoped for a SCI treatment within the close to future. He stated, “Take a look at it this fashion. Let’s say a treatment by no means comes, or it does, however not for 30 years. Consider your self 30 years from now and ask, ‘What did I do? Did I push the pedal to the steel and have a lifetime of journey that I can fondly look again on? Or did I sit on the sofa ready for a treatment?’”

I took that recommendation to coronary heart. Thirty-seven years later, I’m grateful I selected a lifetime of journey and journey, starting from hold gliding at 20,000 ft to scuba diving pristine reefs, to not point out friendships, love and being a dad to an incredible daughter.

Listed here are some nuggets of knowledge from veteran wheelers on methods to survive and thrive with SCI.

Steve Ackerman, 69, T9, 36 years post-injury
Theo Braddy, 63, C4-5, 48 years post-injury
Connie Brittain, 66, C7, 42 years post-injury
Topher Downham, 54, C6-7, 27 years post-injury
Craig Grey, 67, T11, 44 years post-injury
Nancy Becker Kennedy, 71, C5-6, 50 years post-injury
Bob Vogel, 62, T10, 37 years post-injury

Greatest Recommendation Acquired

TOPHER DOWNHAM: “Hang around with individuals who push you previous your limits. A neighbor of mine was a seasoned para and wouldn’t let me simply sit on my laurels, like how I couldn’t get into his truck. He would gently taunt me: ‘Oh the poor little quad,’ ‘I can’t do that.’ We figured it out collectively, ultimately utilizing a pillow on the ledge of his truck so I might switch from my chair to the ledge, then as much as the seat. He and I took lengthy street journeys collectively, and it was a blast.”

BOB VOGEL: “Somebody in rehab informed me to take a look at vocational rehabilitation. Although terrified, I did, and so they ended up paying for me — a highschool dropout — to earn a B.A., which led to journey, friendships and adventures, together with successful an Emmy award.”

CONNIE BRITTAIN: “’Verify your pores and skin with a mirror earlier than going to mattress and anytime you get a brand new cushion’ is what I discovered in rehab. And watch out the place you sit. Verify first together with your fingers that it isn’t too scorching, or there isn’t one thing too arduous earlier than sitting.”

THEO BRADDY: “If one thing is going on to you as a disabled particular person, it’s undoubtedly occurring to different disabled folks, and it’s a superb indication there’s a system advocacy subject.”

CRAIG GRAY: “In my early post-injury days, my rehab doc suggested that I needed to develop the medical information of my very own situation in order that I could be my very own advocate. I work with medical doctors, however I’m all the time going to be verifying info.” [This advice likely saved his life when he developed a deep-tissue pressure sore, spiked a fever of 106 and suspected he had osteomyelitis]. “The doc didn’t consider paras might get osteomyelitis, and since she was the first physician treating me, she intervened after I tried to talk with different medical doctors within the system. I lastly obtained to see one other physician who excised the wound, discovered the osteomyelitis and obtained me heading in the right direction.”

STEVE ACKERMAN: “Hope for one of the best, plan for the worst. … You don’t essentially ever get used to being paralyzed, however you DO get higher at it.”

Greatest Recommendation Given

GRAY: “Ensure you retain your backbone and shoulders versatile and maintain stretching, as a result of as we age, issues stiffen up, and it turns into subsequent to unimaginable to regain flexibility. I took flexibility with no consideration in my 30s and 40s. Now, in my 60s, I do stretching, however at my age it’s too little too late.”

DOWNHAM: “Journey as a lot as potential. Don’t be afraid to do issues due to what ‘would possibly’ occur. Such as you ‘would possibly’ crap in your pants, and you may keep residence on a regular basis if you’re afraid, however you’ll miss out on life. And in case you do crap your pants, it received’t kill you, you will get cleaned up and ultimately it will probably develop into comedy. I used to be invited to Japan to race downhill off-road wheelchairs, and I crapped my pants in the course of the race! On the backside, someone helped me to the lodge, I obtained cleaned up and put it in my rearview mirror. It could have been horrible to overlook the journey and journey for concern of a bowel accident.”

VOGEL: “I encourage folks to attempt cognitive restructuring — turning unfavourable ideas into constructive ones by considering of inauspicious issues about SCI as stuff you love. As somebody who loves scuba diving, I restructure the customarily irritating and overwhelming process of monitoring my physique post-SCI by evaluating it to scuba diving, the place it’s important to always scan gauges to test depth, time, remaining air, and so on. Once you’re diving it’s cool and very important to security, and I’ve chosen to really feel it’s simply as cool to do that with SCI.”

man in manual chair on a wooden dock with large body of water in the background
Craig Grey

Greatest Recommendation for Coping with Docs

NANCY BECKER KENNEDY: “Search for a health care provider that works collaboratively with you as a group and once you discover one, hold on to them. If potential, discover a good SCI rehab [physical medicine and rehabilitation] physician to be your major care doc as a result of they’ve a greater understanding of your SCI. I had an ideal PM&R doc for 35 years, and I informed him, ‘You higher not die.’”

DOWNHAM: “You will need to rise up for your self. Attempt to discover a major care physician who’s open to your opinion. Over time I’ve discovered how my SCI physique works higher than most medical doctors, so if I get recommendation that doesn’t appear right, I query it. If potential, attempt to discover a health care provider or a middle like Craig Hospital that has a number of expertise with SCI. An skilled PM&R doc is in a position to determine issues lots faster as a result of they’ve possible skilled it in a affected person already.”

Be sure to develop and leverage a big, sturdy group of wheelchair customers that can assist you perceive what medical and life choices could also be obtainable to you.

Craig Grey

BRADDY: “Be certain that your physician takes the time to totally perceive your incapacity. They need to take heed to you; in the event that they don’t, discover one other who will. Bear in mind, medical doctors are human too. They’ll get issues improper.”

GRAY: “Docs and nurses, regardless of their greatest intentions, aren’t all the time one of the best supply for info for residing with SCI. Be sure to develop and leverage a big, sturdy group of wheelchair customers that can assist you perceive what medical and life choices could also be obtainable to you.”

BRITTAIN: “We all know our our bodies higher than most medical doctors, so attempt to develop a group strategy to work together with your physician.”

ACKERMAN: “Don’t go to the physician except you actually should. A hospital isn’t anyplace you need to be if you’re sick or drained.”

Connie Brittain

Greatest Recommendation on Staying Wholesome

BRADDY: “Be taught to concentrate to what your physique is telling you. Whether or not it’s sweating abruptly, a headache, or a muscle spasm the place you not often have them, your physique will inform you when one thing is improper. Concentrate and you may keep away from a number of hassle.”

VOGEL: “Drink a number of water, maintain your weight all the way down to take stress off of your shoulders, and watch out about meals with sugar and carbs as a result of they trigger irritation.”

GRAY: “Water is your physique’s buddy; sugary drinks are your physique’s enemy.” [Gray adds that eating the correct amount of fiber is important, and so is the type of fiber you eat. Seek a balance of soluble fiber (fruits, vegetables and psyllium — fiber that dissolves into a gellike material in water) and nonsoluble fiber (wheat bran, vegetables and whole grains). This is vital in maintaining a healthy bowel program]. “I discover after I keep a wholesome bowel program, it helps scale back UTIs.”

Attempt for stability … but it surely’s OK to have a little bit of cake every now and then.

Connie Brittain

BECKER KENNEDY: “I attempt to eat a number of natural vegatables and fruits, however I additionally search for stability, which suggests each as soon as in an ideal whereas, having a extremely good steak. And, after all, slightly wine on occasion. One factor about consuming actually wholesome is that after some time, meals that isn’t wholesome doesn’t style good anymore.”

BRITTAIN: “It’s necessary to try for a stability of religious well being, bodily well being and emotional well being. In case you are consuming nicely however not coping with an emotional drawback, you should have problem. And it’s OK to have a little bit of cake every now and then.”

ACKERMAN: “Make your exercise your first appointment. No matter it’s that you just do for train, make it your first precedence.”

Greatest Recommendation for Onerous Occasions

VOGEL: “Good associates and good cardio are nice methods to get your endorphins up and make your self really feel higher.”

GRAY: “Develop and keep a big group of friendships with different wheelchair customers with SCI that can assist you perceive and navigate the SCI world and who you may discuss with about SCI points. They are going to get you straight away. Likelihood is they’ve been there and sure have some good perception, can put issues in perspective and maybe add some humor.”

BECKER KENNEDY: “Consider being constructive.”

BRADDY: “Determine who is really a buddy. This isn’t a social media buddy. It’s somebody who will drop what they’re doing and are available to help you. Anybody can help you when it’s handy. True associates will help when it’s not handy.”

BRITTAIN: [Sometimes you just have to smash things.] “I used to be going by way of a extremely tough time as a result of someone pricey to me had handed. I informed my boys to carry a watermelon from the kitchen into the yard and produce a sledgehammer. I began crushing it with the sledgehammer, taking out my anger and damage. A neighbor requested, ‘What are you doing over there?’ And I stated, ‘It’s OK, my sister died.’”

DOWNHAM: “When occasions are arduous, get out of the home and go into movement, like handcycling on a path by way of the woods. Pushing my chair in nature is how I take care of tough occasions. Like throughout Covid, you weren’t speculated to go outdoors. Hell yeah, I went outdoors! Get off the pc and get outdoors and have some movement every single day.”

Greatest SCI-Associated Monetary Recommendation

VOGEL: “Learn Social Safety’s The Purple Ebook cowl to cowl, as there are many alternatives to attempt work and maintain your advantages. Additionally try their Ticket to Work program, which presents help moving into the work drive.”

GRAY: “In case you are lucky sufficient to work at an organization that has a 401(okay), maximize your donations to it, and in case you can in any respect, tuck away some cash, even when it’s simply 5 bucks every week, in a separate account as a result of even one of the best insurance coverage just isn’t going to cowl your wants.” [Gray says the extra savings came in handy covering $10,000 of treatments that helped him avoid shoulder surgery but were not covered by insurance.]

BECKER KENNEDY: “Studying about varied SSDI applications like PASS (Plan to Obtain Self Help) enabled me to maintain working and maintain my advantages.” [To cope with a lengthy hospitalization, Kennedy got a Waiver Personal Care Services waiver for people that have been in the hospital for more than two months and need 24-hour care.] “With out the WPCS waiver, I’d have misplaced my residence and ended up in a nursing residence. It enabled me to have full-time care at residence.”

BRADDY: “Begin an ABLE [Achieving a Better Life Experience] account as a tax-free technique to save for disability-related bills, whereas sustaining authorities advantages. If an ABLE account just isn’t obtainable, look for the same program or put away a saving account for emergency assistive know-how restore or buy.”

BRITTAIN: “Make sure you save all SSDI receipts, letters, in addition to work receipts, bills, and so on. If you will return to work, know the foundations.”

DOWNHAM: “I’m a giant fan of getting off the federal government tit as quickly as potential as a result of it’s a lure that may be arduous to get out of. In 2005 I had a chance to take a full-time job at $35,000 a 12 months and it was scary, but it surely was price it, and I haven’t seemed again.”